`

Larry's Status Updates
Click here for a summary my unexpected initial diagnosis of Mantle Cell Lymphoma in May 2009

Larry & Susan Summer 2005 Larry & Susan and family,  May 2014
 

www.BHSBees.com was started in September 1996 and is owned and maintained by Larry Lewis - BHS Class of '68
Larry Lewis Night - 9-25-09    -  Thanks to Everyone, from Larry  -  Co-Worker Runs Marathon - 3-21-10


(Newest Update at the top)

5/1/17
  
May 1st, 2017 marked 8 years since my initial diagnosis with Mantle Cell Lymphoma. At the time, in 2009, survival rates were 1 to 3 years. In December 2009, after 4 months of chemo, I was not anywhere near remission. A 2nd opinion with an MCL specialist at UVA offered a much tougher 24/7 chemo regimen over a 3 month period. After going through that, I was pretty weak, but much closer to remission, but not quite there. A 3rd opinion at VCU on December 23rd, 2009 told me that I could have less than a year left. It was a very sad day that day. I never went back to that doctor! It was not a good way to lead into Christmas in 2009.
   My UVA specialist suggested a 3rd chemo type that worked in a different way, to try and get the remaining cancer. I proceeded with that, and received it 16 times over a period of a few months - twice a week for the first half and once a week for the 2nd half. I was declared to be in remission on August 4th, 2010. That was 6-3/4 years ago. After that, in late 2010 through August 2012, I received 12 infusions Rituxan, a synthetic antibody, once every other month over a 2 year period. It was intended to make my remission last longer and to try and get rid of as much MCL as possible. It is a targeted drug.
So far I’ve stayed in remission since 2010. The doctors are not able to say why I have not yet relapsed. Even with today’s newer chemo drugs, relapse is expected in 3 to 5 years. In April 2017, I asked the oncologist if they think I will relapse, since almost everyone with MCL does relapse eventually. He said he couldn’t say for sure. But that he does have quite a few people he has treated, with long remissions. No oncologist ever wants to say the word “cured” when it comes to MCL. It is rare. I have never known of a patient that didn’t eventually relapse (and there are nearly 500 on an MCL message board that are followed closely, using a spreadsheet they update and edit and issue every 2 months). So I live expecting a relapse eventually.
But meanwhile, I am enjoying being healthy for the most part. Although I have very low platelets (35), and it could eventually lead to some problems. Possibly a spleen removal. Or more chemo. Hopefully not internal bleeding. That could easily be fatal. I’m on the borderline of needing platelet transfusions as it is. And a platelet transfusion does not last very long.
I know I have been very fortunate to have survived this long. And I hope and pray for more years. I never dreamed in 2009 that I might survive this long. I am thankful for my doctors, for Susan as a devoted wife and caregiver, for my family and friends, and all the prayers said for Susan and I. I’m enjoying watching our grandsons grow up, and our daughter, and our son-in-law. So thankful to still be here and not miss these experiences.
   May 1st, and August 4th will always be special dates for me. I celebrate the miracle of life every day, but especially on those days.


3/28/17
  
Today’s visit to UVA with Dr. Michael Williams and NP Kim Leake was good. Everything is still stable. My platelets are still low, around 35. Liver enzymes were normal, so that indicates the Hepatitis E has not come back. It is hard to believe that May 1, 2017, it will be 8 years since my initial diagnosis. I have been feeling pretty well overall, and the past two winters, I have avoided catching any bugs. I’ve been getting my flu shot every year, and my other immunizations are up to date (pneumonia, etc).
   I am very thankful for the thoughts and prayers from everyone. I know I’ve been blessed to have survive much longer than expected, well beyond the average survival rates. I asked the doctor today if I might still relapse one day, and he said yes, it can still happen. But he also said that I was like quite a few others treated under his care at UVA, with a long remission. That was encouraging. We discussed his ongoing involvement with new targeted drugs for MCL (Mantle Cell Lymphoma). New variations of the targeted pill Ibrutinib, that do not cause as many side effects, especially less internal bleeding than the original version. With my low platelets, I would not be eligible for the original version, but possibly the newer versions. He also said that a fairly new drug approved for CLL (Chronic Lymphocytic Leukemia), is being used in trials at UVA for MCL patients. It is an BCL2 inhibitor called Venetoclax.
   No one is said to ever be cured of MCL. Treatments the past few years have leaned toward managing it, like a chronic disease, rather than to try and completely destroy it. The R-hyperCVAD that I got at UVA in fall 2009 was meant to destroy it. That was followed by 16 infusions of Velcade and then 2 years of Rituxan maintenance, to try and really get a deep remission. I’d say so far, that plan was a good plan. It wasn’t easy, but it has been worth it. However, “cured” is still not something that is mentioned. But the possibility of never relapsing would be statistically very unlikely. For now, I am enjoying feeling as if I was cured these past few years, yet still knowing in the back of my mind, I’m probably not.
   God bless you all, and thank you for your continued thoughts and prayers.
   (I've updated my Excel spreadsheet)

9/30/16
  
This week, I had my 6 month follow-up office visit and blood tests with Dr. Michael Williams at UVA. There were no signs of relapse in my blood work or physical exam!  My spleen is still enlarged, around 18 cm. And my platelet count has been between 30 and 40 for the last couple of years. It was never above 100 since my initial diagnosis. This visit, it was 38 (normal is 140-440).
   I still have to have an endoscopy at least once a year to check varices in my esophagus, from portal hypertension. This is caused by damage to my spleen and liver from Hepatitis E. And also an ultrasound of my liver to look for progression of the cirrhosis, or to look for tumors. In 2015, the ultrasound discovered a blood clot where the spleen and liver dump blood into the splenic artery. It was not blocked. This was confirmed with a CT scan. So January, February and March of 2016 I was on Eliquis to try and dissolve the clot. It did shrink the clot, but not completely. I will have another ultrasound on October 6th, and depending on how the clot looks, I may have to take some more Eliquis. I had no problem with the Eliquis, it was very easy to take, no restrictions on eating, no blood tests. However, I did lose a couple of small spots of hair on the back of my head, about 1/2" diameter. Six months after the last dose, one spot has filled back in, and the other one is trying.
   I am very active, plenty busy, retired but working some part time (programmer), and this year we did some traveling for 3 weeks. One week with our daughter, son-in-law, and two grandsons at Disneyworld, and two weeks at Myrtle Beach.
   I do have to keep an eye on fluid buildup due to the liver damage, and take Lasix about twice a week to keep the fluid down. I hope I never have to get fluid drained off again in my life, the way they had to do it in July 2013. That was the first time, and hopefully the last time.
   I've long since passed the doctors' initial expected survival of 1 to 3 years from diagnosis. And I am so very thankful for that, and for all the prayers and support from everyone. There's no doubt that I have been blessed with extra time here. This August was 6 years of being in remission since August 2010, and almost 7-1/2 years since diagnosis in May 2009.
   My UVA oncologist, Dr. Williams, is speaking on Mantle Cell Lymphoma in Chicago in a break-out group at the North American Educational Forum on Lymphoma in Chicago on October 28-October 30. He speaks on Sunday October 29 at 11:15 AM on Novel Therapies and Clinical Trials for Mantle Cell Lymphoma. He also is part of a panel that discusses the future of lymphoma research and treatment at 9:30 AM on Sunday, October 29.

5/27/16
  
It has been a while since I posted any updates on my remission and health situation. UVA started me on 3 months of Eliquis, one of the 3 newer drugs to treat blood clots, back in mid-March. The purpose was to try and shrink a non-occlusive blood clot they found in my splenic vein, where blood leaving my liver and spleen exit and merge together. It was initially found with a liver ultrasound, which was being done every 6 months due to the cirrhosis I have from Hepatitis E. The HEV has stayed away since it was treated in early 2014. UVA told me that patients with liver damage commonly develop blood clots in this area. Since my platelets are so very low (around 35 for the past year, and 50 or less for the past few years, with a normal range being 140-440), being also on a blood thinner makes internal bleeding more of a risk. Platelet transfusions are given when the level falls below 20 (I have not had one since 2010). Rather than Coumadin, which requires frequent blood testing to monitor and make adjustments, or an injection, UVA decided on a low dose of Eliquis, twice a day. There are lots of good things about Eliquis. You don’t have to get your blood monitored at all, and can continue to eat whatever you want. It also has a quick half-life, unlike Coumadin. That’s the reason for the twice a day dosage. The level in your system drops off in a matter of a few hours after the last dose of Eliquis. Still, internal bleeding was a concern, with my low platelets. The negative side of Eliquis is, being a new drug, it was Tier 4 on my insurance, and after insurance, cost me $315 per month! That’s about $5.25 per pill. But I can’t complain because I did not have any problems while I was on it, just some dull headaches. It also probably caused a couple of small patches of hair to fall out on the back of my head. (If it was not from Eliquis, I don’t know what caused that, hopefully it will fill back in soon).
   So last week, about the time I was finishing up the last week of Eliquis, I went back to UVA for a follow-up ultrasound to see if the clot had shrunk any. All along, before UVA found it, I had no idea that I had a clot, and didn’t feel any different before or after taking the 3 months of Eliquis. The ultrasound showed that the clot had shrunk, but they did not tell me how much it was shrunk. But they were satisfied enough to tell me that for now, I can stop taking the Eliquis, which is fine with me. I do wonder if clots are likely to be formed in any other places, because of the cirrhosis. That was not mentioned. I expect to have to resume Eliquis sometime in the future, maybe late this year.
   In 2013, I was scheduled to see someone at UVA about scheduling removal of my spleen. This would bring my platelet count up to normal. Damage to my spleen from Lymphoma is the cause of my low platelets. My bone marrow makes the proper amount of platelets, but being they are fairly large, they get trapped in my damaged spleen and die, most of them don’t make it into circulation. Kind of like an oil filter traps oil impurities. A friend with lymphoma recently had his spleen removed, and within an hour his platelet count was in the normal range. Amazing. But in 2013, I ran into a road block, when the infected fluid in my abdomen caused a big problem and I had to be admitted to UVA. So the spleen removal was put on hold. Since fall 2013, I have not had a repeat of the fluid buildup problem, and have been able to keep that under control. In fact, winter 2015-2016 was the first winter in several years that I did not get sick with a bronchial infection and fever. That sure was nice.
But I did have bronchial problems, worse since in fall 2013, when I was put on a beta blocker. This was not because of high blood pressure. That normally runs about 125/65 or 125/70, with a pulse of around 65 or 70. The beta blocker (Nadolol) was prescribed because of portal hypertension, which causes swelling of the veins in my esophagus. And that is a risk of bleeding. The veins are not real enlarged, and they have checked several times with endoscopy. But I developed coughing while on Nadolol. And even some small amounts of fluid in my lungs. To the point that a Lynchburg doctor looked at an x-ray last year, and called it the start of COPD! I did not believe him. The coughing and fluid was worst at night. I convinced the my liver doctor to try a different beta blocker a few months ago and switched to Inderal. For a couple of weeks, things got better with the coughing. But after a few more weeks, it all came back, almost as bad as when I was on Nadolol. And both drugs were in low doses, compared to how much some people take to manage high blood pressure. So 3 weeks ago, I convinced the doctor to let me stop the beta blocker, and see what happens. He said that I’d have to have an endoscopy every 6 months if I stop it. So I agreed (hopefully insurance will cover it!). I also have to monitor my blood pressure and pulse on a regular basis. And sure enough, after the first week the coughing was better. Now, after 3 weeks, it is almost completely gone. And it is big relief. It would keep me from getting to sleep most of the time, among other things. There is still an occasional cough, but my voice, which had been hoarse and weak, has also gotten almost back to normal.
   So now, I have no appointments or blood tests or anything scheduled until September 27th. That is the longest stretch without an appointment that I think I’ve had since I was first diagnosed with MCL on May 1, 2009. It feels very strange.
I feel once again, very blessed to be in this situation, and I have many friends and family who need prayers right now much more than me. I’ve been encouraged and supported by your prayers for many years, and I feel it is inadequate to only say Thank You. God no doubt wanted me to be here longer than the doctors originally expected. Last weekend, I participated in my 7th Relay For Life in the Survivor Lap. It is and always has been emotional for me to participate in the Survivor Lap. Thinking of those who walked in that lap in previous years, who are no longer here with us now. Some that I knew personally. And thinking of others I know who were diagnosed and lost the battle with cancer after I was diagnosed. And thinking how next year, I may or may not be here for it. A wide range of emotions cross my mind.
   I have not been doing much work for AREVA the past few weeks, and that’s fine. There was quite a bit the end of last year, and first of this year. I am in my 4th year of being sub-contracted to AREVA, and it has been nice to keep in touch and stay active mentally and physically, doing some programming and sometimes going in to work on some mass spectrometer leak testing. Right now, it is unknown how much work I will get with them the rest of this year, or whether they will need me next year. If they want me, and I am still in decent health like I am now, I will continue. I’d be happy with 15 or 20 hours a month average. Right now, it looks like I may get most of this summer off.
   Meanwhile, I am enjoying being retired and thankful for continued remission, and for my family and friends.
   (I've updated my Excel spreadsheet)
Larry

2/18/16
I’ll be starting the blood thinner Eliquis Friday morning 2/18 to try and dissolve a blood clot where my spleen and liver empty into a major vein. It is not blocked yet, so it was caught early. My main concern is because my blood is already very thin and clotting times are slow from the lymphoma and chemo in 2009-2010. Normal platelet count is 140-440 and I have not been above 80 in several years, and I have been between 30 and 40 for about 2 years now. Platelet transfusions are given below 20.
Hopefully I will be on Eliquis only 3 months. And hopefully I will not have any internal bleeding. No aneurysm, no stroke, no nosebleeds, no internal bleeding. Especially while I am asleep. I am anxious about it more so than I was with chemo because there’s no antidote to give me to stop the bleeding with Eliquis, unlike Coumadin. But supposedly Eliquis is much easier to take, and requires a lot less monitoring and no special diet requirements.
 
I’ve felt pretty well lately, and hope this is all behind me in 3 months. Looking forward to spring and summer!
Thanks to all for your prayers and your thoughts and support.

Larry

2/9/16:
I've been doing fairly well since my last update back in August 2015. I worked quite a bit during October, November and December 2015. I am still retired, and working part time as a sub-contractor to AREVA, and work about 25% of the year, about half of that I am able to do from home (programming).

There is currently no sign of my Mantle Cell Lymphoma, and also no signs of the Hepatitis E I was treated for in late 2014.

But now I have a new problem.

The medicine I am about to start taking one scares me more than the lymphoma or the chemo I was on. You may remember that I had high liver enzymes after lymphoma and chemo, and that got worse gradually over time, from 2010 until in 2013. Then in 2013, suddenly the liver enzymes jumped to 10x the normal maximum values. I accumulated a lot of abdominal fluid and it became infected. I was hospitalized in summer 2013 for a week to remove 8 liters of infected fluid and get rid of the infection. Since then I have not had any more problems with fluid buildup.

In fall of 2014, UVA, Mayo Clinic and the CDC in Atlanta finally determined that I had a rare form of Hepatitis, it was Hepatitis E. It was determined by the CDC, because UVA had never seen a case of Hepatitis E. I was their first case. It is mostly found in Asian countries. I was treated for that in October-November-December 2014 and it went away during the first month of treatment. However cirrhosis remains. No one can say whether it was from lymphoma, chemo, a transfusion during chemo, or the Hepatitis E. The enzymes went up in spring 2010, while I was still getting chemo. It went up about the same time I started the 3rd different kind of chemo, Velcade. But I also had transfusions in November 2009. In any case, I have some cirrhosis in my liver.

With the restricted blood flow in my liver, and also some restricted flow through my spleen, damaged by lymphoma, I have portal hypertension, which is increased pressure in the main arteries that go from my spleen to my liver and back out. The back-pressure also causes varicies, which are enlarged veins in my esophagus, due to the increased back-pressure. About a year ago, they put me on a beta blocker (Nadolol a.k.a. Corgard), to help lower the pressure in those veins and arteries, to reduce the chance of bleeding. Normally that is prescribed for high blood pressure.

Since I don't have high blood pressure, I can only take 1/2 of the normal dose. The smallest normal dose of Nadolol causes my blood pressure drops too much. I have not had any bleeding problems. But I think the beta blocker has caused other problems. Not long after I started taking that, I developed congestion in my lungs. I cough a lot in the afternoons and evenings. Some days are better than others as far as the coughing goes. It is annoying and could be dangerous.

Routine follow-up ultrasounds of my liver every six months have been good. Cirrhosis is still there, but not getting worse. But two weeks ago, in an ultrasound, UVA saw what they thought was the start of a blood clot where blood exits my liver, at the intersection of a main artery. So last week, they did a CT scan to confirm it, and the CT scan did confirm the ultrasound findings.
The clot is not blocking the blood flow, but they are concerned that it could get worse. Blocking the flow of blood leaving my liver would be bad news. The back-pressure would probably be very high and maybe cause upstream bleeding, internally and/or externally, even a stroke. But also, the liver would be deprived of fresh blood and oxygen, and it would die.
 
After a meeting between my liver doctor, my oncologist and a hematologist all at UVA, they are putting me on a new type of blood thinner (Eliquis) , which only was approved in 2012. It is not a lot better than Coumadin, which has been around for years, but supposedly it is easier to manage.

The half-life of Eliquis is much shorter, so you have to take a dose every 12 hours. I can see why it is given this way, after reading a key point about Eliquis. When it comes to a bleeding problem, with Warfarin, there are antidotes for emergencies. That’s not true for Eliquis. The medicine has to run it’s course. Meanwhile you could be bleeding to death! It could be a brain hemorrhage, or bleeding in my upper or lower digestive tract, a heart attack, a stroke. It is very scary to me. More scary than all the intense, 24/7 chemo I have had. I think it is more scary because if internal bleeding starts, I may not know it until it is too late, and it could all be over very quickly. I try to not think about it. I've heard that there have been a lot of law suits filed for people who died from heart attack, bleeding, stroke. Not very encouraging.

Tonight I thought of a question that I did not think to ask UVA today during a meeting. After I take this for 3 months, they will do another ultrasound. They told me it probably will not shrink the existing clot. That was not good news. But it should prevent any additional clots from forming while I am taking it. But I don’t think I can stay on it forever. It is too risky. So what is the plan after the 3 months? That’s my question. They said the clot COULD go away on its own, but probably would not. I am thinking if I stop the Eliquis, it could start to grow. Being at that intersection of to arteries, I doubt it is something they could fix with a stent. Maybe bypass surgery. But that is also risky, with my very low platelet count, around 40. A normal platelet count is 140-440 and they give you platelet transfusions if you drop below 20. A bag of platelets might raise your count by 10 or 15. I've had a few platelet transfusions back in 2009. They don't keep your numbers up for very long, maybe for a week.

Before they will start me on Eliquis, they are going to do an endoscopy Thursday 2/11/16. I just had one in December here in Lynchburg. But they want to look again, to see how much of a risk I am for internal bleeding, with the existing varices. I expect to start the Eliquis soon. CVS did not have it in stock, and it is very expensive, being fairly new.

If anyone reading this has taken Eliquis, please drop me a message about how it went.

As always thanks to everyone for their concerns, thoughts and prayers.

Larry

8/4/15:
It was 5 years ago today, on 8/4/10, that I was declared in remission from Mantle Cell Lymphoma. Eight months earlier, after 8 months of strong chemo, including 3 weeks of 24/7 chemo at UVA, a doctor at VCU said I would not last another year. I thank God for each day I am a survivor, and I am able to continue to be here with family and friends, and be active and healthy for the most part. The 50% survival rate in 2009 was 3 years. Now the 50% survival rate is 5 years. However, surviving up to 10 years without a relapse is rare. Thank you to all my family and friends for your prayers and support. Since I was diagnosed in 2009, 52 people who were my family, friend, or an acquaintance, have passed away. Several were family. Several were high school friends. Some were other MCL patients who lost their battle, some from cancer or heart attacks. Right now, today, 9 friends have life threatening cancer or other illnesses. Life is short. Enjoy each day. And remember those who are fighting still with all kinds of issues. I know God has blessed me with far more than I deserve. And each day, I remember the value of life and thank Him for those blessings, and pray for others that are not doing as well. I am hoping for at least 5 more years of remission, and even better health. Next month I will turn 65, an age I thought I would never reach, in 2009.

3/8/15:
 
My UVA liver doctor, Dr. Caldwell, called me this afternoon, Sunday March 8th. When he calls it is always Sunday afternoons. He is dedicated, and that's how he spends Sunday afternoons, calling his patients. We talked about 10 minutes. He said the results of last week's ultrasound were good, and my blood tests showed my liver enzymes were still good, showing that he thinks it is likely that the Ribavirin I took in Oct.-Nov-Dec. took care of the Hepatitis E. Hopefully for good. I have been off that medicine for about 8 weeks now, and livery enzymes are still pretty much normal, for the first time since spring 2010. Hope they stay that way! He said it may take several months for my blood counts to recover from the effects of Ribavirin, but I handled it pretty well. I still have not regained the energy I lost due to my hemoglobin being lowered while on the medicine, but I think it will gradually come back, especially with spring weather!
  Dr. Caldwell also said that the liver ultrasound report graded me one point above cirrhosis, in other words, not quite cirrhosis. That's an improvement over the last ultrasound. He said that was great, and that my liver could possibly recover over the next 3 years or so. That would be nice.
  My platelet count is the lowest it has been in 2 years (31) (not good, normal is 140-440). It might have been affected by the Ribavirin. I will be seeing my UVA Oncologist (Dr. Williams) the end of March. It is a regularly scheduled 6-month follow-up exam and blood test. Hopefully my platelets will come back up some before then. Now if I can just shake this cough and lung congestion. I think it is very slowly getting better, at least I hope so. I am so tired of winter weather, and seeing the sunshine today and warmer weather will definitely help get me motivated.

2/10/15:

On January 5th, 2015, I finished three months of Ribavirin prescribed by Dr. Stephen Caldwell at UVA. On January 9th, I went to UVA for blood tests and office visit. They were amazed at how well I looked, both on paper, and in person. One intern was excited, saying I was probably the ONLY confirmed Hepatitis-E patient he would see in his lifetime. HEV is considered rare in the USA. In Asian countries, HEV is common, mostly due to contaminated drinking water. As many as 56,000 people die each year with HEV, mostly in countries with unclean water systems. It can also come from infected blood transfusions and food from infected animals.

