Amyloidosis – The Next Chapter by Kevin R. Anderson, MD
June 30, 2010
The Next Chapter
Since I last wrote on this site over a year and a half ago, much has happened. It was determined that the drug Revlimid which is used to control primary amyloidosis, may have caused me to go into heart rejection. In late December of 2008 I was started on Velcade and Decadron. This served to stabilize my light chains but not lower them. Additionally, Velcade made me feel terrible. After discussion with Dr Schrier and Dr Witteles, we decided to proceed with an autologous stem cell transplant. Dr Arai is the member of the amyloidosis group at Stanford that specializes in Bone Marrow Transplants. She had treated a number of patients with amyloidosis, but she had never treated a patient with a heart transplant. That does present some specific difficulties in that I was already immune-suppressed and the timing of stopping and starting my essential medications would be a critical factor.
My sister Leslie, a Physician’s Assistant who has spent her career taking care of bone marrow transplant patients strongly urged me to go back to the Mayo Clinic where they had experience with BMT after heart transplant. I responded that somebody had to be the first patient at Stanford so that they could learn. I figured that with my medical background, tenacity and optimism, that should be me. (Notwithstanding the pragmatic advantage of proximity) I did, however, find an article written by Dr. Lacey from the Mayo Clinic on their experience with BMT after heart transplant for amyloidosis and brought it to Dr Arai to discuss. She already had a copy.
All of the doctors explained that another recent article could not prove that BMT was better than chemotherapy. However, they all ‘felt’ that it was better for long term remission. Here in lies a fundamental conundrum for both patients and doctors; making critical, life altering decisions based on incomplete information. This is where hard science, experience and intuition coalesce. I knew the risks and was willing to take them with the chance that I would no longer need to take chemotherapy. It was a leap of faith.
The Mayo experience showed a 65% success rate with BMT in a total of eleven patients. Of course, I know that statistics are meaningless in such a small group, but I liked the trend; a two out of three chance of clinical remission. However, the article also revealed that two of the eleven patients died of complications of the BMT. The same article stated that only 10 out of 110 patients actually qualify to get a heart transplant in the first place, and, if they don’t get a heart transplant, 50% die within 6 months. I had already beaten enormous odds when Stanford even agreed to put a new heart in me. It was time to take another chance.
In late February of 2009 I entered the bone marrow unit to begin aphaeresis after preconditioning with Neupogen injections to increase my stem cell count. Mine was not an overwhelming response as it took four days to harvest sufficient cells for the transplant. As a pioneer, I decided to daily document my treatment on my blog and give a health score to let readers know how I was feeling.
(www.kevinandbarbie.com March 2008) On March 10 and 11 I received high dose chemotherapy to kill my bone marrow. This was Melphalan 70 mg/m2. Typically 100 mg/m2 is given, but the Mayo experience found this too toxic for heart transplant patients. On March 13, 2009, my boys birthdays, I received my autologous stem cell transplant.
My course was complicated. Six days later I developed bilateral pneumonia and went into septic shock. This was associated with kidney failure, delirium and a gastrointestinal bleed. I was close to death, but I was never worried. Somehow I knew I would be fine. I remember the look on Dr Arai’s face when she would visit me as I had felt the same look as I cared for patients in septic shock praying that they would ‘turn the corner’ and start to improve. She would ask, “How are you feeling?” and I would respond as I always do, “I’m fine.” They did their magic and within two days everything started working again. My nurses were amazing.
A week later I left the hospital. My recovery was rapid only to be complicated two months later by another setback. My light chains did not only not decrease, they doubled. The stem cell transplant had failed. Additionally, I was incredibly weak with diarrhea that bordered on dysentery. I was sure that amyloidosis had now invaded my gut and that I would soon succumb to dehydration since I was secreting all of my water into my bowels. This was in mid June of 2009 just after I finally returned to work and within two weeks had to be admitted to the hospital for dehydration. My doctors at Santa Clara Kaiser were excellent and through a colon biopsy found that I had a viral infection with cytomegalovirus (CMV), (This is a common infection in immune-suppressed patients). Appropriate antiviral drugs were given and within two weeks, I felt better than I had in over five years. Then life really began. I went back to work as Chief of Urology in Sacramento and Roseville where I continue today. I am seeing patients and doing surgery and striving every day to return this wonderful gift I have received. I am back on Revlimid but at a lower dose and only every other month to decrease my risk of heart rejection. This has lowered my light chains significantly, albeit they are still above normal.
However, I am OK with that as I have a balance between my side effects and my quality of life. People ask if I am glad I had the stem cell transplant. I have no regrets. It was the right decision with the information we had at the time. I also think my doctors learned valuable lessons from my experience.
My wife, Barbie, taught me that if you can never go back to what you were, you accept the ‘New Normal’ and make the best of it. As for me, my motto remains, “Find the beauty in every day.”