Dr. Caldwell at UVA called me this afternoon to give me the PCR test results. He had called the CDC yesterday, since it had been a month, and they had not heard anything from the CDC on my test results. He said the PCR test results by the CDC were 'negative', meaning no sign of Hepatitis E. Which is great!

The original PCR test results from the CDC showed only a very low level of HEV to begin with. In the 40s. Some patients are over 1,000. Hopefully it is completely gone and will not come back. Whether the damage to my liver will recover is unknown. One of Dr. Caldwell's nurses who worked with me closely during the treatment said it is possible for my liver to get better, but it may take years. It will take a full 3 months for all the Ribavirin to get out of my system. I still have to go back for liver ultrasounds every 6 months for the next year, at least. The next ultrasound , on 2/16/15, includes a new test, elastography. It is better able to distinguish between dense tissue and soft tissue. This helps detect tumors and probably also can better evaluate functionality. Then in 6 months, I will have just a normal ultrasound of my liver, probably here in Lynchburg (I've had two here already). Then a year from now, around January 2016, another ultrasound with elastography at UVA.

Every 3 months, at least for this year, I will have blood tests to keep an eye on liver enzymes (AST & ALT) and also to watch for any lymphoma relapse. When I started the Ribavirin the first part of October, the AST & ALT liver enzymes were 10X the normal maximum. After the first month of Ribavirin, the AST & ALT were in the normal range. After finishing all 3 months of Ribavirin, the AST & ALT were still in the normal range. And now the CDC says the Hepatitis E is also not detectable with PCR testing. I will still continue to be on 4 prescriptions, two are to prevent fluid buildup (because my liver is not functioning 100%), one is an antibiotic, once a week, to prevent infection, and one small dose of a Beta Blocker to minimize the possibility of bleeding in my esophagus (esophageal varices).

On 3/31/15 I will go see Dr. Michael Williams, my main oncologist at UVA, for another 6 month follow up exam. As far as I can tell, there is no symptoms of Mantle Cell Lymphoma returning. Since January 2013, over the past 2 years, I have lost 25 friends, and I am talking about mostly local people. Some were MCL patients, on private Facebook pages or message boards that are for MCL patients and caregivers. Quite a few that I grew up with around Lynchburg passed away in 2013-2014. It is not easy to think about, but I expect this trend to continue as I get older. I am always reminded of something my dad told me one day, in his late 80s. He told me that he was sad, because ALL of his friends had passed away. He was serious. I understand that feeling more each year that I am survivor.

I am going to be in my sixth Relay For Life since I was first diagnosed with MCL in 2009. I am on the team "Cherish The Memory Of Greg", for Greg Tibbs. I worked with both of his parents. Greg passed away at a young age (32 I believe) from brain cancer. This year, the Lynchburg Relay For Life is at City Stadium on June 12th, 2015, from 7:00 PM - 3:00 AM.You can donate to my team, under my name, by going here: http://main.acsevents.org/goto/larrylewis 

I feel pretty good most days, and I am thankful to still be able to do most everything I want to do, with caution to avoid infections and bleeding. I've been working plenty of hours the last few months, and looks like this year will be the same. But even as mild as this winter has been, I am still anxious for spring and summer to get here. Thanks to all for your continued support, your friendship and your prayers.

1/9/15:
 I completed 3 months of twice-a-day Ribavirin for Hepatitis E this past Monday 1/5/15. I was the first case of Hepatitis E they ever had seen at UVA. And today I had a follow-up exam at UVA. An intern came in and said 'wow, you are probably the only Hepatitis E case I will ever see in my life!' So, I guess it really is pretty rare. A nurse had been in touch with me a couple of days every week during that 3 months, but I had not met her. She dropped in to say hi, and said to the other nurse 'he looks good on paper, and looks good for real' or something like that. I had been admitted in July 2013 with 8 liters of infected fluid in my abdomen due to cirrhosis of unknown cause. I was really sick, and checked myself into the UVA ER on a Sunday night. Most of the fluid was withdrawn that very night, in the ER, by an intern. I remember asking him before he started how many times he had done this procedure. He said I was his first! Not good! There was a doctor with him though, who had done it many times. It went about as well as it could go I guess, but still was no fun. But I felt so much better aft ward. I was there for a week in July 2013. At the time they did not know what was wrong, just that I had cirrhosis.
I had heard that lots of people with cirrhosis like mine have to come back every few weeks to have fluid removed. They were amazed that I have not had to come back for that since that first time. I told them it was no fun, and I made sure I took my medication faithfully, and kept my sodium intake under control, because I did not want to go through that again, if I could avoid it. My weight has not varied more than a couple of pounds over the last year or so. That also amazed them.
About 3 weeks into the 12 weeks of Ribavirin, my AST and ALT liver enzymes had dropped from 10X the normal maximum to the normal range. They have stayed there since then. So it appears to have been working. Today they had forms to fill out to send blood samples to the CDC for PCR testing for Hepatitis E. It was the CDC that first confirmed what I had, the Mayo Clinic and UVA could not confirm it with other types of testing. It took almost a year for them to figure it out. So I gave them a sample of blood today, and the nurse who took it was from an Asian country, maybe Japan, not sure. An older, experienced lady. She was surprised at the orders to collect for the CDC tests. She had never seen a Hepatitis E patient either. We talked about that it was more common in Asian countries. I told her I had not been in that part of the world since 1988. She said it could have taken that long to show up. Interesting. And also interesting, in sitting there in that clinic today, all of a sudden I recalled that our first day in Taiwan in 1988, a government law required me and others on my team to have blood tests prior to going to work at their reactor site. This was to have proof that we had not had any high level radiation exposure before going to work, so an accident occurred, there would be no question about when or where it happened. We drove outside of Taipei to a countryside, small, dirty clinic for that blood sample. I had forgotten about that (one of those things you don't want to remember). It was not very clean. None of us liked being there. We were not told until we arrived at 7 AM that morning on China Airlines that we had to have that test. So thinking back, IF it is true that it could take that long to show up, it is possible that I got it in the Taiwan clinic, or in the drinking water, or even in the food, in Taiwan (I know now from other foreign trips that I should have drank only Coke while I was there!) There were a couple of meals I recall that we really had no idea what we were eating. A mixture of various meats. (And I don't recall seeing any healthy dogs or cats on the streets). There was also an out of control plague going on back then, I even saved a newspaper clipping about it. At the time, it was the rainy season, a typhoon was offshore (hurricane) and Dengue Fever was rampant. It is spread by mosquitoes. As far as I know, none of us got sick while there or afterward. But all that does make me wonder.
The UVA doctor was happy with my progress and said I looked great. They said it takes 3 months for my cells to get saturated with the Ribavirin, and it will take that long again for it to all get out of my system. During the next couple of months, they are sure I will start to feel much better. My RBC and HGB should go back up. I've had a chronic cough, and itching, both of which they say should go away. I sure hope so, but I am not so sure about those two things. I initially had headaches and nausea from the Ribavirin too, but that went away after 2 or 3 weeks. While I was on Ribavirin, I worked quit a bit in my sub-contractor job, both at home programming, and at work doing leak testing, during October-November, and the first 2 weeks of December. I was hoping to not be working while also taking the medicine, but I handled it OK. I just slept later, and worked afternoons and sometime in the evenings.
I will have a new type of ultrasound in February at UVA as a baseline, it includes a new method called Elastography. I have not yet researched to learn what it is. Then in July, a regular ultrasound here in town, then next January 2016, another ultrasound and office visit at UVA. I will still have to continue taking the current medications to avoid fluid buildup and prevent infection. I've been on them for about 18 months now. I will have to continue to get local blood tests locally every 3 months to keep an eye on liver enzymes. I was already doing that anyway to keep an eye out for an MCL relapse.
The end of March, I go back to UVA for an already-scheduled six-month follow-up with my main oncologist. As far as I know, I am not having any signs of relapse with the MCL. Based on some recent statistics that were published, most MCL patients that stay in remission for several years begin to relapse at 10 years or less. After 10 years, the number of survivors drops significantly. So that was not good news, but it does not surprise me. Over the past 5 years, UI have communicated and even known other MCL patients who have passed away now. I am on a message board with over 500 other MCL patients worldwide. A spreadsheet with statistics on survival, treatments, etc, is updated every 2 months. Every time one passes away, especially if it is one I had communicated with, it makes my more aware of my own immortality. I try to not dwell on it. I know God's timing for each of us is perfect.
I've been in remission for a little over 4 years, and in May 2015, it will be six years since I was first diagnosed. Almost no one goes without relapsing, with MCL. Each relapse, it is harder to achieve remission, your bone marrow can not handle but so much chemo, it will quit working, and older age comes into the picture too.
I am looking forward to feeling better this year as the Ribavirin gets out of my system. And I am thanking God daily, if not more, for the strength and the courage to try and stay healthy and be positive, and for the support of my family and friends, and for good doctors and nurses.

12/5/14:
  The Ribavirin has brought my liver enzymes into the normal range. I have taken 8 out of the 12 weeks of the medicine, and it had some side effects. As predicted my red count and hemoglobin are down. And I have felt tired. During the first few weeks, each time I would take the medicine I had headaches and felt nauseous. That has gotten better, but I am still tired, and in spite of that, also don't sleep well. I really need more sleep. I have updated the Excel spreadsheet showing the counts I've been tracking since May 2009. You can easily see the trends in the last few weeks. Its also easy to see when I was at UVA for a week in summer 2013 with fluid buildup in my abdomen. That is what triggered the investigation to determine what was going on with my liver. I have been working more than expected during November and some already in December. Now if I can just hang on during the busy Christmas season, and not get too run down, and finish the last 4 weeks of the Ribavirin, then I will go to UVA the first week of January 2015 to be checked for the HEV virus, to see if the medicine has worked. Then, I will go back in 3 months for follow up testing. I am also scheduled to see my oncologist at UVA around mid to the end of March 2015. In May 2015, it will be SIX years since I was diagnosed with Mantle Cell Lymphoma. As of this past August 2014, I had been in remission 4 years. I feel very, very blessed. This year alone (2014), so far, 15 people that I know have passed away. In 2013, there were 10. In 2012, there were 7, including my older brother and my dad. That is 32 people in 3 years. None of us live forever, so make the best of your time, tell those you love that you love them, and how much they mean to you. They (or you) may not be here next year for you to tell them. Merry Christmas to all who follow me here on this site, and through Facebook or email.

10/13/14:
  I started a new medication on Saturday 10/11/14. Ribavirin, an anti-viral medicine, normally used for Hepatitis-C. It is being given to me for Hepatitis-E, a rare virus in the USA. (This is the 2nd rare disease for me.) The plan is for me to take this for 3 months (one capsule, twice a day), but because it lowers red count and hemoglobin, I have to get my blood tested once a week.  
   If any of my blood counts get too low, the treatment will be suspended until they recover.
It took about a year for UVA, Mayo Clinic and CDC working together to figure out what they think is the cause of my liver cirrhosis. In late 2013, UVA had told me they thought it was auto-immune hepatitis. But my research indicated that some of my blood counts and symptoms didn't match that diagnosis. UVA wanted to start me on Prednisone and I didn't like that idea either, since the diagnosis was not really a positive diagnosis, more of a subjective guess based on blood test values, not on any real, unique identifier. My ALT and AST had been about 2X to 3X higher than the normal high since early 2010 (ALP is fairly normal). AST and ALT were normal all during 2009, while I had been on quite a lot of chemo (R-CHOP for 6 months and then 3 treatments a week long of R-hyperCVAD). The AST and ALT went up about the time I started a 3rd type of chemo (Velcade) for Mantle Cell Lymphoma in spring 2010. And the values stayed around the same level for several years with no signs of cirrhosis.
   In mid 2013, I had a buildup of fluid in my abdomen. My AST and ALT moved up to 5X the normal high. More testing (antigen testing) by UVA showed it was possibly Hepatitis-E. Then a re-test by UVA and Mayo Clinic indicated it was NOT Hepatitis-E. Those tests were all antibody tests.
   Because of the inconclusiveness, another sample was sent to the CDC in Atlanta. They did the antigen tests which came back positive, but also did a more accurate test (PCR test). That test also came back positive for Hepatitis-E, but at a very, very low level. Values can range into the tens of thousands, but my value was only 41. I read up on HEV and one thing I found was that there have been known cases of low-level chronic HEV in patients with compromised immune systems, which would fit my situation, especially back in 2009-2010. Most people who get HEV get it from unclean drinking water but it can come from transfusions (I had some in 2009) or a few other sources. Most cases are in under-developed areas of the world, especially in southeast Asia (I did travel to Taiwan, but that was way back in 1988). Other cases were noted to have occurred in Denmark, and I made 10 trips there in the early to mid-90s. Somehow, because of the low level from the PCR test, I still have a slight amount of doubt about the diagnosis. I read that people with HEV have an elevated ALP and mine is not elevated, only the ALT and ALP are elevated (well now my Bilirubin is also going up, because of the cirrhosis getting worse).
   The UVA liver specialist's nurse assigned to work with me during the treatment period said if I really do have Hepatitis-E and had started taking Prednisone, it would have made me much sicker, very quickly. So good thing the doctor at UVA and I talked about my case on the phone over several months' time, and I questioned it, before I did start on Prednisone. On the other hand, if the diagnosis is wrong, and it really is auto-immune hepatitis, I don't know what the Ribavirin will do, make me better or make me worse.
   A person with a normally functioning immune system will destroy Hepatitis-E on its own. Looks like my system almost destroyed it, but not completely, and the ongoing infection in my liver most likely caused the damage. (I do still wonder about damage by Velcade). On September 29th 2014, UVA did a liver biopsy. I have not seen the report, but the doctor called me and said there was "a lot of inflammation". He really didn't say much more about the biopsy. I am anxious to see the report, and hope to get it this week. I want to know if they learned anything else. After all, the doctor told me I was their very first case of Hepatitis-E. That's why they got the CDC involved. I also found an online report dated March 2014 that showed 50 of 59 patients with HEV were cured (the virus was eliminated) using Ribavirin for 3 months. And that 7 of the remaining 9 were also cured by taking it longer. I could not find any reports that indicated that the damage already done to the liver in this situation would repair itself. The damage is scattered throughout the liver and those scattered, damaged cells are non-functioning. But people do survive without having a fully functional liver (but it sure would be nice if it did repair those areas!). The first couple of days on Ribavirin have not been so bad. I have tried to get extra sleep and hope to do that all through the treatment. But I did have some nausea the first day. You are supposed to take the medicine with food. So when I felt nauseas, I ate a little bit, and that did help. Drinking plenty of water helps too. I am not really looking forward to all the needle-sticks over the next few months, or to my hemoglobin being lower. It has been on the bottom edge of normal for several years, but I have had plenty of energy at that level (around 12 to 13). I remember in 2009 when I was first diagnosed with MCL it was only 6.3 and I still remember how weak and tired I was back then. Supposedly the blood tests will help me monitor things and if HGB gets below 9 or 10, they will either lower the dose or give me a break to let it come back up some. I should be able to handle that. Here's list of side-effects: http://www.webmd.com/drugs/2/drug-21961-1279/ribavirin-oral/ribavirintablet-oral/details/list-sideeffects
   So hopefully by Christmas this year, I will not have Hepatitis-E, and hopefully also, the MCL will not be back anytime soon!

6/11/14:
Since my last update in December 2013, I have been doing well, no colds, no fevers, able to do most anything I want. But I have been trying to keep my sodium intake down after the fluid problem back in June/July 2013. I am still on a low dose of Lasix every other day, and Aldactone every day, and Cipro once a week, to try and fluid buildup and prevent infection. This combination seems to work well. I do notice if I miss taking the Lasix more than a couple of days, fluid can start building up again. But so far, it goes away when I get back on track with the medicine. It is a nuisance, but it is working, so no complaints. I've been through a lot worse, I am happy to have felt this good for this long (almost a year now).

I have not had any chemo since August 2012. No CT scans, and no PET scans. I do still have blood tests, now every other month. And still see my oncologist at UVA (Dr. Michael Williams) every 6 months. The best they can tell, I am still in remission from the Mantle Cell Lymphoma. I don't have any symptoms or signs of lymphoma. So that is a good thing. May 1, 2014 marked the 5th year since the MCL diagnosis, and I have been in remission now since early August 2010, so that is coming up on 4 years in August, 2014. It is almost certain to come back one day. It is actually rare for it to NOT come back. Although a lot of people with MCL are staying in remission longer, and treatments are getting better, with fewer side effects and longer remissions.

After last summer's episode with the 8 liters of infected fluid withdrawn from my abdomen at UVA, and the discovery of some liver cirrhosis, the liver specialist at UVA (Dr. Stephen Caldwell) started trying to determine the cause of the liver damage, since I rarely drink any alcohol (now, I never drink any). I have had ultrasounds every 6 months to monitor for any progression or tumors, but so far it seems to be stable. At first, UVA said they suspected "autoimmune hepatitis" and wanted me to have a liver biopsy to confirm it. They had ruled out Hepatitis A, B or C, and I had been re-immunized last fall for A and B. The treatment was going to be prednisone. I was not too excited about doing a biopsy or about prednisone. So we delayed doing anything at all for a while.

My liver enzymes (AST and ALT) are 5 times the normal maximum value. They have been that way for about a year now. Damage may still be occurring. The values were 3 times the normal maximum since spring 2010, but we never have determined why. I always thought it was from the chemo Velcade, which I had 16 injections of in spring 2010. The values were normal before that. UVA does not think it was the Velcade, although liver damage is stated on the manufacturer's website and brochures as a possibility. When I was at UVA last summer with the fluid, my AST and ALT dropped to normal for the entire week I was at UVA as a patient. No one has ever been able to explain the reason. I asked UVA again today, and they did not have an explanation. It really puzzles me, it could be the key to a cure for my liver problems.

Earlier this year, UVA decided to do some other tests. They decided to have Mayo Clinic check my antibodies for Hepatitis E. I had never heard of that, and most everyone I talk to hadn't either. My research shows there were 100,000 cases in China from 1986-1988. That was interesting to me, since I was in Taiwan in 1988. But in most countries, it is very rare. UVA and online sources tell me you can only get it from fecal material in drinking water. (Although tonight, I talked to the liver specialist and he said I could have also gotten it from undercooked pork, including bacon). Yes, my UVA liver specialist called me this evening at home. Another interesting thing I read about on the CDC website was that they can determine what part of the world the virus came from. Some of the samples they have received in the past two years were from Denmark and France. And I have been to both of those countries about 10 times in the 90s. UVA said they did not know how long it might take to show up, once exposed. But it was so long between my last trip in 1997 and the time my AST and ALT values went up in spring 2010, I doubt it is related.

The first test done by Mayo Clinic came back saying "Positive for Acute Hepatitis E". Well, that was a surprise. I decided maybe I should do the biopsy. I read up on treatments, and there is only one drug used in China (called Ribavirin), and it is not approved for Hepatitis E in the USA. It is approved for use for Hepatitis C, which is similar.

Most people's immune system will kill the Hepatitis E virus. My weakened immune system back in 2009-2010 must have not been able to kill it. Even now, it must not be able to kill it. But maybe over enough time, it could. Or, it could get worse.

A month went by and UVA decided they wanted to do a different test. They had been talking to the CDC about my case, since it is rare in the USA (even more rare than the rare Mantle Cell Lymphoma that I have). The CDC is interested because they are seeing an increase in Hepatitis E in the USA over the past few years. However, out of the 100 or so samples sent to them, only about half were positive for HEV (it is a virus). The first sample of blood sent to Mayo Clinic for testing was taken in Lynchburg at Pearson Cancer Center. UVA asked me to come there to give them this sample, since it was going to the CDC for testing.

Within a week, I got some results back. Some of the blood had been sent to Mayo Clinic - again - for testing for the HEV antibody. The rest went to the CDC. And the 2nd test done by Mayo Clinic (same test they ran on me a month earlier) - came back negative. No sign of HEV. It would be another week before I got the results from the CDC. That was tonight (Wednesday 6/11/14. - Interesting - I am posting some info on the 611 train tonight on FB).

The UVA liver doctor said I was his first HEV patient. The CDC ran two different antibody tests, and a PCR test. All three were positive. However, not being familiar with the reported values, the UVA doctor was not sure if it was a mild case, average case, acute case, etc. He will be calling back to talk to the doctors at the CDC next week. Meanwhile, he said the treatment would be the Ribavirin, and he wanted to start me on a trial for 3 months on it. If I started now, that would carry me right through vacation in August. Since the main side effect is low hemoglobin and red counts (anemia) and fatigue that would be expected with anemia, I was not excited about starting just yet. I do plan on doing the Ribavirin, but since I am holding my own right now, we discussed waiting until mid-August to start. He seemed to agree, there does not seem to be a big rush right now.

The doctor had been wanting to do a liver biopsy since last year. He knew I was not excited about it. So after 3 tests showed positive for HEV, I asked him why he had not mentioned the biopsy to me tonight. He said he knew what my answer would be. Then I asked him what did he think he could learn from a biopsy now that we had these results. He said probably not much, but that different viruses look different under a microscope, and he could better confirm the test results. I asked him if a biopsy would change the treatment, and he said no. So that was the end of the discussion about a liver biopsy, at least for now.

We then discussed the anemia side effect. I told him that in May 2009, my hemoglobin and red count were only half of the normal value when I was first diagnosed with MCL. I was very tired and weak, so I know what that is like. My bone marrow has probably been damaged some by the MCL and also by the chemo that I had over 15 months to get into remission. But the past few years, my hemoglobin and red count have been in the normal range, although slightly low, still, it is normal, and I have plenty of energy most of the time. So I am assuming my bone marrow is working well enough that I would recover from the side effects of the Ribavirin. He and I agreed that he needed to discuss this with Dr. Williams (my UVA oncologist) to make sure he agrees.

The success rate of Ribavirin is only about 60% to 70%. It is not a sure thing that it will help me get rid of the HEV and get my counts down. Damage already done to my liver may or may not heal. But hopefully it will get no worse, and I will handle the treatment OK. I have read that some patients have to be on it for up to 9 months. That is a long time to be tired!

So that is where things stand. These last 10+ months have been tough for us, since Susan's mom had a stroke back in early August at age 90. She did not recover use of her right arm or leg, her mind is not clear, and her speech is sometimes difficult to understand. She has been in a long term care facility ever since. In order to get her on Medicaid, Susan and her brother had to sell their mom's house. We were very lucky that it sold quickly, but it is a sad situation, because she can never go home again. It takes two strong people to get her up, dress her, bathe her, take her to the bathroom. We do get her out occasionally, but not often. Susan or someone in the family visits her several times each week, and we are taking care of keeping her clothes washed and other things we can do for her in her room.

Sorry to have been so long between updates, but there really has not been any change in my health since last summer, thankfully.

12/31/13:
  
In October, there was a jump from 3x normal to 5x normal on my liver enzymes. They had been elevated to 3x normal since 2010. In November, I got a call from the liver specialist at UVA (Dr. Caldwell). He said he suspects that I have autoimmune hepatitis. I had checked negative for Hepatitis A, B and C in June/July. And I received immunization shots for A and B and boosters for B since then (one more to go). UVA wants to do a liver biopsy. But something he said during our conversation caught my attention. I have always collected and graphed my blood counts in Excel since 2009. You can see things in graphs that are hard to see in lists of numbers. I did not get copies of ANY of the blood tests during the week I was a patient at UVA. The doctor mentioned during that short phone call that he was concerned because while I was there at UVA, my liver enzyme counts were normal. What!? They have not been normal since spring 2010! I filled out forms and requested and received copies of all my blood tests for that week. Sure enough, after the first day or so, they were all in the normal range (AST, ALT, ALP). Looking at it in a graph, it was an obvious dip just for that one week. I am now on a mission to figure out what was different during that week. While I was at UVA that week, vitamins I normally had taken, I did not take, Prilosec I normally took, I didn't take that week.  I have cut out the 3 vitamins and Prilosec for now. My next blood test is January 13th, 2013. It will be interesting to see if NOT taking those 4 things affect my liver counts. If they don't, I will have to dig deeper. Something was different during that week at UVA. The water, the food? Antibiotics? Other medicines I received that week? This will be interesting if I figure it out. For now, the liver biopsy is postponed.
  My sleep schedule has not been right since I was a patient at UVA in July. I can't get to sleep before 2 or 3 AM most nights/mornings, but when I finally do, I sleep late the next morning. I am working on that too, trying to get it shifted back to normal.
   So as far as I know, the Mantle Cell Lymphoma is still in remission. Although it has been over a year since a PET scan and longer since a bone marrow biopsy. But no indications on CT scans or in the blood work. No night sweats or fevers. There has been some ominous aching in my upper legs, which I had before my initial diagnosis in 2009. The next scheduled visit with Dr. Williams at UVA (MCL specialist) is in April 2013. My family doctor (Dr. Stowers) says he is retiring around March 2014. And my local oncologist is considering retiring too!
   In 2013, I saw the passing of several friends and a family member (by marriage) and also, one local MCL patient. Two other friends are fighting cancers right now, and have a tough battle on their hands. My mother-in-law has still not regained the use of her right arm and leg, and remains at Fairmont Crossing rehab facility in Amherst for long-term care. She is 90 and was very, very active prior to the stroke. Her mind also is not working very well since the stroke.
   I am still sub-contracted to work part time in 2014 with AREVA. That started in September 2012, right after I retired in August 2012. The work is mostly doing what I've done since the 70s, writing and maintaining custom software. Some of it can be done from home, and that's always nice.  Overall, I am doing well and so far this fall/winter, I have avoided sinus infections and other bugs going around.
   Merry Christmas & Happy New Year to all my fellow Bees and Brookville/Timberlake Community.

11/14/13:
I should have written this on the infamous date 11/12/13. Oh well, too late now. There's always 12/13/14 next year. Tuesday 11/12/13, I went to Pearson Cancer Center for the monthly scheduled blood tests. I have had these at least every month since May 2009. I've been worried about liver enzymes after the liver problems that were discovered this past July at UVA, with infected fluid in my abdomen (ascites). The liver enzymes have been high ever since the chemo Velcade in 2010. But on October 1st, they all jumped up higher than they have ever been. For example, my ALT was 245, the normal is 10-40. It had been running around 150 the past couple of years. UVA sent me for a liver ultrasound, and more blood tests. I had already had all that done back in July at UVA and was scheduled to have another one in January. But the big jump was alarming. I have been feeling pretty well since July, and have been getting my energy and strength built back up, and gaining my weight back (without gaining weight from fluid). The more recent ultrasound showed the same thing seen at UVA in July, cirrhosis, but no masses or other problems. Blood tests this past Tuesday showed that my liver enzymes were back down to where they were earlier this year. Still high, like they have been since 2010, but at least they went down, thankfully. No one really knows why there was a jump in the liver enzymes, or why it came back down, a little scary.

My platelets continue to be low (only 56K, normal 140K-440K). But no problems from it. I just have to be careful and not get cut badly. My red count and hemoglobin are climbing slowly back toward normal. All of 2012 they had been dropping. But hopefully now they will get back into the really good readings. Getting close to normal now on those. I need more sleep, but other than that, I have been doing well. No fevers, no pains, no night sweats, no enlarged lymph nodes (except my spleen is still larger than normal). I'm on new medicines since July for the fluid. I am on Aldactone every day, Lasix every other day (small dose), and Nadolol to try and keep pressure off the veins in my esophagus (due to portal hypertension, caused by the cirrhosis and damage to my spleen). Nadolol is a blood pressure medicine (beta blocker), not that I ever had high blood pressure, but just to keep it low. Normally I was 120/75 or so, with a 65 to 70 heart beat. I have to take only 1/2 of a Nadolol because a whole one drops me too low, and I get dizzy. With the 1/2 pill, it hangs around 105/65 and heart rate around 60. (With a whole pill, it dropped once to around 85/48, and I didn't like that!). So on days I take Lasix, I have to hang around home for a few hours, even the smallest dose seems to work pretty well. I started out taking that every day, but around August, UVA cut it back to every other day because I was doing so well.

The past couple of months I have been pushing the limits on the low sodium diet they put me on, designed to keep the fluid down. The first couple of months, we ate almost exclusively at home, Susan cooking low sodium foods. But lately we've eaten out more, I just try and keep track of the total sodium for the day (my limit is supposed to be 2,000 mg/day). Some days I know I've blown it, so the next day I will take in lots less than 2,000 mg. If I notice any fluid building up, or think I might be at risk of doing that, I will take a Lasix on the day I am supposed to skip. So far it is working. I also take Prilosec OTC daily, and Vitamin D3, B6 and B12 (for the past 4 years). The vitamins were not prescribed, but I started them in 2009 after some research of my own.

The surprising news Tuesday after my blood test and office visit was that the doctor said to come back in 3 months- NOT NEXT MONTH! It reminds me of when I stopped the chemo maintenance in August 2010, it was like a security blanket. I adjusted to no more chemo, and now I am going to adjust to NOT having monthly blood tests. It is a mental thing, I have to think positive, and not stress about it. But also pay attention to how I feel and any symptoms. It is hard to imagine that for my first 59 years, I rarely had any blood test, and was never on any prescription drugs.

I will see my family doctor next week (previously scheduled) and then there are no plans to see any doctors until February 2014. Hopefully this year, I will avoid any bugs going around. Last winter, I had a sinus infection off and on for several months, which was leading up to the buildup of infected fluid. I had low grade fevers off and on all winter, and several rounds of antibiotics. It was diagnosed as a sinus infection, but I think now it was the infected fluid all along causing the low grade fevers.
I know God has blessed me with more time with my family and friends, and for that I am grateful. All around me, it seems we are losing family and/or friends more and more often. In 2010, there were at least 7 people I knew personally who passed away, who were family or friends. In 2011, there were 6. In 2012 there were 7, and in 2013, there have been 6 so far. Far too many funerals and visitations lately. Losing all these people affects many of my family and friends. Some were sudden and unexpected. Some were MCL patients I have met. Some were my age, and some were very young. Dwelling on it can be depressing, for weeks, months, years. It can make us wonder why God chose to take them when He did. I don't have the answer. I can only fall back on the verse I kept over my desk for over 30 years at work, Romans 8:28. I don't try and second-guess God's will, and I can only find peace in knowing that He has a reason. I try hard to find a reason and for many, I just can't understand. But my faith tells me to trust Him. I believe the Bible, and also believe things happen for a reason. One day we may know the reason for some of these, but for others, we may never know. And I know one day it will be me, and why it hasn't already happened makes me feel that there's a reason for me to still be here. Maybe it was to be here for Susan during this time with her mom (see below), or to be able to see my grandkids growing up. On May 1st, 2009, when I was diagnosed, the 50% survival rate was 3 years from diagnosis. It has now been 4-1/2 years since then. So much has happened over those 4-1/2 years, I am happy to have been here to share in many happy experiences with family and friends, and to be there for support in their times of need. One friend called me not long ago at midnight to tell me his mom had passed away that day, he was very upset. I would like to think I helped him get through it somehow. I remember being told by doctors at VCU on December 23rd, 2009, that without a donor stem cell transplant, I would not survive another year. Now the 50% survival rate is 5 years. And there's a new targeted drug about to be approved by the FDA. A pill, with almost no side effects. It is not a cure, but supposedly is very effective for relapsed patients. Sooner or later, they say I will relapse. They just don't know when. It could be this year, next year, 5 years from now. But with my resistance staying on the low side due to the effects of chemo, and with the cirrhosis problem they say will not repair but only get worse over time, it is also possible that something else will get me before the MCL relapses.
 
Susan's mom (90), who was very independent and living alone for the past 30 years, driving, working in her yard, traveling with us to see grandkids...... had a stroke on August 12th. She was supposed to go with Susan to meet Jennifer that day in Danville (half way to Greensboro where they now live). But she would not answer the phone or come to the door. Seeing her mom on the floor, apparently having been there for several hours after her stroke, was shocking and stressful for Susan, to say the least. Her mom has been in rehab at Fairmont Crossing (Centra owned/operated, a lot like the Summit). She lost the use of her right arm and leg, her speech and swallowing. She regained her swallowing and her speech is a lot better, but after almost 3 months of therapy, she still can not move her right arm and can barely move her right leg. And her mind is not working so well either, maybe some dementia, or Alzheimer's or effects of the stroke. Last week, they stopped her therapy because of lack of progress. She will not likely ever live at home again, and will lose her home to cover expenses, and then Medicaid will kick in, at least that is what we understand. We have a lot to do over the next few months, insurance has already stopped paying for her care at Fairmont. It is a 30 minute drive each way, and we have her on the list to move to the Summit, although she has had good care at Fairmont and seems to be at peace with being there. The Summit is 5 minutes away from us.

Also in the past few weeks, one of the nicest people I've ever known lost a battle against cancer, Melanie Cosby. After intial diagnosis, she survived only a few weeks. She was my sister-in-law's best friend (Anne, who was married to my brother Eddie). Melanie was married to my sister-in-law's brother, John. It was devastating to Anne, and to Melanie's family and relatives and all who knew her. It just all happened so fast. Melanie was one of the people who was there for Anne the day my brother, Eddie, passed away. Susan and I were there that afternoon too. Things can change fast in our lives. Life is too short as it is, make sure you tell those close to you that you love them while you still can.

Since retiring in August 2012, I've been staying busy, doing some things around the house that were needed, still more is scheduled to be done, some repairs and cleanups, etc. And I've been able to get some repairs and updates done to my VHF Ham Radio repeater on Thaxton Mountain recently too (it has been up there on the mountain, on the air, for 35 years now, and is part of the Virginia Amateur Emergency Services Network, because it is on WSET-TV's backup generator). One more trip up there hopefully before the end of the year. Thanks to those who have been able to help with that. I've also got some antennas and equipment here at home in better shape, and still have plenty of cleaning out and de-cluttering to do. I've also been doing some part time work for AREVA, and they are planning to extend that sub-contractor work through 2014, mostly for programming support. But I am happy with only a few hours a week, and thankfully don't need to work to make ends meet. At least not yet. The retiree health insurance plan I had is no longer available, thanks to Obamacare. I had a 90% after deductible plan with no lifetime limits. It was a good plan (regardless of what Obama says). Evidently it did not meet the Obamacare requirements because it didn't provide for pregnancy or drug rehab or whatever. At least I was offered a new plan, but it is not as good. And they still cover Susan, too. The cost per month is not that much different, but it pays only 80% after deductible, the deductible doubled, the co-pay doubled, the maximum out of pocket doubled. I have not yet gotten the nerve to see how much I would have had to pay back in July when I was a patient at UVA for a week. The total bill for that week was $52,000. But I had already met my out of pocket maximum. I remember that the chemo maintenance in 2010-2012 was $6,000 per treatment, and I was getting that every other month. Not even sure it is covered now with the new plan. I am sure the chemo I got in 2009 cost far more than the maintenance chemo. I think I will get to keep my doctors, but two out of three say they are retiring next year because they don't want to put up with the Obamacare paperwork!

If you want to pray, right now there are many who need prayer and support emotionally much more than me (when I pray, I always think of the acronym J.O.Y. - Jesus, Others, Yourself). My brother Keith, with Parkinson's, and for his family, my relatives who are mourning the loss of Melanie, for Susan and her brother as they make decisions about care for my mother-in-law, for all of the kids and grand-kids in our extended families, as they grow up in a chaotic world, for the people in the Philippines - that is going to be a very high death toll from the Typhoon - thousands, for the USA and Congress, out of control, and on a path of destroying the USA it seems. As Tiny Tim said in the Christmas Carol, "God Bless us, every one". I would add to that, God help us all.

8/19/13:
I'm doing very well now, and feeling pretty well overall.

However, it seems there's always something going on to challenge us. My mother-in-law, Rebecca Rowland, 90, had a stroke Monday in the early morning hours of August 12th. She had been very active, working in her yard this summer, still driving herself to church and back, to the grocery store , and traveling out of town with us to visit grandkids once in a while. She has been living alone since 1983, when her husband passed away. She's a very tough lady. After the stroke, she could not swallow, her speech was so slurred you could not understand a word, and her right arm, hand, leg and foot were paralyzed. After only a week, she has started swallowing and feeding herself with her left hand, and we can now understand about 40% of what she says, although it is still difficult for us to understand her. She still is unable to user her right arm and leg. She has been moved to a rehab center near Amherst called Fairmont, and it is run by Centra Health, and is much like the Summit in Wyndhurst. It was the only opening around here when she was discharged from the hospital last Friday.

Mrs. Rowland (Beckie) and her two sisters, Ruth and Edith, all worked in the Leesville Road Cafeteria in the 60s and 70s. Anyone of you who went there during that time will remember the awesome chili for hot dogs, and the special French toast that they served.  Mrs. Rowland has tried many times to re-create that chili recipe, but never has gotten it quite right.

This school year begins the 19th school year that I have had BHSBees.com online. That is hard to imagine. I started the website in fall of 1996. The internet had just gotten started! I hope to be around to continue this a while longer. There's a new section with yearbooks from 1937-1970. A project that was started in 2009, just before I was diagnosed with Mantle Cell Lymphoma. All the pages are there, but I have not finished the menus. Bee sure and check out the 1944 yearbook, during World War II, and the 1958 yearbook, which was the year Jim Elder graduated from BHS, he did the scanning of all the yearbook pages.

I know there are some bad links and outdated information on the BHSBees.com website. I will be working on cleaning that up some over the next few months.

Note: Updated blood count spreadsheet (Excel) is available here: www.bhsbees.com/larry.xls

7/13/13:
It has been a fair week at home, much calmer than being in a shared room at UVA. Although I am thankful because what they did that week probably saved my life, along with lots of your prayers.

The low sodium diet I am now on means rarely, if ever, eating out again in a restaurant. And we loved to eat out. Staying below 2,000 mg of sodium per day is challenging, but Susan has been working hard to come up with meals that will keep me at or below the limit. This is meant to reduce how much fluid my body retains. Basically, fluid began (evidently not long ago) to leak through the walls of my arteries, into my abdominal cavity. UVA gave me lots of supplements while I was there to help get levels of potassium, albumin, phosphor and other things, back into a normal level. Low protein in the blood is what allows fluid to leak through walls of my arteries. I had gained about 15 pounds of fluid over a 2 month period. Now I weigh myself each day at the same time, and I am on lasix and aldactone to help my body get rid of the fluid quicker than it leaks out into my abdomen.

I am still having a fever every night, between 99.5 and 101.5. This really concerns me.  During the day it is normal.

I rarely drank any alcohol, so that did not cause my liver damage. So they say the cause of the damage is unknown. I never use salt on food, so already I had been limiting my sodium intake, except for the loads of sodium restaurants put in their foods. At least two of the chemo drugs I had in 2009-2010 can cause liver damage. One of them, methotrexate, I only had twice in fall 2009. But in spring 2010, I had 16 doses of Velcade. In fact, it is what caused the permanent neuropathy in my hands and feet. The information supplied to the patient, which I have, says that Velcade can cause liver failure. UVA disagreed, but I will be showing them this information.

My spleen never came back down to normal size after chemo, and the blood flow from my spleen through my liver has evidently been restricted, causing portal hypertension and varices (enlarged veins) in my throat and esophagus. One of those can rupture and I would bleed to death. They were checked last summer and again at UVA this past week, and are "Level 1". They can "band" one that looks dangerous, but they didn't so far.

Most patients with this liver damage and fluid buildup problem end up having to be drained ever few weeks. That is not a pleasant experience. I am fighting hard to get this under control to the point where I rarely if ever need that. Although UVA said this type of liver damage rarely gets better, they did say it was not impossible. Evidently, it has been sneaking up on me for a couple of years. The fluid is called ascites, and there was some seen in my CT scan at UVA last fall, but there was no recommendation to make any changes because of that observation.

So, now I am concerned how long this can go on. Another infection in the fluid would put me back in the hospital for another week. I know my immunity is low anyway, and I am weakened and tired a lot. I've lost a lot of strength and energy over the past 6 months. I had seen a downward trend in my monthly blood counts since spring 2012. I had brought this to the attention of my doctors. The result was they stopped my every-other-month Rituxan synthetic antibody last August. I had done it for 2 years and stayed well, but it can lower your immunity every more by killing good B-cells along with bad ones. But it is a targeted drug and mostly kills bad ones.

Life has taken another turn for us, and I appreciate all your thoughts and prayers. I don't feel much like updating this page too often, but I will try every week or two. I am only able to edit BHSBEES.COM from home. So when school starts back up this fall, right now, it is unknown what my health and availability will be. The fluid is still there, maybe a little better than when I came home. But definitely still there. I would love to get rid of it all, so I can feel able to be more active and get back to some exercising, and visiting our daughter's family, now in Greensboro.

Larry

7/6/13:
I was treated at UVA this past week for sclerosis of the liver, due to an unknown cause. 8 Liters of fluid infected with hemolytic strep-A was withdrawn from my abdomen, and I was put on strong antibiotics and diuretics by IV for the past 7 days. I am back at home. but wiped out and on a strict diet (2,000 mg/day of sodium, max - not so easy to do, check out the amount of sodium in everything you like to eat!).  I will be on diuretics and antibiotics rest of my life UVA told me. This involves many trips to the bathroom for most of each day. They also said this condition will most like never improve, and will only get worse over time (hard to know how long). I have to go back to UVA Thursday for an endoscopy.  And most people have to get drained of their fluid every few weeks and that is not a fun process. I may not be eligible for a liver transplant due to low immunity from the lymphoma and chemo I received for lymphoma.

August will be 3 years since I got into remission from Mantle Cell Lymphoma. Now I have 2 medical conditions to manage, and walk on a tight rope with this liver problem. I was doing fine up until this spring. It has been a good 2-1/2 years of remission.

6/29/13:
Susan is driving Larry to UVA this afternoon to check into the UVA ER for multiple problems.

We don't know the prognosis or the length of stay or the treatment. We could be there for days, or even weeks doing tests and surgery. Please pray for positive results and a quick and successful treatment.

 

Larry & Susan

4/4/13:   Overall, I had a good Dr. visit Tuesday 4/2/13. Most counts are stable, or slightly improved since last month. Some are much better than in January this year. But many are still low, and have been all along. I would like to see my red count and white counts come up some more.

Dr. Williams at UVA is still talking about spleen removal. My counts may have been down over the past few months from infections, they are slowly getting better. Not back where they were in 2010-2011, but at least not continuing to drop. Platelets are still very low, but they did come up to where they were last fall.

So I need to decide if I want to do the surgery and have my spleen removed. Dr. Williams he would prefer me to have the surgery at UVA, if I decide to do it. And I agree. He said more and more, they are doing splenectomy with laparoscopic surgery, so recovery is quicker, risk is lower, and I would be in and out of the hospital in a couple of days, assuming no complications.

Retirement has been good, and I have been working some as a contractor back at the same AREVA location, but more hours than I'd like to have. The longer hours will continue probably for the next 8 to 10 weeks. Hopefully I will stay well and handle it OK, and then be able to take some time off for vacation, and then maybe the splenectomy after vacation. This is a very hard decision for me. Not as hard as whether or not to do a stem cell transplant. May 1st, 2013 is 4 years since I was diagnosed. August 2013 will be 3 years since remission. Relapse is still a possibility (and always will be), even if I do the splenectomy. Before I would have the splenectomy, there would be a bone marrow biopsy to make sure my bone marrow is making all the proper quantities of each cell type. This is what I expected and I am OK with that. If my bone marrow biopsy isn't making the normal quantities then maybe it is because of damage by chemo in 2009-2010, and a splenectomy may not be worth the risk. If my bone marrow is working normally (which it was last time we checked in August 2010), then the splenectomy might be worth doing. It has the possibility of getting ALL my counts closer to the normal range, especially my platelets. My immunity for some types of infections would be lower afterward. But people do live long, healthy lives without their spleen. It is like a big lymph node, and filters blood. In my case, it is trapping good cells in addition to bad cells. At least that has been the theory all along.

I still have to continue with the monthly blood tests here locally at Pearson Cancer Center. My next UVA visit with Dr. Williams is scheduled for October 1st.

Thanks to all for your positive thoughts and prayers!

4/1/13: 
On Tuesday 4/1/13, I will be going back to UVA for a six month follow-up. For the most part, I've recovered this winter from a bad bronchitis infection around Thanksgiving, a stomach virus in January, and a 4 week long sinus infection. I am a little tired, and I am concerned that my blood counts continue to drop. I've signed up for my 4th Relay For Life, which will be at Heritage High School on May 31st. You can make a donation to the American Cancer Society on my Relay For Life page here:
http://main.acsevents.org/goto/larrylewis   - Thanks in advance :)  As soon as I know anything from my UVA visit tomorrow I will update here and on Facebook ( www.facebook.com/larryandsusan )

2/8/13: 
On January 18th, I had been feeling real good for a few weeks, but that afternoon my heart rate shot up to 110 bpm and I started having shakes and a fever. The shakes lasted an hour. The high pulse rate did not come down all night, so Saturday at 7 AM I decided to go to the ER to get checked out. The EKG was normal, other than the high pulse rate. They checked me for flu and did x-rays, blood tests (some of my counts are out in left field due to my lymphoma and all the chemo I have had). My platelet count was the lowest since February 2010, before I was in remission. it was only 28. The ER doctors decided I had the norovirus and gave me an antibiotic as a precaution and told me to rest, take Tylenol and stay hydrated, and if I was not better in a few days, to go to my oncologist. I did get better, but it took several days.

Today, February 8th, I had an appointment for a monthly blood test at Pearson Cancer Center. I am not sure what to think of my blood counts today. I have not had a visit with my local oncologist there for the last few months since they stopped my Rituxan maintenance in August after two years of remission. They stopped it because my counts were gradually dropping last summer. My next appointment at UVA with Dr. Williams is scheduled for April. My platelets did come back up but not much, only 38 today (normal range 140-440). For the past 3 years, the count platelet has been between 60 and 90. My hemoglobin and white count are the lowest values since I was getting Velcade and still not in remission back in February 2010. That's three years ago. So the downward trend of my counts continues. They have been declining for about a year now and this is not a good trend. I am a little concerned about my bone marrow. I have not had a PET scan or bone marrow biopsy since August 2010. Only CT scans and blood work. But then again, I have been sick with two different bugs since Thanksgiving. The last few weeks, I have felt OK. Just hoping everything will rebound sometime soon.  I updated my blood count Excel spreadsheet at www.bhsbees.com/larry.xls 

1/7/13:  Today I had blood counts checked at Pearson Cancer Center. It is still a monthly test. Overall, today's counts were good news! Over the past few months, all counts had been dropping, and the platelet count last month, after having bronchitis during Thanksgiving, hit a low of only 40. Fortunately today, it was starting to come back up. Still only 56 (normal is 140-440), but I have been 55 to 75 for the past couple of years. Other counts which also had been dropping moved back toward my typical range, but only a little. But I am just happy to see everything stop dropping and move back toward better numbers.
   If anyone is interested, I have updated my Excel spreadsheet of my blood counts at www.bhsbees.com/larry.xls And there is more history down below from the past 3-1/2 years. May 1st, it will have been 4 years since I was diagnosed. The 50% survival rate at that time was 3 years, and since then, it has moved up to 5 years.
   I have felt pretty good the last couple of weeks. The bronchitis really got me down physically. I had a 102 fever for 3 nights, and that was after some antibiotics. But I did finally beat it, so that was a relief. At one point I thought I might have to check in the hospital. The timing of the bronchitis kept us from visiting our daughter, son-in-law and grandsons in PA, we had planned to go visit them.
   I hope the trend will continue and I can get back where my counts were in 2011. My hemoglobin was around 15, and I had more energy than I do now. It is hovering around 12 now which is the lower end of normal. I feel up to doing most anything, so that's good. I just have to continue to be careful and not get cut, and not let anything hit my spleen. It is still larger than normal, and still prevents me from eating much at once. I had been holding my weight steady in 2010-2011, but during the past few months, I lost 7 or 8 pounds, and just can't seem to gain it back. But as long as I am feeling OK and stable, I am not complaining. I am still not underweight on a BMI chart. So not too worried about it.
   In late March I will have a physical at my family doctor's office, the first time I have seen him since he sent me to the ER on May 1, 2009, where I got 2 units of blood and was diagnosed with lymphoma. Then in April, I am scheduled to go back to UVA for a 6 month follow-up. Not sure what they will do. For a couple of years after remission, I had CT and PET scans every 6 months. It has been almost 2-1/2 years since I got into remission. Relapse still comes to my mind almost every day. But I know I have been blessed with more time here with my family and friends.
  Work over the next few months is going to be busy and a little stressful, and I already knew this phase of the project would increase my hours. I would just as soon work only about 20 hours a week, but it will be more hours for a few months. I'm just thankful to be able to still work, and have a job with some great people. Yes, I did retire the end of August, after 43-1/2 years. Now working as a consultant at the same desk at the same location at AREVA Mt Athos Road. After this project is over (later this summer/fall), I am not sure how much I will be working.
  We were happy that we got to see the Brookville Bees play 5 or 6 times this year! The weather was good, and it was great to see such a talented team go two undefeated seasons back to back, and win state championships. Lots of good memories.
Thanks for everyone's support and prayers, sorry to be so long sending an update. I was kind of waiting until there was good news, because the last couple of months have been not so good, health-wise. I am looking forward to spring!

10/28/12:  I had some signs of upper GI tract bleeding over the past few weeks, and ended up having another endoscopy on Tuesday October 23rd. Dr. Nunn saw the same things he did in my May endoscopy, gastritis, erosion in my stomach and lower esophagus, and enlarged veins (varices) due to portal hypertension. This is increase pressure due to restricted flow between my spleen and liver. This is also the cause of my enlarged spleen and probably my dropping blood counts. The most likely cause of the restricted flow is due to liver damage from Velcade (chemo in 2010), but there could be other causes. To try and measure the flow, and look for other reasons for restricted flow, I am having an MRI at UVA on Monday 10/29/12. For the past couple of weeks I have been back on Prilosec, which I took a few years ago. It does seem to have settled my stomach in the right direction. Future treatment or surgery to try and improve the portal hypertension problem will be decided pending the outcome of the MRI. This will be the first MRI for me. I have had quite a few CT and PET scans.

10/3/12: 
I apologize for the delay in this update. We got home from UVA today around 5 PM and then got on the phone with several different people, and have been on the phone almost ever since I got home. Today Dr. Williams said most of the indications in my CT scan, 80% of "normal" people have these, but they just don't know it because they are not having scans. He said he didn't see any indication of lymphoma in the CT scan, and thought I was doing great. In the back of my mind, I keep thinking back to when I was first diagnosed in 2009, there were no indications in the CT or the PET scans, but my blood counts were really screwed up, and the bone marrow biopsy showed near 100% lymphoma, and that was AFTER having the six R-CHOP treatments here in Lynchburg! So looking now only at blood counts and only at CT scans to me seems to be less sensitive test methods and therefore not as likely to find lymphoma to begin with. But he is a worldwide expert in MCL, and so I have to trust his experience at some point. I have not had a bone marrow biopsy since summer 2010. And PET scans have been clear, with the exception of indications around my hernia repair, which also showed up on this latest CT scan and has shown up in every CT and PET scan since the surgery was done in 2010. This was the first time I did not have a PET scan on the 6 month follow-up exam. Only blood work and a CT scan.
   My only complaint right now is my enlarged spleen, which makes it hard for me to eat enough to gain any weight. I am around 132 to 135. While it is on the low side, at a BMI of 20 (at 5'8" tall), I am not really underweight. I was holding around 140 during 2010 and 2011.
   Dr. Williams said he thinks my damaged spleen and liver are the cause of my low platelets and other low-side of normal. He thinks my bone marrow is working normally. He said removing my spleen may provide relief and bring up my blood counts and also eliminate the discomfort and crowding of my stomach. But it is not something he wants to do unless we have to do it. I worried about low platelet count (44) and surgery and he said they have done spleen removing with platelet counts of 10 (they give platelet transfusions ahead of surgery). So to get a better look at the blood flow through my spleen and liver, and also between them, he has scheduled an MRI on October 29th just to look at that area. This will be used to help decide if it is necessary to remove my spleen, or if we can just wait. Meanwhile, we are not continuing the Rituxan maintenance. So for now, I am off any chemo at all for the first time since May 2009. A little unsettling, but Dr. Williams said that if I start showing signs of relapse, we can go back on Rituxan, OR a new drug (more below about that). I will still have monthly blood tests here in Lynchburg at Pearson Cancer Center.
   I feel pretty well overall, I have just been nervous about the indications in the CT scan report from a couple of weeks ago and the discomfort and actually mild pain in the area of my spleen. In the past, I did not have any pain there. It is not much now. It is worst if I eat a little more than my stomach can hold, and it can't hold a lot. But I think I can hold 135 pounds. I have plenty of energy, still working as a contractor about 20 hours a week (3 days). If I overlooked sending this to anyone, please forward to them or let me know. I will be putting this on my FB notes and on the BHSBees update page. More about the new drug and trial below. If I need future treatment, I hope I can do this one.
   I've been following the trials on this new drug PCI-32765 now called Ibrutinib, and I know MCL patients who have been on it, and they are doing well. Today Dr. Williams said that if I needed treatment in the future, UVA was just starting to participate in a trial using this drug (and I knew they were, but he brought it up first!), and he said I would be eligible for it. I hope if I need any future treatment (and it is likely I will), that I can get this new drug. It is an single pill, once a day, he said it works for 90% of people using it and there are no side effects (it does not affect bone marrow and cell generation (myelosupression), like most chemo drugs. The drug was first used to treat CLL (which is similar to MCL - in fact my first diagnosis was CLL).

http://en.wikipedia.org/wiki/Ibrutinib
Clinical Trial at UVA:
http://clinicaltrials.gov/ct2/show/NCT01236391
http://www.cancernetwork.com/conference-reports/ash2011/content/article/10165/2006013#

9/30/12:  The CT scan on 9/14 at UVA did not include a PET scan for the first time. The next day I came down with the first sinus problems and cold that I have had in 3 years. I mostly recovered in about a week, still feeling a little tired, but better.  There were several things identified in the CT report which said 'clinical follow-up advised'. In the past, that comment has resulted in additional tests. Once, it resulted in a needle biopsy of my hernia repair area. Earlier this year, it resulted in a colonoscopy & endoscopy. I had just started my 3rd year of Rituxan maintenance, once every other month. My next infusion was scheduled for 9/28, but my UVA oncologist told me to cancel that treatment. He did not say why, I am thinking it was because my blood counts had all been dropping for the past few months, and hoping he did it because of concern about my very low white count and neutrophil count. I have an appointment with him at UVA this coming Wednesday, October 3rd at 10 AM. I expect we will discuss the CT scan results, and talk about what he wants to do next. The things identified in the CT scan were not identified as cancer, since there was no PET scan this time. Some of the indications may just be due to my age. But I would not be surprised for the doctor to recommend at least two different follow-up tests. Needless to say, I am nervous about where this is going. Thanks for your continued prayers for us.

9/12/12: 
I will be at UVA Friday 9/14 for CT and blood tests. Hopefully this will help determine why all of my counts have been dropping. I was scheduled already for a visit to UVA on 10/3 as a six month follow-up. I am expecting additional tests after this visit, and possibly a change in my medication. I have been on Rituxan maintenance every other month for about 2 years now, and in remission. I had just started a 3rd year of Rituxan maintenance. It is NOT suspected that Rituxan caused my counts to drop, since all of them are dropping. Rituxan can cause lower white counts and neutrophils, but should not lower my red count or platelet count. It would not surprise me to end up going back to UVA soon for PET scan and bone marrow biopsy. I am still feeling pretty well overall, except my spleen which has grown gradually over the past 2 years. It is crowding my stomach which makes it difficult to eat a lot. I will put something on again when I know more after Friday's UVA visit.

8/31/12:  Today's blood tests showed that my white cells, neutrophils, red cells, hemoglobin all continue to gradually drop. My platelet count was up slightly from last month, but not statistically different, still low, only 55. All of those counts are the lowest since April 2010, when I was still getting Velcade and not in remission yet. So for about 2 years, all my counts stayed fairly stable.  My platelet count has never since I was diagnosed with MCL in May 2009, it has always been low, but during the past 2 years, it was higher than it is now, but still low. My local oncologist said two possible causes of the declining counts were my enlarged and damaged spleen, trapping blood cells more and more (and still getting larger), or damaged bone marrow. The enlarging spleen has limited my ability to eat, so I've lost about 5 pounds this year, not intentionally. There stomach is just a little over-crowded by the enlarged spleen. This was true in 2009 also. The damaged bone marrow would be from either lymphoma or chemo treatments or both. All of my symptoms point to the bone marrow damage, or myelofibrosis, where there is scarring of the bone marrow, so the quantity and quality of the stem cells generated in the bone marrow gradually decreases. These stem cells evolve into new red cells, white cells and platelets. Also the new cells may be genetically damaged, which would cause them to not function properly, and possibly be targeted by the spleen to be destroyed. The only way to know for sure if the bone marrow is functioning properly is a bone marrow biopsy. I had several at UVA during 2009 and 2010, but none since June 2010. My local oncologist said he would call my specialist, Dr. Michael Williams at UVA, and discuss it with him. I am scheduled to get another Rituxan infusion here in Lynchburg on September 28th. I last went to UVA for CT/PET scan in April, and was to go back in October. Now, I am expecting they will want to do a CT scan, PET scan and a bone marrow biopsy. I am expecting to be back at UVA probably some time in September, before I get any more Rituxan. Or, they may decide to wait a little longer. None of the counts are critical yet, but my immunity is getting very low and so is the risk of bleeding due to the low platelet count. So far, I have avoided catching any bugs or having any serious bleeding problems. Bleeding in my digestive tract is a concern. There is restriction of blood flow through my spleen and my liver due to the damage from lymphoma and/or chemo, and that causes portal hypertension, which can cause a rupture of the blood vessels in my esophagus or stomach. The recent endoscopy earlier this year did see enlarged veins in those areas. The portal hypertension also matches a symptom of myelofibrosis. There are a couple of chemo drugs to treat myelofibrosis, but the only cure is a stem cell transplant, just like that is the only real cure for MCL. In addition to the possibility of myelofibrosis, there's also AML (Acute myelogenous leukemia), which is tougher cancer and progresses faster, and my symptoms don't match as well. Both of those conditions can develop after lymphoma and chemo, and I've known that all along. The only way to know for sure what is going on is the bone marrow biopsy.
   So, as soon as I know something new, I will update this page. I did update my blood count spreadsheet at www.bhsbees.com/larry.xls
  
Thank you all for your prayers and support through these past few years. The Bees Varsity Football team is off to a great season so far, and I hope to make it to some games this year. We made it to 5 games last year. We had some schedule conflicts tonight so didn't make it to the first home game. Maybe next Friday night we will be there.

8/30/12:  Friday 8/31/12 at 10 AM, I will be at Pearson Cancer Center for monthly blood testing and office visit. The past 4 months have shown a gradual decrease each month on all my counts, after being fairly stable for 2 years. This is not a good trend. Platelet count was down last month to only 49 (normal 140-440). Over the past two years, platelets have been steady between 60 and 80, still low, but stable. It was the one of most concern. Red counts, white counts, neutrophils, all down. I felt lousy most of July and August. This week, I have felt some better, so I hope that is a good sign that my counts are coming back up some. The next Rituxan infusion is scheduled for September 28th, and the next UVA 6-month follow-up is scheduled for sometime in October. If counts are still dropping on Friday, I may try and go to UVA in September, before the next Rituxan, to see if a CT/PET scan shows anything. It is hard to think that I may be relapsing, but UVA had told me they expect relapse in one to three years. That was about 2 years ago. A lot has happened in my life since then, and I am glad to have still been here for all that has happened in the past 2 years. Losing my dad in January, my older brother in May, Susan's cousin's husband recently, and two other friends to brain cancer earlier this year. I am glad to be still here to manage my dad's estate for our family. I always think back to December 23rd, 2009, just two days before Christmas, when a stem cell transplant doctor at VCU/MCV in Richmond told me that I would not survive another year without a stem cell transplant. It was possibly the lowest point in my journey with MCL so far. If and when I relapse, there are some other targeted drugs that have been in trials, and I would probably try to get one of those before I would do the stem cell transplant, but sooner or later, it may be the only remaining treatment. Meanwhile, I have started my third year of Rituxan maintenance infusions, once every other month, to try and keep the residual disease in check. 

  Friday is also my official retirement date from AREVA. Yes, I did leave work June 29th, that was my last full day of working, but I was still actually an AREVA employee until 8/31/12. So after Friday 8/31/12, I will be an AREVA retiree!  And today, I finished up paperwork to start back working as a contractor to AREVA - next week!  I am only planning to work a few days each week, and hopefully not 8 hour days. And probably only for a year or two, depends on what work is available and my health.

   I will try and put something on here Friday afternoon about my blood count result. You can see my blood count chart here: www.bhsbees.com/larry.xls - I will probably update this spreadsheet Friday night or Saturday sometime.

Update 7/4/12:  Since the last update below, I have been very busy, getting everything at work organized, finalized, and I did actually retire on Friday, June 29th. What a day. It was also that night that the storm came through and did so much damage, and so many people (including us) lost power in the 95-100 degree heat. We were out of power until Sunday night, and getting it back that quickly was a big surprise, we had been told it would be a week. The house had been in the mid-90s during the day and we had been out checking on Susan's mom and trying to stay away until evening, but each night the house was worse. By Sunday night, it was 91 at 11 PM in the upstairs, and 81 downstairs. Then, thankfully the power came on - and stayed on. We have been among the lucky ones, because we still hear generators in the neighborhood, and some adjacent streets still have no power tonight. Some of my relatives in town also still do not have power. It is supposed to be 99 tomorrow.
    The week of my retirement was great. My group had the AREVA Skybox at the stadium Monday night. Then Tuesday we had a group of co-workers at Olive Garden for lunch, and Susan surprised me and came to that. Wednesday I met a salesman at Shaker's for lunch. Thursday we had cake and ice cream at work for a surprise retirement party for me. About a dozen former employees came in for that, along with probably 100 from those who remain at the AREVA Mt Athos Road facility. Even though over 100 have left, there is still other work going on there, but since spring 2011, no more fuel production. Thanks to a few key people who worked hard, and kept it a secret, I was given a very rare retirement gift that they knew I wanted... a custom made lamp with the center part made using fuel rod tubing and spacer grids. It is very cool, with a walnut base and plaque showing the start and end date of my working years there. We had made some of those for a few key retirees back in the 80s and a few for some of our good customers (electric utilities), but I did not think I would ever get one, because I didn't think we had the material to make one. So after 43 years and 4 months, I am now retired. It is like every day is Saturday (except Sunday of course). At work, they are so sure they are going to have me back there as a contractor that HR processed some paperwork to keep my network and email account active. I am enjoying not setting an alarm clock to go to work, but my body is so used to waking up at the same time each morning that I wake up anyway. But now if I want to, I can just roll over and go back to sleep for a little longer!  I was blessed to have a job I loved, and great people to work with. I was given many opportunities over the years by managers who allowed me to learn on the job to write programs, and over the years, there have been many very large and successful projects that I was involved in, some of them took me to Europe and across the USA, and to Taiwan and Hawaii. The people I worked with is what I miss the most. I will be keeping in touch with many of them, and have been over the past year since many of them left. I will miss programming. But there's lots of projects and things to do here at home, too. Things that got put off over the last 3 years while I was fighting the MCL.
    For me this year, the Relay for Life event got all messed up. We arrived and I went to get my Survivor's shirt in the Heritage High School gym, and on the way back to the track, the security people started telling everyone to get off the track and into their cars or into the gym. So I sat in my car as a storm passed over. During that time, the starting ceremonies (Survivor Lap, etc) took place in the gym, but I never knew that they started. The rain continued for an hour and Susan and I left to get something to eat, thinking we would get back and things would just start late. But we missed a lot, and decided to go home. I felt very sad that I did not participate at the track, but I am very thankful to all who did participate and all those who donated through me to the American Cancer Society. We were all set to be there and participate until the storm came up, but we did not know things were going to be going on in the gym. We thought they were going to wait out the rain and then start the event on the track later.
    I've been very busy over the past few months working to coordinate getting our dad's house cleaned out, paperwork processed for a buyer, and we hope by the end of this week to have the house completely empty, and sign papers next week. That will be a big relief for me. We are all really grateful to have found a buyer so soon. Pray that it is all completed next week with no problems. Also since the last update, Susan and I took a few days off and went to visit our daughter, Jennifer, in central Pennsylvania. We babysat our grandsons (Zack, 9, and Ryan, 5) from Wednesday night until Sunday, while Jennifer and Fordys went to New York City to be part of a wedding. Then Sunday Fordys had to go to Cleveland with the Marines, and Jennifer and the boys followed us back to Lynchburg and stayed with us until Friday. Jennifer took me to my Rituxan infusion that Wednesday, June 13th, and brought me back home. That was my 25th infusion of Rituxan since I was diagnosed in May 2009. The Rituxan does not bother me, but my sleep schedule gets all messed up for a few days. UVA has me scheduled for 12 more months of Rituxan (6 infusions).
   My next blood test is July 18th, and next Rituxan infusion is scheduled for August 8th. I may move that up to Friday August 3rd. Overall, I have been feeling pretty well, but had frequent dull headaches. But I hear other people say that they have had them too. I definitely had one all afternoon Saturday with no A/C. I have not gained back the weight I lost a few weeks ago but I am not too worried about it. For my height, I would have to be 10 pounds lighter than I am now to be considered underweight on the BMI charts. My BMI is 19.9 right now, and most of my life it was around 22. It was never above 24. I am hoping after next week to try start getting 8 hours of sleep each night. I feel better when I can do that, but it has been hard to do in the past few months. Thanks for your continued prayers and emails. There are many, many people these days on my prayer list, I feel very fortunate and blessed to still be here and to have been able to work and retire.

Update 5/18/12:  Retirement has been pushed out to the end of June. I guess that is OK, another month's pay is nice. The Dr. did take some biopsies of my stomach and lower esophagus during my recent endoscopy/colonoscopy. He saw some erosion and irritation. The results of the endoscopy said no bacterial infection found. Mild gastritis noted, consistent with varicose veins seen in the lower third of my esophagus (Grade I). This is due to slightly higher pressure in the vein system that leads to my liver. In the report, it is described as portal hypertension. I knew that was going on, but did not know it would cause the gastritis (portal hypertensive gastropathy). Biopsy ruled out out H Pylori bacteria. They did find duodenal erosion, 'related to stress or illness most likely'. Four localized erosions with no bleeding were found in the duodenal bulb. I knew there was damage to my spleen and liver. The spleen enlarged from my lymphoma (and still enlarged), and the liver damaged by the chemo Velcade, in 2010. My liver enzymes were fairly normal before I got 16 doses of Velcade, but that was the third type of chemo in less than a year, and it got me into remission. It got rid of the last of the MCL. I need to find out if the damage to my spleen can be reversed. Since spring of 2010, the liver enzymes have not come back down into the good range. It would be good if there was some way to restore the normal blood flow through my spleen and liver. In the meantime, I will probably be taking some Zantac or Prilosec. I took Prilosec for acid reflux for 6 months or more back in the mid-2000s and it worked pretty well. If I have acid reflux now, I can't tell it. So I will probably take one Zantac a day for now. I lost 5 to 7 pounds during the week of my colonoscopy, and having trouble gaining it back. But overall doing OK. Looking forward to the Relay For Life on June 1st.
   During lunch break today, I visited Brookville to see Carole Stone and Mike George who are both retiring after this year. BHS will never be the same without Mrs. Stone. She took me around the school today and we visited with Bruce Abbott, Jeff Woody, Tom Cole, Cindy Tyree, Pam Stinnett, Traci Wille, Kathy Kaplan, Bunker Hill, Ashby Milstead, Larry Kidd, CoraBeth Porter. Pictures on Facebook, thanks to Mrs. Stone :)  It is always good to visit the Bee Hive!

Update 5/12/12:
 This has been a week I will never forget. Monday, I worked at my job. This is likely the last month of my normal career, as I am expecting to retirement the end of this month. I drove straight from work to my older brother's, after receiving an urgent call from his oldest son. During the next couple of hours, I watched my older brother, Eddie, breathe his last breath. It was sad for us all, but I was glad I could be there with him and his family and that Susan could be there too. He is at peace after many years of fighting MSA and Parkinson's (see my FB note). Tuesday I drank the prep for my first colonoscopy. The prep was as awful as everyone warned me, but I survived to go on to Wednesday and have the colonoscopy AND an endoscopy, which was only added to the schedule on Monday. They knocked me out very quickly after I was ready, and as everyone said, I don't remember a thing, which is fine with me. The preliminary results are that they did not see anything that looked like cancer in the colonoscopy! So that was good news. The endoscopy found what I already knew from previous years, that there is some irritation in my stomach and throat. There are indications of side effects of my enlarged spleen (from the Mantle Cell Lymphoma) and liver problems (from the MCL and also the chemo), which we basically knew already too. Now we know how it is affecting my esophagus and stomach. Some biopsies were taken during the endoscopy, so now I am waiting for those results. There is still no conclusion about the lump on the side of my throat. Four doctors have now looked at it, and they are not concerned. They did stretch my throat a little during the endoscopy. I was not expecting that! But they did not see anything in the area of the lump. The good news is that, the reason for the colonoscopy was due to indications in the colon area in the 4/4/12 PET scan, and they did not find anything in those areas. Probably it was inflammation. The doctor said he did not see anything that warranted a biopsy. I hope he is right. I got out from the procedure at 4:15 PM and had dinner with my daughter and her family at 6:00 PM, so I recovered quickly, as everyone said I would. Then Thursday evening, we had visitation for my brother, Eddie. And today, we had his memorial service, and this afternoon I had a previously scheduled blood test and office visit at Pearson Cancer Center. I discussed the report from Wednesday with my local oncologist, and the path going forward. I have my next Rituxan Maintenance chemo as scheduled on 6/13/12, and follow-up blood test in July. My next scheduled visit to UVA to see Dr. Michael Williams is on October 3rd. The 6/13 Rituxan will complete the original 2 years of maintenance treatments that were scheduled, post remission. Dr. Williams is continuing the Rituxan maintenance for at least another year, so I will continue getting those 5 hour infusions every other month. The main side effect (so far) is lower immunity. They don't make me tired, or sick, and overall I have felt great these past two years. There was a shift (down) in all of my blood counts the past few months, red, white and platelets. That was worrying me. But there has been plenty of stress these past few months, which could contribute to poor health. I am hoping that trend will not continue. Today's counts, amazingly after such a stressful week, showed a slight trend back toward normal, so that is a good sign. I hope to see some of you at the Relay For Life at Heritage High School June 1st. It is not too late to make a donation on my Relay For Life Fundraising Page here.

Update 5/4/12:
 Wednesday 5/9/12 I will have my very first colonoscopy here at Gastroenterology Associates. They are following up on the indications in my CT/PET scan at UVA from 4/4/12. In addition, even though there was no indication in the CT/PET scan in my neck area, there is a lump in my throat that has been there since January, and seems to be affecting my swallowing and my voice. Three doctors have felt it here and also at UVA, and they were not concerned, but I think it is slowly getting worse. And on top of that, tonight I found a 2nd lump down low, near my collar bone, on the same side. I have felt a soreness in that area for a week or two, but just found that lump tonight. So I have a lot of concerns between those and the indications in the CT/PET scan near my colon. I appreciate your continued prayers.
   I am still expecting to retire the end of May, but between now and then, I have plenty to keep my busier than I expected. At this point, I am wondering if I will even be healthy enough to do any work after the end of this month. It all depends on what the colonoscopy finds, and what happens with these lumps in my neck. I could be relapsing. I will have monthly blood tests on 5/11. The last 2 months there was a small drop each month in all of my blood counts, which seemed a little ominous, but not necessarily indicating a relapse. And even though I am scheduled to continue Rituxan Maintenance chemo every other month now until June 2013, there may be some stronger chemo (and maybe even some surgery) in my near future, if any of these indications or lumps turn out to be any form of cancer. I have done well over these past 3 years since I was diagnosed May 1st, 2009. And I am praying that I will be around a few more years, although that goes against the statistics for Mantle Cell Lymphoma. I am already past the 50% survival rate, which was 3 years when I was diagnosed. Thank you Lord for these past 3 years with my family and friends. Thank you all for your prayers and messages.
   Relay For Life is June 1st at Heritage High School track. I am looking forward to walking again in the survivor lap for the 3rd year. I am still far below my goal for this year's fundraising, which I set to only half of last year's goal. You can visit my fundraising page for Relay For Life by clicking here.  Sadly, this year, we will not have Greg Tibbs there at Relay For Life, but we know his family and supporters will be there faithfully. Greg and his family will be in our thoughts and our hearts.

Update 4/9/12:
I went to UVA on April 4th for an 18 month follow-up exam. It actually has been 20 months since I got into remission. I had a CT & PET scan in July 2010, another in February 2011, one in October 2011, and all showed I was still in remission. Blood counts have been stable and I have felt pretty well. A new lump on my neck showed up in January, found by my local oncologist. I am still having blood tests monthly, and Rituxan infusions every other month to try and stay in remission as long as possible. I had an infusion in February and the next one is scheduled this Friday, April 13th. The CT and PET scan at UVA last week did not see anything in my neck. But it did show some areas of concern in my colon area and intestines. So a colonoscopy may be in my near future. In addition, my blood counts for March and April show a drop in red counts, white counts, hemoglobin, hematocrit, platelets. And I have felt more tired lately. Just about everything dropped. The platelet count is the lowest in two years, at only 44K. My platelets had been stable between 60K and 100K (normal is 140K to 440K). Transfusions are done below 20K. I have not needed a transfusion since fall 2009. This could be a sign of relapse, or it could be a bone marrow problem, or cancer somewhere. So the doctor said if counts continue to drop, a bone marrow biopsy may be done to check my bone marrow's production of red cells, white cells and platelets. I have not had a bone marrow biopsy since June 2010. My spleen is larger, and has been uncomfortable lately, making it hard to eat a full meal, so it is a little of a struggle to hold my weight stable.
  At the end of May, I am probably retiring. That's the plan right now. After over 43 years at the same location, it will be quite different. If I can remain in remission and healthy, I may do some part time contract work, we will see I guess. The past few months have been stressful, with the passing of my dad in January, and I am administrator of his estate, and looking ahead to retirement and a lot less monthly income, and my own health changing, and one of my brothers, barely hanging on, fighting hard for his life for months now.
  I am looking forward to walking in the Relay For Life on June 1st at Heritage High School. This will be my 3rd year as a survivor. If you would like to make a donation please visit my fundraising page here: http://main.acsevents.org/goto/larrylewis

I updated my excel spreadsheet with my blood counts here: www.bhsbees.com/larry.xls
Thanks for your continued prayers and support!

Update 3/9/12: Results of blood tests and office visit today at Pearson Cancer Center: Blood tests still about the same. Hemoglobin down a little but still in the normal range, liver enzymes moving back down some (toward the good range for a change). Platelets still low, but stable around 60K, that seems to be permanent. Doctor thought I was doing OK. He said he was going to call UVA about my upcoming checkup there in April, and find out why they are not planning to do a CT/PET scan this time. I had one at 6 months and 12 months after getting into remission. This April will be 18 months :) I do have concerns about a lump on the side of my throat. Today the doctor said it was on the side of my trachea, and he didn't think it was a lymph gland (so not sure what it is). A CT/PET scan would possibly show something. We did not noticed it until January this year. Last CT/PET scan at UVA was last October. Overall, feeling OK, and local oncologist thinks I am still in remission. It will be interesting April 4th to see what UVA says and does when I go there.

Update 2/20/12:  I had no problems Friday February 10th with my 23rd Rituxan, the 10th of 12 scheduled over a 2 year period since remission in August 2010. It seemed like the Rituxan reduced the size of my spleen for a few days, but then it went back to where it has been for a few months.  March 9th I have blood tests scheduled here at the Pearson Cancer Center, and then a 18 month follow-up appointment at UVA with Dr. Williams on April 4th. Only 2 more Rituxan infusions scheduled, in April and then in June. After that, I am not sure what the plan will be going forward. Dr. Williams will let me know what he thinks. I had CT/PET scans when UVA said I was in remission, then CT/PET scans again 6 months later, be then 6 months after that, last October, I had CT/PET scans then too. So far with this appointment at UVA, there is no CT/PET scan scheduled. I have had blood tests monthly since May 2009, and it is hard to imagine life without blood tests or CT/PET scans. Normal life. I don't mind the blood tests at all, I want to know if anything is changing. As soon as I know what the plan is for tests at UVA and treatment later to try and stay in remission, I will share that with everyone.

  Since the first of the year, not only did we lose my dad, but my son-in-law's father has been in the hospital since January 7th, with pancreatitis. He needs his gallbladder removed, but is too weak. He is at Roanoke Memorial Hospital and has a long road ahead of him. My older brother's health has declined more. The past few days, he has had a fever over 100 and his heart rate has been over 100. We appreciate your prayers for or family.

  I signed up for my 3rd year walking in Relay For Life in Lynchburg, at Heritage High School track on June 1st, 2012. My first walk was in 2010, before I was even in remission. I still had my PICC line for that first Relay For Life. Walking as a survivor is emotional. Thinking about those who fought cancer and lost is sad, but there are many survivors who fought and won, at least for now. I try and enjoy each day, one day at a time. We never know when our lives will change and be totally different than before.

Update 1/16/12:
My dad (age 95) passed away Saturday 1/14/12. He had a long and active life, and was known by quite a few around the Brookville-Timberlake community. He raised 4 Brookville Bee boys :)  I am so glad that he and my mom picked where they did to live when we moved here in 1961.

Update 1/13/12:
All counts stable today on my monthly blood test. Platelets still low 63K. Doctor thought he was able to feel a possibly enlarged lymph node on the right side of my neck. If so, it would be the first enlarged lymph node since spring 2010. I hope he is wrong. I actually can feel and see it myself, a little. I know they can enlarge as a normal response, hopefully that is all it is. I go back for the next Rituxan maintenance infusion on February 10th. The next appointment at UVA is scheduled for April 4th. 
   My dad (95) is very weak, and we don't know how much longer he has. He really never recovered after coming home from rehab at the Summit, after his 7 broken ribs the end of September, 2011. His mind and body have declined to the point where now he is unable to get out of bed on his own. Both my dad and older brother, Eddie, are very, very weak and we appreciate all your prayers for our family.

Update 12/16/11:
Blood tests today (12/16) all still pretty much stable, thankfully. So I got my 22nd Rituxan infusion, the 9th of 12 scheduled every other month for 2 years. The next one is scheduled for February 10th, 2012. Next blood test is January 13th, 2012. It feels strange to type a date in 2012, because in 2009, I didn't think I would still be around in 2012. Each and every day is a blessing. I am feeling pretty well overall, just some occasional headaches and stomach issues, pretty much up and down some every week. Still working full time, staying plenty busy actually, probably until next spring sometime. After that, not sure what I will do, but if I am healthy, I will be looking for something to do to help offset the cost of health insurance, if I retire in the spring.  I go back to UVA in April, 2012 for re-staging. I am not sure what Dr. Williams at UVA will decide to do after I complete the 2 years of Rituxan maintenance, that will be in June 2012. I just pray that I will continue to stay in remission, and stable. I consider my remission a miracle and know that I would not have gotten there without my faith and the prayers of many friends and family. If staying in remission requires additional chemo, I will do it. There are risks with Rituxan, but so far I have handled it well. And there are people who have been on Rituxan for 5+ years. But people have also relapsed while they are on Rituxan, and a very small percentage have had fatal brain issues (PML), but I try to not think about that. There are even more risks, and limitations on how much of the stronger chemo drugs I can get if I relapse, like the ones that got me into remission. If I were to relapse (which is likely eventually), hopefully there will be some newer drugs that are not so destructive, and won't require hospitalization, which was required in order to get the R-hyperCVAD chemo in late 2009. There is a lot of research ongoing with new, less destructive, targeted drugs, and just in the last 2 years since I was diagnosed, the 50% life expectancy has changed from 3 years to 5 years. A lot of the statistics online are outdated, still showing 3 years. May 1st, 2012 it will be 3 years since I was diagnosed and probably 4 or 5 years since I actually have had Mantle Cell Lymphoma. Based on blood tests in 2005, I may have had the beginning of symptoms even then. Lesson learned: Get your annual physicals and blood tests!

   My dad is not improving from his lawnmower accident in September. He still requires someone to be with him 24/7 at his home. I am so thankful for those who have been staying with him, as sometimes he is not so easy to handle. He is 95 and has not been eating well, and not improving physically for the past few weeks. His mind is not clear, and that is getting a little worse as time goes by. My older brother's condition (Parkinson's Plus & MSA) is also no better. And my younger brother is battling Parkinson's and has moved his family to a farm outside Altavista, closer to his job in Altavista. He has been staying several nights a week with our dad and also working full time. My youngest brother is fighting back pain issues and other health issues. So for our family, we have a lot of concerns and prayers needed. I appreciate the thoughts and prayers of you all, for me and for my family.

   I hope you all have a wonderful and safe Christmas. Be sure and tell those you love how much they mean to you. Life changes fast. 

Update 11/17/11:
Blood tests on 11/17 showed all my blood counts were stable. My platelets are still low, but not critical. And my liver enzymes are still high, as a result of the Velcade chemo I got in early 2010. Seeing stable numbers is always a good thing. My spleen continues to be a little larger than earlier this year, and is occasionally uncomfortable. I had lost some weight back in October when it started enlarging a little, but I have gained it back, and I'm stable at a healthy weight. Still working every day, and amazingly very busy. (Updated blood chart - Excel)

There is so much to be thankful for this year at Thanksgiving, but also a lot to be in prayer for. I am thankful because 2 years ago (in 2009), I was at UVA, far from remission, and in the middle of some very tough chemo, 24/7, not sure if I would survive. My immunity got knocked down so low that after coming home from that first treatment at UVA that I had to be re-hospitalized here in Lynchburg in isolation for a week. Last year (2010), I did not know if I would have an income or be able to keep my health insurance much longer. Fortunately, a year later, I still have a job and my still have my health insurance, but my job will likely be ending next spring. I'm thankful to have my wife who has been there for me now for 39 years, and most especially these past two+ years, to help me though my journey with cancer. I hope if she ever needs me to care for her, I can be there for her.

As for prayer, there are many in my family who need our prayers these days. My dad, up until September, a very active 95 year old, broke 7 ribs back in late September and has not recovered. He still requires someone to be with him 24 hours a day. Also my older brother Eddie, with Parkinson's and also Multiple Systems Atrophy (like Lou Gehrig's disease) for over 11 years now. He is such a fighter. I pray for Eddie and for his wife Anne, his caretaker. No one could ever take care of my brother better than she has through these tough years. And also I pray for my younger brother, Keith, who also has  Parkinson's, yet still working to support his family.

My next Rituxan infusion is scheduled for December 16th at Pearson Cancer Center. Rituxan maintenance is becoming more common for Mantle Cell Lymphoma, but there are still some experts are not sure it is the best thing to do after reaching remission. There are Phase III trials done in Europe that show it extends remission time. I can say that for me, my quality of life has been very good since reaching remission, at least so far. I don't mind the every-other-month 5 hour long infusions, and so far I have not had any complications or infections, My next re-staging at UVA is scheduled for April 2012.

Update 10/20/11:
I had no problems getting the Rituxan and Decadron infusions today at Pearson Cancer Center. Susan dropped me off this morning, then went and got me a Hardee's Sausage, Egg & Cheese biscuit, a ritual we have on the day of these long infusions. The pre-meds and lab tests were done by 11 AM, and the Rituxan started. The biscuit was gone by 11:30 and then Susan left to go to work. Vic Bosiger came over and picked me up and brought me home, since they will not let me drive after getting benadryl. I could drive, because the benadryl is wearing off by the time the Rituxan is done. But they won't let me. The Decadron steroid will kick me into being wide awake around 9 PM tonight, and I will crash at 3 AM, that's the normal pattern I go through. Then 2 AM Friday night, and 1 AM Saturday night.

It was a real relief that the CT & PET scans at UVA on October 4th were good, no cancer detected. I had been concerned about my spleen enlarging some. It seems to have stopped getting larger, but still is a little uncomfortable. Doctors don't seem to be concerned about it. So I am trying to also not be concerned, but careful to not injure it. I have not even had a cold in past two years, through all of this, so that is really amazing. I have to attribute it to me being much more cautious about washing my hands more often and better, and maybe drinking more water and getting better sleep (thanks to Ambien).

Today's blood counts are still stable and good, except platelets are still low (66K) and liver enzymes still high (ALT=148, AST=89, Bilirubin 1.5). The liver enzymes have been high since the first few Velcade treatments in 2010. The values are about 4 times the normal maximum value. They tell me normally the liver enzymes come back down, but mine have not. And the neuropathy caused by the Velcade has never gone away either. The CT/PET scan at UVA said my liver looked OK.

I think I do see a general trend on the platelets. They have bounced around between 60K to 100K since early 2010. But this year, there's a general downward trend, and that's not good. The 66K today is the lowest this year. But that is not a critical value requiring platelet transfusions. The R-hyperCVAD I got back in October/November 2009 at UVA brought my platelets down to between 9 and 20, and I had to get platelet transfusions. A friend of mine donates his platelets on a regular basis, a nice guy about my age, who is a marathon runner. His daughter was in school with Jennifer at Brookville.

No one really knows what would happen if I stopped the Rituxan maintenance. I know two other Mantle Cell Lymphoma patients that went to MD Anderson for 6 cycles of R-hyperCVAD. One was getting theirs about the same time I got it at UVA. He has had no treatments since then, and recently he relapsed. He did not get two chemo regimens that I got. He only got the R-hyperCVAD. I also got 5 cycles of R-CHOP in summer 2009 and 16 infusions of Velcade in 2010 (Rituxan on the first of every 4 Velcade treatments). Many people on a MCL message boards believe there is an advantage to having had R-CHOP AND R-hyperCVAD. Those patients seem to do better in the long run.

So, next blood test is 11/17 and next Rituxan is 12/16. Today's was the 21st Rituxan infusion since I started treatments in May 2009. Counting the upcoming scheduled treatment in December, I have 4 more scheduled in the 2 year maintenance plan I am on, and then Dr. Williams at UVA will decide if I will continue getting them. Or stop. Or change the interval. He said he has some patients that have been on it for 5 years. As long as it doesn't cause me any problems, and insurance covers it, I don't mind getting it, because so far, I don't have any problems from getting it. My residual disease (MCL) could become immune to it, and come back, and probably will. Some people choose to not do Rituxan maintenance because they are trying to keep that from happening. But there are several other chemo drugs I could get (stronger, more side effects), and also there are newer versions of synthetic antibody drugs like Rituxan, that are reported to be even more effective but are not yet approved, but probably will be approved in the next 6 to 12 months.

I have been feeling pretty well overall and still working every day. Amazingly I actually have been busy, and have had some programming to do and a couple of projects, one for Fuel Field Services and one for the MOX facility in Aiken, SC. Hopefully there won't be any traveling involved. Still thinking they will probably let me go in the spring sometime. And still thinking that if I am healthy, I will try and work as a contractor and take on at least one project.

Update 10/19/11:  My 21st Rituxan infusion is tomorrow (10/20/11). Hopefully it will be uneventful. I get benadryl and Decadron and a couple of other things to prevent nausea and other things. So the routine is get stuck, get blood tested, get the go-ahead for the Rituxan, get the pre-meds, get the Rituxan going, eat a Hardees's Sausage Egg & Cheese biscuit, watch TV, take a nap, hit the bathroom about 4 times in the next 4 hours, then get un-stuck and go home. Total time at Pearson Cancer Center, normally about 6 hours. The Decadron normally keeps me awake until about 3 AM. Then it takes about 3 days to get back on my normal sleeping schedule. Hopefully the Rituxan is working and will keep me in remission a long time. Thanks for your prayers!

Update 10/7/11:
 The CT & PET scan at UVA on October 4th did not detect any lymphoma activity! Nothing appeared that looked like active cancer in the scans. So Dr. Williams, my oncologist at UVA said that he thinks my chemo maintenance is keeping it in check. He was very satisfied and thought I looked great. I have been feeling pretty well most of the time, over the past 16 months or so, and exercising more, to try and build my strength back up. The scans and office visit were all in the new cancer center at UVA, which is near the main parking garage, so it was nice to not have to rush from the parking garage to Radiology to the West Offices and back to the parking garage. There is a new PET/CT machine in the new cancer center, and the final report indicated that it has twice the resolution of the other PET/CT machines. The resolution (slice size) on the new machine is 2 mm. or a little less than 1/10 of an inch, I believe. I had been concerned that my spleen, which has been getting larger over the last 2 or 3 months, was doing so because of lymphoma. That is how it started in 2008 and 2009. My blood counts have been stable for the past 16 months. Back in 2008-2009, my counts were all off the chart. So the plan is to continue on with the chemo maintenance every other month (the next treatment is scheduled for October 20th). No real concern expressed by UVA or my local oncologist about my spleen at this point, but the enlarged spleen is uncomfortable and makes me nervous. So I will be careful and hoping that something other than lymphoma triggered it being larger, and I hope it will get smaller again. It never did shrink back to normal size, but it was smaller back in 2010 and early 2011. I know infections can cause it to enlarge. My platelets are still low, but stable, and not low enough to require transfusions. The spleen can harbor platelets, and cause the platelet count in my circulating blood to be low.
   I have been following a few hundred other people around the world on a message board, who also have Mantle Cell Lymphoma in various stages (newly diagnosed, in treatment, in remission, etc). Over the past year, probably around 10 who were active on the message board have passed away, lost their battle with cancer. Many of those were due to infections. So even though in the fall of 2010, my doctors predicted I will relapse in one to three years, I am happy to have made it past the one-year point, and that the doctors seem encouraged that things are going well. My next UVA appointment is scheduled for April 2012. Just thinking that the doctors feel that I will still be around in April 2012 was encouraging, because in December 2009, I was not even sure I would make it through 2010. I have truly been blessed to be able to spend more time with my family and friends.
  The past couple of weeks has been stressful, my 95 year old dad tripped and fell on his carport and was bruised up and sore. Two days later he was amazingly much better. But then he slipped his riding lawn mower into a ditch and it threw him down in the ditch onto a concrete culvert, and he broke 7 ribs on his left side. He said the lawn mower did not hit him, thankfully.  Someone passing by saw him, unable to get up, and called the Rescue Squad. He was in the hospital for a few days, then moved to the Summit for rehab. Recovery is very slow and hard and painful. We are not sure when he will be well enough to leave the Summit. He has been very active up until this point, and very independent, and actually doing bush-hogging jobs on his tractor the week before all this happened. He is probably one of the toughest people I have ever known, for his age.
  Our daughter Jennifer (BHS '98) and her family moved to Mechanicsburg, PA a few weeks ago. Her husband, Fordys Arnold (Heritage High School '97) is a Gunny Sgt with the Marines in New Cumberland, PA, near Harrisburg, PA. They had been in the Richmond area for 4 years, only 2 hours from us. Now they are about 5 hours away, so no more "day-trips" to see the grand-kids. They will be there probably 2 years. Zack is now 8 and Ryan will be 5 in just a couple of weeks.
   I am still working full time, even though at AREVA Mt Athos Road, about 200 people have left for other jobs, retired, or are now unemployed. Some were people that I worked with at that location for over 40 years. Some had 20 or 30 years there. I still will likely be retiring from AREVA sometime in the next 6 to 8 months. If I am still healthy, I may still work, but not sure right now what it will be. I am still doing programming for AREVA, and enjoying it, but the Mt Athos Road AREVA main building is mostly empty and will never be the same. The other buildings there are very busy with reactor pump and motor refurbishment, and fuel field services.
   Thanks to everyone for your prayers and support and your emails. I received some recently from people who I have never even met, saying they were praying for me, and that really was nice. I know many of you do pray for me, and think of me, and I appreciate that. BHSBees.com continues on for now, and I am happy to still be able to do that for all the Bees and Bee fans! 

Update 9/23/11:
 My spleen is still getting a little larger each week, and has been uncomfortable the past couple of months. Also because it is larger, just like 2009, I have lost a few pounds because it is crowding my stomach. I am nervous about my upcoming CT and PET scan at UVA on Tuesday, October 4th. Other than that, I have felt about the same lately. As soon as I know anything from my UVA appointment, I will put an update on here and on Facebook too.

Update 8/25/11:
 Today I saw my local oncologist, at Pearson Cancer Center. My spleen has been getting larger slowly over the past few months. I also contacted UVA about this earlier in the week. My blood counts today were still stable, so I did receive the scheduled Rituxan maintenance infusion and had no problems with it. I have been working every day and feeling well overall, other than the fact that my larger spleen is a little uncomfortable. My spleen was extremely large when I was first diagnosed in 2009, fully of lymphoma. The February 2011 PET scan did not show any activity in my spleen, but there's a good chance that it is enlarged due to lymphoma cells, which would mean a relapse may be in process, even though my blood counts look OK. I will go back to see my local oncologist in 3 weeks. Then in early October, I will go to UVA for re-staging CT scan and PET scan. I don't know if they will do another bone marrow biopsy. The last one was July 2010. UVA predicted that I would relapse in one to three years. It has been one year since I was said to be in remission. It will be interesting to see if today's Rituxan slows down the spleen growth. And interesting if the PET scan at UVA shows activity (lymphoma) anywhere. I did have the dental work done a couple of weeks ago. I had my very first root canal, and 3 fillings, all within a single 90 minute visit. We moved our daughter, Jennifer (BHS '98) and her family to Mechanicsburg, PA. So we can't visit them and return home on the same day anymore. They will be there at least 2 years. Depending on what the CT and PET scan shows at UVA in early October, the next Rituxan infusion is scheduled for October 20th. I hope we will make it this fall to some of the BHS football games. We really enjoyed being able to attend several of them last fall. And one VT game too!  I want to go see Logan Thomas play at VT this fall, at least once. I have not checked on any tickets yet. It can be hard to find tickets!

Update 8/4/11:
 Today marks one year since I found that I was in remission. My UVA oncologist's Nurse Coordinator, Kim, removed my PICC line on 8/4/10, after 15 months of having it with no problems, and using it to get all kinds of chemo and to take blood samples. I am so thankful for this past year, for pretty good health. Thankful to God for leaving me here one more year to share life with my wife and family and friends. Thankful for the doctors who got me into remission and are trying to keep me there as long as possible. And thankful for all you who are my friends, taking a minute to read this and check on me!  The next Rituxan is scheduled for August 25th. Thank you all for your prayers through this life-changing event in our lives.
   Between now and the next treatment, I will be starting on some dental work that had to be put on hold the past couple of years. I am sure that is going to take several visits to the dentist. Not looking forward to this.
   BHSBees.com is starting on the 15th school year soon. I started this website in September 1996 for the class of 1997. This year's seniors are the class of 2012. Pretty amazing! Go Bees!

Update 6/24/11:
 The Rituxan chemo maintenance went fine today with no problems. The next infusion is scheduled for August 25th, and no blood check is scheduled next month. This will be the first time I have gone more than a month without a blood test in two years!  I did update my blood chart Excel spreadsheet at  www.bhsbees.com/larry.xls
Thank you all for your prayers.

Update 6/23/11:
 Friday 6/24 I will get another Rituxan chemo maintenance infusion. It usually takes 5 or more hours. News about Rituxan Maintenance for Mantle Cell Lymphoma came out this week, and the news indicated that my decision to do this was a good decision. The results of the study were so good, doctors are considering making it the standard treatment after remission!  This treatment will be my 19th dose of Rituxan since my first treatment in May 2009. Right now, it is scheduled through September 2012, but could be longer, if I continue to stay in remission and don't get any infections. The Rituxan does lower my resistance. But overall I feel pretty good, so I am really thankful. 
   Relay For Life went well earlier this month. Susan and I walked off and on until midnight, but then we came home. We had good support on the fundraising, and I appreciate all who donated. It is not too late to still donate, so if you would like to, go to my Relay For Life page at http://main.acsevents.org/goto/larrylewis 

Update 6/1/11:
 Last Friday's blood test results showed I am stable, everything pretty much the same as last month, so that is all good. This Friday night, Susan and I will be walking in Relay For Life at Heritage High School Track.  My brother's infection and fever got better and he was able to come home from the hospital late Saturday
  If you come to Relay For Life, be sure and say hi. I think we are going to be late arriving, probably around 6:45 PM, because Susan is working until 6:00 PM. Thanks for your continued prayers. 

Update 5/26/11:
 Tomorrow (Friday) I will have my monthly blood test. Hopefully no surprises. This has been a tough week for my family, especially my older brother, Eddie, and his family. He has been in the hospital all week with a fever and infection. He is very weak. Pray for his wife, Anne and their son, Bill, and daughter, Shannon. Anne has been his faithful caretaker for 10+ years while he has had Parkinson's Plus (with MSA). And last year, they lost their youngest son, Chris, in an accident.
   Next weekend, I plan to walk in the Relay For Life for the 2nd time. It is not too late to make a donation through my Relay For Life page:  http://main.acsevents.org/goto/larrylewis
    I am so thankful to all of you who have donated through my fundraising page for Relay For Life. Each gift, large or small, is special because I know it comes from the heart. I hope to be able to walk more than last year, if the weather cooperates.
On the Season Finale of American Idol, the song "Live Like You Were Dying" was sung. I had heard the song before, but now, after surviving cancer and chemo for 2 years since I was diagnosed, the words have much more meaning to me. I can tell already, I will walk the survivor lap again this year, with just as much emotion as last year. Life is a gift, but life is short. Live it and love those around you while you can.


Update 5/1/11:
All went just fine with the Rituxan and Decadron infusion Friday 4/29. I even had my Bee mom, Cynthia Hedrick, as my nurse for the 2nd time. She wrapped where I had my IV with some cool stretch tape with Bees on it!  She did great, just like all of the nurses at Pearson Cancer Center. As usual the Decadron wired me up and I did not get to sleep Saturday morning until 3 AM. Tonight it will be 2 AM, but by Monday I hope to be back on schedule. This happens every time so I am used to it. I felt great all day Saturday, and my blood counts were stable, red count and hemoglobin the best ever. However platelets did drop some, still not critical, I just wish they would come up some. Liver enzymes are a little better (elevated since spring of 2010 from Velcade). So I am happy to say that for now, all is well. Next CBC scheduled for May 27th, and next Rituxan infusion scheduled for June 24th. Blood chart in Excel at www.bhsbees.com/larry.xls   Today 5/1/11, marks a special date for me. It was 2 years ago today when I was diagnosed and sent to the ER for transfusions. My life changed on that day, forever. But amazingly, much good has come from all of this. A lot of things that might never have been said or done were said and done, and the gift of life and love has become more appreciated by many. Thank you everyone for your prayers and messages and your love.

Update 4/26/11:
April really went by quickly! But this has been a beautiful spring, lots of green and lots of blooms. So happy be still alive to enjoy spring!  Friday April 29th is my next scheduled Rituxan infusion at Pearson Cancer Center. It normally takes about 5 hours and goes pretty well. I am praying for no surprises in my blood counts, and improvements in my liver enzymes (still very high from Velcade in spring 2010, about 4 times the normal maximum value), and also praying for my platelet count to come up, they are still low, about half the normal lower limit, but not low enough to need a platelet transfusion. The neuropathy in my hands has gotten a little worse over the past month, I think because of spending too many hours on the keyboard at work. Starting in mid-May I am expecting to spend less time on the keyboard at work, as another section of our plant at AREVA Mt Athos Road will end production and shut down. More people will be leaving. The end of February, quite a few left as we ended 42 years of nuclear fuel manufacturing when AREVA moved the work to Washington state.

I am participating in the Relay For Life on June 3rd, 2011 at Heritage High School.  I participated last year as a survivor, even though I was not yet in remission. I had passed the one year mark since my diagnosis on May 1st, 2009.  It was very emotional last year to walk in the "Survivor's Lap". This weekend, on Sunday, May 1st, it will be 2 years since I was diagnosed, and I am happy to still be in remission. Thank you all for your prayers, emails, cards, and your support.

If anyone feels inclined to make a donation through me for the American Cancer Society's Relay For Life, visit my Fundraising page here:  http://main.acsevents.org/goto/larrylewis


Relay For Life - (This is from June, 2010)


Update 4/1/11: 
I saw my local oncologist today for monthly CBC blood work. Everything is about the same as last month. RBC, HGB, WBC all good. Platelets still low (81K), and slightly lower than last month (89K). Liver enzymes (AST, ALT) still high (4x normal max) from chemo (Velcade) in the first half of 2010. Overall, this is a good report, no surprises or big drops. There's some concern about why my liver enzymes are not recovering, it has been 9 months since I had any Velcade. So he is checking for hepatitis. I was checked for that last year and was OK. I am doing well, but the neuropathy in my hands and feet is also not going away. Sometimes my hands are freezing cold, and aching. This is also from the Velcade in the first half of 2010. The next Rituxan infusion is scheduled for 4/29/11 here in Lynchburg at Pearson Cancer Center. Thank you all for your prayers. Knowing so many were praying for me through all of this really has been a comfort, and I believe God does answer prayers, in His own way, in His time.  

Update 3/16/11: 
I'll have CBC blood count on April 1st and then another Rituxan & Decadron infusion on April 29th.

Update 3/4/11: 
The Rituxan & Decadron (steroid) infusion went smoothly today, no problems. Counts are back up to where they were month before last. All good, except platelets, but they did come back up to where they were in February (68K) to where they were in Nov-Dec-Jan (89K). I am so very thankful to continue feeling good, and to still be in remission. Thanks to everyone for your thoughts and prayers.
Note: I updated my blood count spreadsheet (Excel) - it is available here: www.bhsbees.com/larry.xls

Update 3/3/11: 

I will get my next Rituxan infusion here at Lynchburg's Pearson Cancer Center tomorrow (March 4th) and update this page sometime over this weekend. I am hoping that my CBC blood tests tomorrow will show an improvement over last month, at least back to the values I  had in November, December, January. I really need my platelets to get up into the normal range. My platelets have been below normal ever since I was first diagnosed 5/1/09. They were gradually getting better until last month, the platelet count took a drop.

At work, over the past two weeks, the AREVA nuclear fuel manufacturing facility at Mount Athos Road, where I have worked since 1969, made their last nuclear fuel. It is hard to watch as all of the automated equipment we worked so hard to develop over the past 42 years is disassembled. The place is very quiet. Many people have left. Fortunately quite a few have found other jobs within AREVA or B&W. Since 2004, we had fine-tuned the production line and it was the best in the industry. Our production line was the fastest, most modern and most efficient. I am still working, but expect to switch to part time later this year, and probably retire from AREVA sometime in early 2012. If I am still in remission and healthy, I will probably be looking for somewhere else to work for a while longer.

Update 2/3/11: 
The final CT and PET from 2/1 did not show any signs of uptake from lymphoma, so based on that, UVA is saying I am still in remission!  I kind of wish we could have done a bone marrow biopsy, which was the test used during the stronger chemo treatments to determine if I was in remission to begin with.  I will continue the current treatment plan, Rituxan Maintenance every-other-month, scheduled for 2 years (or possibly longer if I remain in remission). The next Rituxan infusion here at Lynchburg's Pearson Cancer Center is scheduled for March 4th. This week, more positive news came out from a Phase II Trial using Velcade saying that the Velcade treatments I received in the first half of 2010 provides 72% Complete Response for Mantle Cell Lymphoma and the two-year overall survival rate was 86%. So the choice to switch to Velcade was a good one last spring, and the PRIMA study indicates that the Rituxan Maintenance also was a good idea for me.

Update 2/1/11: 
We are back from my CT and PET scan, blood test and office visit with Dr. Williams at UVA.  He said the preliminary test results look good. I will continue the current treatment plan, Rituxan Maintenance every-other-month, scheduled for 2 years (or longer if I remain in remission). I also will continue monthly CBC blood tests.  Dr. Williams wants me to come back to UVA around August or September for another CT and PET scan. I should have final test results on today's scans in a few days. My platelets had dropped from 98K in December and January to only 64K., not sure why. It has been this low before, and came back up. My white counts are down a little too, but not real bad. Doctor Williams said that if I did relapse, there are several drug options available, Revlimid, CAL-101, and a couple of others, in addition to the Velcade I got during early 2010 to achieve remission.

The Rituxan Maintenance infusion every other month for two years that I am doing was based on a European study (PRIMA Study) with a different but similar form of Lymphoma. The PRIMA Study was on Follicular Lymphoma, mine is Mantle Cell Lymphoma. That study showed that 82% of people remained in remission while they were the Rituxan Maintenance every other month over the two year study. Only 18% relapsed, while 34% relapsed who did nothing after they were in remission from chemo treatments.

Last fall when we decided on the Rituxan Maintenance plan as opposed to a stem cell transplant, there were no test results available yet for using Rituxan Maintenance on Mantle Cell Lymphoma, however both types of Lymphoma normally have the CD20+ antigen, which is what is targeted by Rituxan.

Today my doctor said that the test results are now known on a similar study for Mantle Cell Lymphoma. The results have not yet been released to the public,  and will probably be announced in June. The results are basically the same, which is good news! It means we made the right decision last fall.  Thanks to everyone for your continued prayers and emails.

Update 1/20/11:
I have a CT and PET scan scheduled at UVA on February 1st. This will be the first "re-staging" since I was told I was in "clinical remission" on August 4th, 2010. Hopefully all will still be OK. I have been feeling well, other than the numbness (neuropathy) in my hands and feet has not really improved much. I do have low immunity, but I've thankfully avoided any colds or flu through all of my treatments and now into the 2nd winter, but I do have congestion in my throat that is a concern. Hopefully it will go away eventually and not get worse, although I have had it since before I was diagnosed on 5/1/09. Thanks for your continued prayers.

Update 1/7/11:
I had blood tests today, and then a Rituxan infusion at Lynchburg's Pearson Cancer Center. This includes a dose of Dexamethasone (steroid) by IV. The treatment is scheduled every other month to try and keep me in remission. Everything went very well, no problems. In fact, afterward I felt better than I had all week! Possibly the steroid has something to so with it. My blood counts were all good, except my platelets are still low, but at 98K, that is slightly better than last month, and the best since December 2009. The liver enzymes are still high from the Velcade chemo in the first half of 2010. I hope they will eventually come back down to normal. I had a great new nurse today, who happens to also be a Bee mom!  So when she wrapped my hand after removing the IV butterfly, she appropriately wrapped it with the sticky cloth that had Bees on it!
  I have a CT and PET scan and office visit scheduled at UVA on February 1st. Not sure if there will be any other tests, such as a bone marrow biopsy. It is a more sensitive test to look for the MCL than the CBC blood tests. But it is a little painful, but the painful part doesn't last too long.
  This evening we had a visit from a former co-worker and friend Dick Penoza, and his wife, Jacqueline. Dick managed our Fuel Field Services group when it first started up, and I was "on loan" for a few years working to develop the software for our remote spent fuel ultrasonic inspection system (ECHO-330). We had a great visit, and I am happy that we've been able to stay in touch. They had a daughter and son who went to Brookville, Keith and Christie are their names. I am so thankful for the many friendships and family we have. This week I attended a farewell for another AREVA co-worker I've worked with for many years on many different product lines at B&W/AREVA. Jeff Austin worked his last day today for AREVA and is going to work for B&W. Quite a few co-workers have left to work at B&W and with AREVA moving our production line to Washington state, I am happy for each one that finds a job. The Mt Athos Road plant has been like a big, close family. Our last production is around mid-February. It will be a different place after that. I've been there since March 1969.
  Thanks for your continued encouragement by email, Facebook, phone calls, and your prayers. 

Update 1/4/11:
On Friday 1/7/11, I am scheduled to get the next Rituxan infusion at Lynchburg's Pearson Cancer Center. Then later this month, go back to UVA for "re-staging", which will probably be CT, PET scan, and maybe bone marrow biopsy. I will update this page over the weekend after the Rituxan on Friday. We had a nice Christmas and New Years, and I've been doing very well over the past month or so since the last update.

Update 12/12/10:
Monthly blood tests were done on Friday December 10th. All of my CBC counts were good, except platelets. They have been low ever since I started chemo back in May 2009 and were probably low for the 12+ months before I was diagnosed, too. This year my platelets have been between 60K and 90K (normal is 140K-440K). October the count was down to 63K (below 20K requires a platelet transfusion, which I have not needed in over a year). November it was up to 78K and this time, it was up to 97K, which is the highest it has been all year!  So that was good news, still moving in the right direction. The next Rituxan treatment is scheduled for January 7th. Then later in January (date not set) I'll be going to UVA for "re-staging", probably CT and PET scans, possibly a 5th bone marrow biopsy. Work is still keeping me plenty busy with a variety of projects, and thankfully I am able to be there at work. I will have been there 42 years in March, 2011, it has been a great place to work. I am looking forward to being off a week for the Christmas holidays. I am so thankful to be in pretty decent health right now. This past year, so many of our friends and family have had a very tough year, some with serious health problems, even cancer, many with financial problems, some co-workers out of a job, and more next year, and some have lost family members and friends due to health or accidents. Several are going through chemo and radiation treatments for cancer now, or did earlier this year. Some are not doing so well and some have won the battle, for now. We all are remembering my nephew, Chris, who lost his life this year in April, at age 32, leaving behind his wife Amber and their 3 kids. This was very hard on Chris and his family. Especially on my brother and his wife, and Chris' brother, and sister, and all our family. And then my friend Randy Bosiger lost his son, Lucas, in an accident this year. Life can change so fast for any of us. I can remember last year being in the hospital at UVA between Thanksgiving and Christmas. It was surreal, that's the best way I can describe it. These past 18 months have changed my perspective of life, and made us all much more aware of what's important in this short life. For me, it is our family and our friends and our salvation and trust in God. We already knew that. But having a diagnosis of cancer, or seeing a young life ended abruptly, either can bring to your center of attention how short life is, and what's important. Sooner or later we will all face these kinds of things. Most of us don't think about it until it happens to us, ourselves. This Christmas, be sure and express your love for your family and friends, while you still can.
We hope you all have a wonderful Christmas, and may God bless you and your families.

              LarryAndSusan@bhsbees.com     www.facebook.com/larryandsusan
 

Update 12/5/10:
Monthly blood tests are scheduled for Friday, December 10th. At that time, I also expect to schedule the next Rituxan treatment for the first week of January. Right after that treatment, I will be scheduling a visit to UVA probably for CT & PET scan, possibly another bone marrow biopsy. I've been working every day at work. The only problem has been the continued numbness in my hands and feet. The colder weather makes it worse, especially in my hands. It has been great this year to be healthy enough to attend several of the Brookville Varsity Football games plus one VT Hokie game, and to be strong enough to go in to work pretty much every day that I did not have an appointment for a chemo treatment or tests. I did miss a week back in the spring for hernia surgery, and a few other days here and there. This time last year, I had just returned from UVA and my 3rd week-long chemo treatment. I was very weak, and was preparing for a 2nd bone marrow biopsy at UVA, and also a stem cell consultation at VCU/MCV Richmond just before Christmas. What a difference a year makes. Thanks so much for all your prayers. We were really happy that we got to see so many of the BHS games this year, it was a great (12-2) season!
 
Update 11/4/10:
Blood tests today showed platelets moving back up to near where they have been all year. Still low at 78, but better than last month. All other counts were back to where they had been in August & September, so that was a relief. I feel better than I did back on 10/14 when those blood counts were low. So this was good news, counts did not continue to drop, they came back up. White counts came back up from 3.0 to 3.6, close to the normal range. Neutrophils, red count, hemoglobin, hematocrit all great. (chart at www.bhsbees.com/larry.xls ).  BHS vs JF Friday night for the last regular season game. Its been a great season, and we have enjoyed going to several of the games this year. Looking forward to the Hokies tonight too, on ESPN. Thanks for your continued prayers for me and my family. Next blood test is December 10th, and next Rituxan treatment around the first week of January. Then back to UVA for CT & PET scan ("re-staging").

Update 10/14/10:
Everything went well today with the Rituxan & Decadron infusion. It was on on schedule, and there were no reactions. I slept through about 2 hours of the 4-1/2 hours I was there. My platelets have dropped to the lowest value in months, from 86K to 63K (normal 140K-440K). Below 20K is critical, so this is not critical, and hopefully it will not keep going down. It has been this low before and came back up.  It is most likely due to all the heavy-duty chemo I had last year and earlier this year.  My white counts are down slightly below normal too (down from 4.7K to  3.0K, normal is 4K-10K). They have been bouncing between 2.9 and 4.7 this year. Neutrophils are good, so my immunity is still good. Enzymes are still through the roof from Velcade earlier this year, but gradually coming down, just very, very slowly. Thanks for your thoughts and prayers. I plan to work Friday as usual. My next scheduled visit is for CBC blood tests on November 4th. I am looking forward to the BHS vs Amherst football game Friday night.

Update 10/9/10:
I am scheduled to get the next Rituxan treatment Thursday October 14th at 9:00 AM.  I will also have CBC blood tests that day. In September, the CBC blood tests showed pretty much everything was normal except my platelets are still low, but not critically low.  I am still doing well, working every day. And I have made it to 3 Brookville football games, and one VT game.  I really am glad I was able to go to the See You At The Pole event at Brookville this year and personally thank the Bible Club for their prayers for me over the past 17 months.  I do still have numbness in my hands and feet (from the 16 doses of Velcade this year from January to June). The cooler weather is making it worse, almost painful at times.  The doctor told me that it may never go away. But that is a small price to pay, and most of the time I am able to "tune it out" and ignore it (so far).  The coldness and numbness in my hands sometimes makes it hard to get to sleep without using Ambien. But I am not complaining! 
I thank God for the miracle and for my remission, and cherish and enjoy each and every day that I am feeling well (better than I have since about 2006). Thanks for your continued prayers for me!

Update 9/21/10:
I had scheduled CBC blood tests today (Excel spreadsheet here) and an office visit with Dr. Halpin here at the Pearson Cancer Center. All my values good, except platelets are still low (86K), but they have been improving slowly over the past 3 months since the last Velcade chemo in early June. Platelets have not been over 100K since January (normal is 140K-440K). But the value is not critical and I can't feel any problems because of low platelets, I just have be careful to not get cut seriously or have an internal injury. The platelet value would have to get below 20K to require a platelet transfusion. I have not had a platelet transfusion since October 2009, thankfully. Platelets were only around 70K in March when I had a hernia repair surgery with no problem. the neuropathy in my hands and feet from Velcade is still there. The doctor said it may may take a long, long time to go away, or it may never go away. My lymph nodes and spleen seem to be all normal, no swelling anywhere. The doctor said I looked very well.  I have the next Rituxan infusion scheduled for October 14th. It takes about 5 hours.
  Susan and I were at the BHS football game last Friday night, September 17th vs. Hidden Valley. It was great to see Bunker Hill, and a lot of others faculty members, and Bee fans and friends. The next morning, Saturday September 18th, I went to the VT vs ECU game at Blacksburg with my daughter (Jennifer, BHS '98) and her husband, Fordys, and their 7 year old son Zack. We had a great time, great weather, and the Hokies won too!
   Last year at this time, I could barely walk to my mailbox and back (about 100 feet).  I remember the "Larry Lewis Nite" at BHS last year, September 25th, 2009. It will always bring back a lot of emotions of gratitude and hope and happiness.  I remember parking near the ticket gate near the tennis courts, because I was weak, and this way I did not have to walk so far. It is awesome to see how much better I am this year, and I pray that I can stay in remission and in good shape for a long time.
   Tomorrow morning, 9/22/10, I plan to go to BHS at 7:00 AM to the See You At The Pole event, with the Bible Club. I know the BHS Beelievers Bible Club prayed a lot for me last year when things were not looking so good for me. I am grateful to all those students who prayed for me, I want to be there with them and make sure they know that their prayers were answered! Thank you all for your support and prayers.

Update 9/3/10: I am doing well, working every day. It is great to no longer have the IV PICC line, and not be going for chemo or blood tests every week or two. My next visit to the doctor is scheduled for 9/21 just for CBC blood test. Then sometime in mid-October for a Rituxan infusion, scheduled every other month. I think I will be going back to UVA in possibly January to check and see how I am doing. Not sure yet about that date. I am hoping we will make it to several football games this fall at BHS, especially the one honoring Bunker Hill and also Homecoming. Bunker Hill taught me and all 3 of my brothers Phys Ed. I had him in the OLD Brookville High School. Then, our daughter had him for Driver's Ed., she was class of '98. He has been there for about 3 generations of Bees. This weekend, we will be celebrating with family for my 60th birthday, and our 38th anniversary. Last year at this time, I was not sure I would still be around for this birthday. I am thankful for all the prayers and the doctors and nurses who got me to where I am now, better shape than I have been in 2 or 3 years. Now praying it will last a long time. Not just a few months and not just a few years. 

Update 8/19/10:
Today I had an infusion of Rituxan as scheduled, at the Pearson Cancer Center. It took about 5 hours total, and included Decadron, a steroid. There were no complications today, so that was good, not sick, not tired, no reactions. I have received this drug about once a month for the past 14 months along with the other chemo drugs I've been getting, so it is not new to me. During my August 4th visit to UVA, the doctor there had said I would get Rituxan once every other month for the next six months. But today, Pearson Cancer Center said it was set up in their system for once a week for the next 4 weeks, then none for six months. So Monday I will get the two doctors to talk and figure out which schedule I will be on. Blood counts are not much different than a couple of weeks ago. Platelets still low, but not critical. Liver enzymes still high from 16 doses of chemo (Velcade) this year. Now that I don't have my IV PICC line in my arm, I had to get stuck today with butterfly IV needle, but it went OK, the nurse got it right on the first try.
  Our family, including my daughter, son-in-law, and two grandsons were able at the last minute to be able to spend a week at Myrtle Beach during the week of August 8-14. We have gone there almost every year. We had great weather, fun times and a safe trip. It was nice to be able to make the trip, just after having my IV PICC line removed. A celebration of near-complete remission!
  The last day you can make a donation through Relay For Life is August 31st. So you can still give. If you feel inclined to give to the American Cancer Society, here's a link to my donation page: Larry's Relay For Life Page  (Let me know if you donate!)
 
As always, thank you all for your continued prayers, calls and emails.
Larry   www.facebook.com/larryandsusan   LarryAndSusan@bhsbees.com

Update 8/5/10:
I went to UVA on Wednesday 8/4/10 to see my doctor, Dr. Michael Williams. He said that the July bone marrow biopsy showed no lymphoma cells! There was a small population of B-Cell clones, which indicates that somewhere, there's a small amount of lymphoma still around, but there was none in the sample. Blood cancers are near impossible to put into complete and permanent remission using chemo. A stem cell transplant can do it because your system learns how to actually attack and kill the cells on its own. However, the risk of complications (including a 20% chance of dying) from a transplant is not so good, and often, the quality of life afterward is not so good either. And there's only about a 50% chance that a transplant will kill the cancer. The risks and complications are worse for patients older than 60 and for patients who have received a lot of chemotherapy already. I will be 60 in a few weeks, so I have both of those things working against me.

So I am as close to complete remission as I can get using chemo, and I am feeling pretty well, working every day. All my blood counts are normal except my platelets are still low and liver enzymes high (both problems are from the 16 treatments of chemo this year, Velcade), but the doctor feels that they will improve now that I am off of the heavy duty chemo. So, I will not be getting any more of the destructive, strong chemo treatments for now. The nurse coordinator at UVA removed my IV PICC line Wednesday!  I have had it in for 10 months with no problems. Sure has been nice to not get stuck for blood tests, chemo infusions and injections for PET scans.

In mid-August, I will start immunotherapy maintenance (Rituxan) every other month here in Lynchburg at the Pearson Cancer Center, where I have received all of the Velcade chemo during 2010. I have had Rituxan 13 times over the past 14 months, it is not so hard on me. It takes about 5 hours to get it by IV. To read read more about how Rituxan works, click here.  I will go back to UVA in January for a follow-up CT scan, and possibly other tests. This is definitely an answer to our prayers!

The doctor also said that I would definitely eventually relapse, but he thinks it could be 1 to 3 years or more. A study using this method of immunotherapy maintenance shows a high percentage of people remain in remission for 2 years or more. The study data for this method only goes out for 2 years, because it is a fairly new way to treat Mantle Cell Lymphoma. When relapse occurs, he believes I could go back to some of the same chemo I have been getting (or one of the others I have not yet gotten) and it might work to put me back into this state of near-complete remission that I am in now. I believe the key is to catch it early, so we will be checking for it every 3 or 4 months.

Thank you everyone for your prayers, it has been a long 14 months since I started down this path back on May 1st, 2009.

I will still try and get the Caringbridge.org web page up to date, and when I do, I will let everyone know how to get to it.
As always, thank you all for your continued prayers, calls and emails.
Larry   www.facebook.com/larryandsusan   LarryAndSusan@bhsbees.com


Update 7/29/10:
I finally got the bone marrow biopsy reports from the biopsy done on 7/20/10. Unfortunately, they did not say I was in remission. The value that was 87% in September, 14% in December, 4% in February, is now showing 10%. However, there's a lot more to interpreting the report than that one value. The nurse coordinator did not seem to be concerned about the report, but she's not allowed to interpret it. I have an appointment Wednesday 8/4 at UVA and most likely will have my IV PICC line removed, and I will discuss the report with my doctor, and find out what the plans are. I am sure my body needs a break from the Velcade. Some words in the report lead me to believe that my bone marrow output of platelets and red cells might be low. Could be caused by damage from the chemo or from the lymphoma or both. If it is from the chemo, maybe it will recover. My liver enzymes are way up from the Velcade. They have started to come down a little already. This is somewhat of a turning point. I have not had any chemo in 7 weeks now, and they are saying I most likely will not get any for a while. I will update again after the doctor visit next Wednesday.  You can check out my blood charts at www.bhsbees.com/larry.xls if interested. Thank you all for your continued prayers, calls and emails.
Larry   www.facebook.com/larryandsusan   LarryAndSusan@bhsbees.com

Update 7/25/10:
No results yet from the bone marrow biopsy done on 7/20/10 at UVA. I am expecting to get the results this coming week. The doctors indicated that I probably won't get any more chemo for a while. So I may be getting my IV PICC line out soon. The UVA nurse and I discussed two possible reasons why my platelets could be low (while pretty much all other CBC values are near normal). One reason could be that my spleen is still a little larger than normal, and that can cause the amount of platelets circulating in my blood to be low, because the spleen can collect and hold platelets. Another reason could be that for the past 10 months, each night, we have to flush my IV PICC line with saline and then fill the IV PICC lines (2) with heparin. When we flush it the next night, the heparin goes into my blood stream. Chronic exposure to the heparin can make me have low platelets. Hopefully it is one of those two things, because another reason could be permanent damage to my bone marrow from either the disease or from chemo or both. The pathology report from the February bone marrow biopsy seemed to indicated that the cell production in my bone marrow was basically normal, so I hope that is true.

Update 7/19/10:
The biopsy on 7/9/10 of the hernia repair area came back OK, no lymphoma cells, only scar tissue. So that was a relief. Evidently the article about false-positives in PET scans from hernia mesh repairs is real.
  Tuesday 7/20/10 (tomorrow), I will go back to UVA for the 4th bone marrow biopsy that was originally scheduled for 6/30/10. So it will be 3 weeks later than it was originally scheduled (because of the delay of getting that biopsy of the hernia area and getting that diagnosis). It has been 6 weeks now since I had any chemo treatments, the longest break I have had all year. The last blood count showed that my platelets are still low, but not critically low. Most all other counts are normal, or very close to normal, and all counts have been fairly stable for several months, unlike last year, when they were way out in left field and all over the place. I am hoping and praying for this bone marrow biopsy to come back with no sign of lymphoma, although I doubt it will be that way. I had been wanting to do two more cycles (8 treatments) of chemo after reaching complete remission (if I can get there). I was close to zero % lymphoma in my bone marrow in February (I was at 4%). But the doctor at UVA has mentioned possibly taking a break from chemo, but he didn't say for how long, or that I would for sure get a break. He may want me to take a break because I've already had so much chemo, to try and avoid a permanent damage to my bone marrow's ability to recover. I'd like to make sure the lymphoma is completely gone, if possible. The bone marrow biopsy does have a limit on the sensitivity, so I know even if it shows zero % there is likely to be a small, undetectable number of cells still in my blood system and/or bone marrow, which can multiply over time come back later. I still don't have my CaringBridge website done yet, I've been busy working every day, feeling fairly good, thankfully. But I still do plan to get it up to date and let everyone know about it when I do. Thanks as always for your continued prayers, emails, calls.
  Larry   www.facebook.com/larryandsusan   LarryAndSusan@bhsbees.com

Update 7/9/10:
The biopsy of the hernia mesh repair area was done at UVA today, with no problems or complications. The doctors at UVA working on me today said they were aware that hernia repair mesh was able to cause a false-positive in PET scans, but they had never seen it before. I gave them a document from the American Journal of Roentgenology (Radiology), explaining that this was not an uncommon occurrence, and explaining what it might be. They took 6 samples and the preliminary observations today were that there were probably no lymphocytes in those samples, which means probably no lymphoma. I hope the final results agree. Hopefully now I will get the 4th bone marrow biopsy next week, and find out where I stand after the 9th-16th chemo (Velcade) treatments over the past few months since February. 

Update 7/2/10: The bone marrow biopsy Wednesday was not done. I did have the CT and PET scan. Blood counts done, and updated online at www.bhsbees.com/larry.xls  - In the area where I had a plug and mesh patch inserted for a hernia repair in March of this year, the PET scan showed some indication there. I've read online from reputable sources that this is not uncommon, and probably not a sign of any cancer in that area. It is normally a false-positive. I was not told of any other areas on the PET scan that showed up, and 3 previous PET scans were clear. UVA said I will probably have to come back next week. They either will do a biopsy in that area or I will have the bone marrow biopsy, maybe both. I may also get the PICC line (IV in my upper left arm) removed that day. I have had it since last September, and it has really worked well for chemo and blood tests. No problems even now with it. It is possible that I won't get any chemo for a while. I really would like to get the bone marrow biopsy to know where I stand in relation to the previous bone marrow biopsies. I have had 8 chemo treatments since the last test in late February. I would like to know if they helped!  The blood counts all basically dropped a little bit. And it has been 3 weeks since I had any chemo. So my body probably has taken a beating from the chemo and needs a break to try and catch up. I hope it can!
I still have not completed updating and setting up the Caringbridge blog, but hope to get it soon. I have been working basically every day lately, at my office. It is nice to feel up to going in to work this year.
  Thanks for your votes for my nephew's wife in June. Now, we need to do it one more time. Vote every day in July for Amber L. in Kannapolis, NC.  Be sure and vote EVERY DAY in July!  This is my late nephew's wife. My nephew, Chris Lewis, lost his life in an accident Easter Monday, leaving Amber and their 3 kids with no insurance. If we can vote every day in July and have Amber in 1st place at the end of July, they will have their mortgage paid for a year! It would be a really easy thing for us to do for them, all you have to do is click beside her name to vote every day in July. 
Go to this page, sort the list by VOTE, and find Amber L. in Kannapolis, NC.  Click here to vote.
Click here for Chris' Obituary. Thank you for voting, and thanks for your prayers for me!


Update 6/29/10:
Tomorrow (6/30) is the day for my 4th bone marrow biopsy, CT scan and PET scan at UVA. I will be a long day. I am more nervous about this one than the past 3, when I knew I was much worse off than I am now. Not sure why. Anyway, thanks for your prayers and messages and cards. I will put something on here when the results are back, about a week from now I am guessing. I've been feeling well and working every day at work since my last chemo treatment on June 7th. Thanks also to all who have voted for my nephew's wife, Amber L, in Kannapolis (information on the main BHSBees.com home page). We need lots of votes on June 30th, tomorrow. If we keep her in the top 5, she will win car payments for about one year. They really need this, after losing my nephew in an accident on April 5th this year. In July, in order to win, she will have to be FIRST PLACE. It will be hard to keep her there, but with enough different people voting, you could help make it happen. We need votes EVERY DAY.  The link to vote is below. Click VOTES and click SORT and find Amber L in Kannapolis, NC. You can vote only once per day, but it is important to vote EVERY day, between now and August 1st. Thank you!
Vote here:  http://www.mypigeonforge.com/savingvacations/Story/Page1  

Update 6/10/10: You can give to the American Cancer Society through my Relay For Life page until August 31st.
So if you feel inclined to give to the American Cancer Society, here's a link to my donation page: Larry's Relay For Life Page

Update 6/7/10:
I successfully got my 24th chemo treatment today (Velcade & Decadron). Blood counts are still stable. All pretty good except platelets are still low. They have been low all year, not critical though. Next appointment is at UVA on 6/30 for bone marrow biopsy, CT and PET scan for "re-staging". I am still praying for a miracle, for complete remission. Even with complete remission, I am sure there will be "maintenance" chemo over the next few months.  I am feeling pretty well, even after the 8 laps (2 miles) in the Relay for Life event this past Friday night. I think I could have done more, a thunderstorm ran me away. My son-in-law did 24 laps (a lot of it running). My wife and daughter came back at midnight and did quite a few laps up until 2 AM. I was sore Saturday and Sunday but feel good now. It was very nice to be there and walk in the initial "Survivor Lap", and share the event with my wife, daughter, son-in-law, grandsons, and also some other friends who have had cancer, and/or had family members or spouses that had cancer. Some who also had lost their spouse or parents or family or friends to cancer. I hope to be strong enough to participate again next year. Thanks to those who contributed!  Although it has not all shown up on my donation page, I raised more than $650 so far, much more than I expected to raise. (I will shoot for $1,000 next year!)  So no treatments or doctor visits or anything are scheduled until 6/30/10. I am planning to work every day between now and then. Thankful to be able to work!  Thanks for your support with calls, emails, cards, and prayers. Maybe soon I can get the CaringBridge.org page going, so any who would like to, can subscribe to email updates there, when I get it updated and done. I will put a note here when the page is  done.

June 4th, 2010 @ Relay For Life

Update 6/1/10: I successfully got my 23rd chemo treatment today (Velcade & Decadron). Blood counts seem to be stable, most in the good range, white counts slightly low, platelets still a little low but a little better than last week. I updated my Excel blood charts online ( www.bhsbees.com/larry.xls ). Didn't get any chemistry blood tests today. Maybe next week. My next treatment is on Monday 6/7/10. That will be the last one before going to UVA on 6/30/10 for "re-staging" (bone marrow biopsy, CT and PET scan). That will be a long day, I have to be there to start the PET scan at 9:00 AM, and the bone marrow biopsy is scheduled for 12 noon. Then a doctor's appointment at 1:30 PM.

I appreciate all who donated to my Relay For Life page. It is not too late to donate! Relay for Life is this coming Friday night (June 4th) at Heritage High School.  I appreciate those who have given already to this American Cancer Society fundraiser, and do not expect anyone to give if things are tight, I totally understand.
You can give here:  Larry's Relay For Life Page
    I will be walking in the initial "Survivor's Lap", which will be a very memorable event for Susan and I, and our daughter, Jennifer (BHS '98) and her husband, Fordys Arnold (Heritage High School '97). Thanks for continued support, emails and prayers! 

Update 5/25/10: No problem getting my 22nd chemo treatment today (Velcade & Decadron). Most blood counts moved a little toward the middle of the normal range. All but white counts and platelets are in the normal range. White counts were better and almost in the normal range, platelets dropped a little, probably a delayed response to the last 5 Velcade treatments. I also updated my Excel blood charts online, and included some values for liver enzymes and other chemistry, which is not checked on every visit. The Velcade has raised my liver enzymes, but the doctors say they should return to normal when the Velcade is stopped. (Excel blood charts are at www.bhsbees.com/larry.xls ). Two more to go before going back to UVA for "re-staging" (bone marrow biopsy, CT and PET scan) around the end of June. Thanks for continued support, emails and prayers! 
Update 5/23/10: I will be walking in the Relay For Life on June 4th-5th, at Heritage High School. My wife, my daughter and my son-in-law are also walking in this fund raiser for the American Cancer Society. I am going to walk in the initial "survivor" lap. I have never thought of myself as a survivor, since I am not in remission yet, but they define a survivor as anyone who has been told they have cancer. I am hoping and praying that I will be in remission in late June.
  Just in the past 12 months since I was diagnosed with Mantle Cell Lymphoma, several very good friends of ours have passed away from cancer. Others, like myself, are still fighting the fight. It is a tough disease, physically and emotionally. Not everyone has good insurance coverage or money to cover co-pays and prescriptions. Not everyone has the support network of family and friends and church. I've been fortunate to this point to have all of those, and a dedicated, loving wife by my side through all this. The 50% survival rate for my type of cancer is 5 years. I am trying to do what I can to make the best of what's left of my life, to help all those I can, and whatever way I am able. We've donated to the Relay For Life through our daughter, Jennifer Arnold and her husband, Gunny Sgt. Fordys Arnold, USMC, who are participating.
 
I will be taking part in this event for the first time, and as a survivor, as I have been battling this disease for over a year now. Also I will walk in honor of our son-in-law's mother, Flo Arnold, a breast cancer survivor, and in memory of two friends, Larry Wright and Sherry Lindstrom.
Relay For Life pages:  Jennifer's Page - Fordys' Page - Larry's Page  - Susan's Page
Update 5/18/10: I successfully received my 21st chemo treatment today, Rituxan, Velcade, Decadron. The Pearson Cancer Center was very busy and it was two hours after I arrived before I started receiving the infusion. The Rituxan takes several hours, so we did not get away until around 4:30 PM. Everything went will, no adverse reactions. White counts and neutrophils were down slightly, but not enough to prevent me from getting the treatment. Platelets still on the low side, but not dangerously low. Red counts and hemoglobin still up in the normal ranges. I will update my blood charts online Wednesday night 5/19 at www.bhsbees.com/larry.xls  
I really appreciate my wife, Susan, spending her birthday with me at the treatment today.
Update 4/29/10: I received the 20th chemo treatment on 4/26/10. It was the 12th treatment using Velcade. My counts continue to look fairly good overall, and I am working most days at the office, and one day a week from home. The schedule is 4 more treatments of Velcade a week apart each, starting 5/18/10. The first one will include Rituxan. Then, around the 3rd or 4th week in June, go back to UVA for a 4th bone marrow biopsy and CT/PET scan.

Another of my co-workers, J. Todd Lee, who is also my manager, is representing me in a cancer fund raiser this summer. Two other co-workers are joining Todd (Tim Miles and Chris Schechter) on "Team Dirtshack". This is the official Lance Armstrong Foundation 24 hour biking event. The fundraiser will provide funds to fight cancer through the Lance Armstrong Foundation.
Update 4/21/10: I had an appointment yesterday, and all my counts have improved since last week, which was a relief. Especially good to see my white counts finally come up into the normal range. So the improved counts allowed me to get the scheduled chemo treatment yesterday. It was a short infusion, about an hour, since it did not include Rituxan, only Velcade, Decadron and Aloxi. The hepatitis tests all came back negative, so that was good too. Not sure how many more treatments before the next bone marrow biopsy. It could be about 5 more treatments , over the next 6 weeks.
Update 4/12/10: I was unable to get my chemo on 3/31/10 due to low blood counts (white counts, neutrophils, platelets).  The next scheduled attempt was today. The neutrophils and white counts and platelets were all up just slightly, but enough to be able to get Rituxan and Velcade. The doctor is running tests to see if I have hepatitis, because my liver enzyme values are up. They were about 4x the normal maximum two weeks ago. Hepatitis can show up a long time after a transfusion. I have not had a transfusion since last October, 2009. But it also could be from the Velcade chemo, it can cause this, and it coincided with starting on Velcade in January. After a two week break from Velcade, the values have dropped back to only 2x the normal value, so that's a good sign.  I've updated my blood charts at www.bhsbees.com/larry.xls and will probably be adding more charts to watch the liver enzymes. The hernia repair surgery 4 weeks ago is pretty much all healed up and doing fine. Thanks for your prayers. This has been a tough week for the Lewis family. On Monday, 4/5/10. my 32 year old nephew, Chris Lewis (youngest son of my brother, Eddie and his wife Anne), was killed instantly in an auto accident in Kannapolis, NC, when another driver fell asleep and crossed the line, hitting him nearly head-on, but on his side of the vehicle. Chris left behind a wife and 3 young children. It has been very hard on all of us in the family to cope with this tragic loss. Chris' obituary.

Update 3/23/10: I will start back on on chemotherapy Wednesday, 3/24/10, with Velcade and Rituxan. I am recovering slowly but normally from the hernia surgery on March 9th, which was scheduled between chemo treatments. I will probably get Velcade for 4 to 6 weeks and then go back to UVA for a 4th bone marrow biopsy to see if it is continuing to help move me closer to complete remission. If I reach complete remission, the plan is to do a couple of more cycles of chemo to make sure, and then possibly some "maintenance" chemotherapy every few weeks or months, to try and remain in remission. I am still undecided about a stem cell transplant. The medical industry does not have a consensus on whether chemo plus a transplant provides better quality of life, or even a longer life, than chemo alone. Results of transplants vary quite a bit from person to person. And of those who  survive the transplant (80%), for many of those, the quality of life is mixed with new health problems complications as a result of the transplant process. Thanks to my co-worker, Casey Venters, who raised over $2600 for the Leukemia & Lymphoma Society, and trained for months in order to run a marathon race in VA Beach in my honor, on March 21st, 2010.
- Story about Casey's marathon run for Larry from the News & Advance

- Thank you message from Casey, and a list of the donors

Update 3/9/10: My hernia surgery went fine. They gave me Versed, which prevents you from remembering anything about the surgery. Worked great, I don't recall going into or coming out of the operating room. Pain is about what I expected, and being kept in-check with pain medicine. I went in at 7:45 AM, they operated around 9:30 AM, about 15 minutes ahead of schedule, I woke up in recovery, went to my room, and we were out by around 2:15 or 2:30 PM, home by 3:00 PM. Hopefully the recover from the surgery will be quick and un-eventful. Then I can get back on the chemotherapy and continue to try and get into complete remission from the Mantle Cell Lymphoma. Thanks for your calls, cards, emails and prayers! 
Update 3/3/10: I am having a hernia repair on Tuesday, March 9th. Then a couple of weeks later, after I recover, the plan is to start back with the Velcade & Rituxan to try and reach Complete Remission.

Update 2/28/10: The results of the bone marrow biopsy showed I am continuing to move in the right direction, toward remission. The biopsy showed a drop from 14% in December to 4% now. That was really good news, indicating that the Velcade & Rituxan I got over the last 2 months is working. The doctor at UVA said I would probably continue on this treatment, but first, I have to get my white counts and platelet counts up, and also have surgery for a hernia. Then I will continue with the Velcade & Rituxan. Thanks to everyone for your continued cards, emails and prayers, the prayers are working! Pray for an uneventful hernia surgery with a quick recovery.

Update 2/24/10: Today at UVA, I had a 3rd bone marrow biopsy and also, I had a 2nd CT & PET scan. I will have the results of these in a few days and update this. I am hoping and praying for a result of 'complete remission'. In December, I still had 14% lymphoma cells in my bone marrow, but that was down from 87% last September! The results of today's tests will dictate what the next steps will be, more chemo, or a stem cell transplant, or 'watch and wait'.  I've been feeling pretty decent, but my white counts and neutrophils and platelets are still low from the chemo in January and February. Hopefully they will come back up into the normal range soon. You can check out an Excel spreadsheet of my blood counts starting last May at www.bhsbees.com/larry.xls 

Update 2/14/10: Friday the 12th, I got the 8th and last planned dose of the chemo treatment Velcade. It has made my feet and hands numb. The effects have been accumulative and gotten worse after each treatment. I am hoping it will get better now that I've stopped getting Velcade. I will have a 3rd bone marrow biopsy and 2nd PET scan scan at UVA the week of February 22nd to see if the Velcade has gotten me closer to remission. Overall, other than the numbness, I am feeling better than I have in probably 18 months. But I still have a long way to go, and the doctors are recommending the allo-stem cell transplant to try and get me into permanent remission. I've been able to go in to work 2 or 3 days each week for the past few weeks, but still get tired after about 5 or 6 hours. Other days I have been able to work remotely from home. Hopefully my white count, neutrophils and platelets will start coming back up soon, now that I am not getting chemo for the time being. My hair has started to grow back too, since Velcade does not make it fall out. I will probably keep it short, my wife says she likes it short. You can check out an Excel spreadsheet of my blood counts starting last May at www.bhsbees.com/larry.xls 

One of my co-workers (Casey Venters) is running in a marathon in my honor March 21st to raise money for the Leukemia & Lymphoma Society.  Casey still needs more money to reach his goal. You can visit his web page to read about him, or to make a contribution at: http://pages.teamintraining.org/va/shamrock10/cventers

Thanks to everyone for your continued cards, emails and prayers.

Update 2/5/10: Today I got the 6th of 8 planned doses of the chemo treatment Velcade (described below). Glad we had an early appointment, and that it was here in Lynchburg, and not at UVA. There was 4 inches of new snow by the time we got home! There were no problems today, blood counts are trending down, but that is expected. I've felt pretty well the last few weeks, and I was able to go in and work at my office 2 days this week and 2 days last week and 3 days the week before. The last 2 doses of Velcade are scheduled for Tuesday, 2/9 and Friday 2/12. You can check out an Excel spreadsheet of my blood counts starting last May at www.bhsbees.com/larry.xls   Thanks for your continued support!
Update 1/19/10: Thursday 1/14/10 I began a new chemo treatment (Velcade) at Lynchburg's Pearson Cancer Center. This is the third different regimen of chemo combinations I have been on since May 29th, 2009. This drug will not make my hair fall out, so it is growing slowly. I will probably keep my hair short though, because chemo used for a stem cell transplant will make it fall out again. I have had 2 doses of Velcade so far, and the 3rd will be Thursday 1/21/10. The plan is twice a week for two weeks, then a week off. Then twice a week again. The first of each group of 4 doses includes Rituxan. All 8 doses include Dexamethasone (a steroid). A common side effect is tingling and numbness in your hands and feet, and I have felt some of that, but so far it is not too bad. It will be accumulative to a point, as I get more doses. But it should level off. Once I complete all 8 doses, the plan is to go back to UVA probably in late February or early March for a 3rd bone marrow biopsy and CT/PET scan. I am feeling better than I have in over a year, because my red blood count and hemoglobin are improving. I am actually going in to work some days, rather than working from home! Thanks for your continued prayers, emails and cards.
Update 1/1/10: Monday 12/28/09 I went to UVA and met with Dr. Michael Williams. He said that he had talked with Dr. McCarty and VCU/MCV about my case, and agreed with him that in order to have a chance at beating the Mantle Cell Lymphoma, I would have to get into complete remission and then do the allo-stem cell transplant, rather than the auto-stem cell transplant. The allo-transplant uses stem cells from a donor. The idea is that my body would inherit the immune system from the donor. But 20% of people do not survive the transplant. And of those who do survive, 30% to 40% have serious complications. The hyperCVAD  chemo I got at UVA was working to get me into remission, and brought my bone marrow involvement down from 87% to 14% but I had some bad reactions to the main drug, ARA-C. And now the doctors are afraid to give me any more of that drug (they said it could be "catastrophic"). So beginning Thursday 1/14/10, I will be starting a different drug, Velcade, in order to try and get to complete remission. It will be twice a week here in Lynchburg, then a week off. Then, repeat that cycle. Then back to UVA for a 3rd bone marrow biopsy and CT/PET scan to see if it helped. Velcade is known to cause severe numbness in the hands and feet. I already have some numbness from one of the previous chemo drugs (Vincristine). Thanks for your continued prayers, emails, and cards.
Update 12/21/09: Wednesday 12/23/09 I have a consultation at VCU/MCV to discuss an auto-stem cell transplant. After that meeting, the VCU/MCV doctors and UVA doctors will decide what is next for me (more chemo, or the stem cell transplant). Today's blood test showed my white counts are finally coming back up. My red count, hemoglobin, and platelets are finally in the bottom end of the normal range! Only the 2nd time this year. I think all counts will be in the normal range in another week or two. But the 14% cancer still remains in the bone marrow, as mentioned below.
Update 12/18/09: UVA called me with the results of my bone marrow biopsy and CT/PET scan. The CT/PET scan did not show any locations that indicated cancer (such as in lymph nodes, etc). However, the bone marrow biopsy indicated that there was still 14% cancer in the bone marrow. As a reference, back in mid-September, that number was 87%.  So there has been a decrease in the lymphoma in my body, but I guess you can't say I am in complete remission (CR). My spleen, which originally was 20 cm across, is now about 10 cm across. Not completely shrunk yet to the normal size of about 4 cm. Some of that may be scar tissue. UVA and VCU/MCV will discuss what the next step should be, and get back with me. It could well be one or two more chemo treatments at UVA, before a stem cell transplant can be done. I've read that the best results from stem cell transplants are when you are in complete remission going into the stem cell transplant. I can't have another chemo treatment until my white cell count rebounds to normal. Another blood test is scheduled for Monday the 21st.
Update 12/17/09: My auto-stem cell transplant consultation at VCU/MCV in Richmond today was postponed. There were a couple of reasons. The results from last Friday's bone marrow biopsy at UVA are not complete, the results of Wednesday's PET scan are not complete, and the weather forecast is calling today for 10 to 18 inches of snow, starting this afternoon. It is possible I would have had to drive back in the snow. The meeting will be re-scheduled, probably in January. My white cell count is still low, not yet recovered from the chemo at UVA almost 3 weeks ago. Red count and hemoglobin are coming up, but slowly. I hope by next week that my counts will be closer to normal!  Based on what I know about the blood counts and preliminary bone marrow biopsy results, I may be in remission. However, I also know that no one has ever been cured of Mantle Cell Lymphoma. So I am still praying for a miracle.

Wednesday, 12/16, there was a Red Cross Blood Drive at Brookville in my honor and also in honor of BHS Coach Gary Ferguson. I was able to stop by the school on the way to UVA for a PET scan, and visit a few people and also the Library where the Blood Drive was in progress. I could only stay about 30 minutes. It was great to find out that over 100 students were signed up to donate blood!  Thanks to everyone for your part in this great cause. In 2009, I have received 10 units of red blood cells and 3 times I have received platelets. This year was the first time in my life to receive a transfusion, and I am so thankful for people who donate their blood. No doubt, I will receive more in the future, as I battle this disease.
Update 12/11/09: I went to UVA today and had the 2nd bone marrow biopsy. It was not as painful as the first one I had back in mid-September, maybe because this time I knew more what to expect. Results will be ready probably Monday or Tuesday. Then Wednesday, back to UVA for the PET scan.
Update 12/9/09: UVA called and changed my PET scan to December 16th. Still will have the bone marrow biopsy on Friday the 11th, and still scheduled to have consultation at VCU/MCV on Friday the 18th about an auto-stem cell transplant.
Update 12/1/09: I went back to UVA on Friday November 27th to begin the 3rd round of hyperCVAD chemo. This is an alternating cycle between two groups of chemo drugs, so this time was supposed to be the same as the 1st cycle which took 7 days the first week of October. But when I received this group of chemo drugs in the first cycle in early October, it left me with a terrible red rash all over my legs and back, and I spent 4 additional days in the Lynchburg hospital after I returned from UVA. My white counts, platelets and neutrophils were near zero for a week, and I was in isolation at Lynchburg General with no immunity. When I arrived at UVA on Friday 11/27, I was told that one of the drugs would not be given to me for this cycle (Cytarabine, a.k.a. "ARA-C") because it was most likely the one that caused the bad reaction in early October. Not getting that drug cut my visit from 7 days to only 4 days. I returned home late Monday 11/30. I have a PET scan and a 2nd bone marrow biopsy scheduled at UVA on Friday December 11th.  The doctors believe I am in remission, and the bone marrow biopsy and PET scan will show any residual Mantle Cell Lymphoma. Also, on the following Friday, December 18th, as mentioned below, I have a consultation at VCU/MCV in Richmond to discuss an auto-stem cell transplant (using my own stem cells). The stem cell transplant includes a very heavy dose of chemo, after first harvesting some of my own stem cells. The heavy dose of chemo is intended to kill any residual lymphoma cells, but it is also enough to cause death. The stem cells will be given back to me a day or two after the heavy dose of chemo, and in most cases, the stem cells "rescue" you from the chemo. This procedure can possibly provide 5 to 7 years of remission. Without a stem cell transplant, remission could last 1 to 3 years, or less.
Update 11/20/09: Blood tests on 11/19/09 showed my counts are still holding in the good ranges. I now have a consultation scheduled at VCU/MCV in Richmond on December 18th to discuss an auto-stem cell transplant.
Update 11/16/09:  Blood tests on 11/12/09 and today, 11/16/09, show that I've rebounded from the 2nd hyperCVAD chemo treatment at UVA. The schedule for the 3rd treatment has been set for Friday 11/27/09 at UVA. It is a 7 day long treatment with chemo flowing 24 hours a day. It is the same one I had the first of October. After this, I will travel to VCU/MCV in Richmond for a consultation about an auto-stem cell transplant. Then probably before the end of the year, I will get the 4th chemo treatment at UVA.
Update 11/11/09: I completed the 2nd hyperCVAD treatment at UVA between October 30th and November 2nd. This was a different group of drugs than the first treatment, using some of the same drugs in R-CHOP (Rituxan, Cytoxan, Doxorubicin, Dexamethasone, Vincristine), but 3 times as much Cytoxan compared to R-CHOP, given over a period of 3 days, and the other drugs over the next 2 days. At first, I did not think these drugs were going to be as effective as the drugs in the first round of hyperCVAD, since they did not work well during the summer. But after a week or so, my white counts and neutrophils finally did take a big drop, just like with the 1st treatment chemo drugs. This time, so far, my red counts, hemoglobin and platelets are not bottoming out like they did with the 1st chemo treatment, and UVA is saying this is a good sign that my bone marrow is working well, generating good cells!  I have not been as weak this time, and actually went into work a few days days this week, and worked 6 or more hours each time. The next chemo treatment, using the 1st group of chemo drugs (the tougher ones) is scheduled to begin Friday November 27th at UVA. Thanks for everyone's emails, cards, thoughts and prayers!
Update 10/25/09: It appears that the hyperCVAD treatment at UVa may possibly work and get me in remission by spring of 2010. My white count started out at 312,000 in May, 2009 and the R-CHOP treatment here in Lynchburg could not get it below 49,000 (normal is 4,000-10,000).  After the first hyperCVAD treatment at UVA, using Methotrexate and ARA-C, my white counts and platelets and immunity were near zero for about a week! The white counts are now in the normal range for the first time this year!  Platelets are approaching normal too, along with red counts and hemoglobin. This is very encouraging. However, UVA will still probably do either 4 or 6 treatments to make sure I am in remission. After that, they have recommended that I get an autologous-stem cell transplant at VCU/MCV in Richmond or Duke in order to have a longer, or possibly even permanent remission, although no one has ever been declared as "cured" from Mantle Cell Lymphoma.
Update 10/10/09:
From October 1st to October 7th, I completed a very tough chemotherapy regimen (hyperCVAD) at UVA. The chemo flowed pretty much 24 hours a day for about 7 days. This was the first of four to six of these scheduled treatments each month for the next several months. The even-numbered treatments included the chemo drugs Rituxan, ARA-C and Methotrexate. It is a much tougher regimen than the 4 treatments of R-CHOP treatment I received during the summer months of 2009 here in Lynchburg. hyperCVAD uses two different sets of chemo drugs, alternating. I started first on the group normally given 2nd. So for my case, the even numbered treatments in hyperCVAD include the same drugs as in R-CHOP, but three times the quantity, given over several days. The odd numbered treatments in hyperCVAD (normally given as the 2nd treatment) use totally different, and much stronger drugs.

THANKS TO EVERYONE - ("Larry Lewis Night" - 9/25/09)

We were completely overwhelmed by amount of love expressed by so many people at "Larry Lewis Night" game on 9/25/09. It was a once-in-a-lifetime, absolutely amazing night. I am truly thankful for all the work and effort that went into everything that was done for us, and all that was given to us by so many people. We came home and sat and enjoyed going through all the cards and gifts. We were, and are, truly blessed, and I am out of words. If you missed the game, click here to read a message from me to the Brookville-Timberlake community
that I had the announcer read at that game during halftime.
Larry & Susan Lewis
News & Advance Story about 'Larry Lewis Night'

May 1, 2009 - September 30, 2009:

On May 1st, 2009, I was diagnosed with a rare form of Non-Hodgkin's B-Cell lymphoma (mantle cell lymphoma), which is very difficult to treat, and is the most aggressive and deadly of all lymphomas. Only 5% of lymphoma cases are this kind. There have been only 14 cases in Central Virginia since it was first classified as its own unique type of lymphoma in 1991. The 5 year survival rate is only 50%.  Starting May 29th, I began a series of chemotherapy treatments by IV (R-CHOP) that ran through late August. After 4 R-CHOP treatments, I was still not in remission. This disease is normally not curable, and even if you do get into remission, it normally comes back within one to three years and then chemo treatments may not help. Stronger chemo treatments were begun at UVA on October 1st (hyperCVAD), where I was a patient for 5 to 7 days with chemo flowing 24 hours a day. After three of these week-long treatments, four weeks apart, my bone marrow involvement dropped from 87% to 14%. A possible stem cell transplant at VCU/MCV may be done later, which could keep me in remission 5 to 7 years if it is successful. In the meantime, I will be continuing chemo treatments to try and get to complete remission.

During this time frame, I received R-CHOP chemo here in Lynchburg at the Pearson Cancer Center. I received 4 full R-CHOP treatments, plus one Rituxan-only treatment, and at that point, I was nowhere near remission, and I decided to go to UVA for a 2nd opinion.