Mine is a new generation Amyloidosis story. It is early days, but I may be a long-term survivor. Why new generation? So much has happened, and is happening, that a pre-2009 diagnosis may be one made in the “dark ages”. Newer, more innovative treatment regimens have been tried and are working. Oncologists are more aggressive in treatment as they develop more confidence in the newer drugs and as more research is done on Amyloidosis. I am not putting down those diagnosed in the “dark ages” for the advances that have taken place occurred because of them. They were” dark ages” because less was known and an Amyloidosis diagnosis could have been a death sentence. Those recently diagnosed are standing on the shoulders of those earlier, brave patients.
My story begins in mid-2009, when I noticed some puffiness in my legs and was shorter of breath than I would like. Everything came to a head, however, when I started to pass out in October 2009. Passing out is not a good thing and is worrisome to doctors. Initially, the thought was that the cause was only heart-related, so they did all the usual things, carotid arteries, blood clots, echo cardiograms, etc., but there were no apparent problems. Finally my cardiologist thought of Amyloidosis, and gave me a stress EKG, and forecast that with stress, my blood pressure would drop instead of rising and I would be in danger of losing consciousness . Lo and behold, that is exactly what happened. So she gave a preliminary diagnosis of Amyloidosis and congestive heart failure. However, to confirm all of this, I would need to have a cardiac MRI and a bone marrow biopsy done. So she sent me to the VCU Massey Cancer Center in Richmond, Virginia.
On December 10, 2009 a firm diagnosis was made of Primary (AL) Amyloidosis-Cardiac, Multiple Myeloma and significant deposition of Amyloid in my heart, impairing its function. My bone marrow was 77% plasma cells, when 3-4% is normal, meaning that there was minimal production of the all-important red and white cells and platelets. Given about three months to live, and being advised that I should get my affairs in order in a hurry since my quality of life would swiftly decline absent medical intervention, my oncologist stated that this was the last, best chance we had to control this all-destroying disease. Let me add that at the age of 76, and with my complications, I was not a good candidate for SCT. It was chemo all the way, or nothing.
So I was started immediately on an initial, front line, chemo regimen of Velcade, Dexamethasone and Melphalan, administerede weekly for 6 months. The melphalan was dropped from the cocktail in June 2010 after six months, but the weekly cocktail of Vel/Dex continued unchanged until November 2010. At that time we went to a cycle of five weeks of on the Vel/Dex chemo and five weeks off chemo, which continues to this day. There were three phases to my treatment. The first was to protect my heart, while slowing the production of unwanted blood proteins. The second phase was to control the blood cancers and continue chemo to attempt to stop and reduce the deposition of Amyloid in my heart, so that my heart could function better, and the third phase was to prevent the recurrence of the blood cancers, while continuing to work to reduce the amyloid deposits.
Nothing is definitive as yet. However, my heart function is visibly stronger, my symptoms have disappeared, I feel very well, and can exercise and do everything that a healthy male my age can do, and possibly more, but I should be moderate. Moderation isn’t easy for me, but I am trying not to get too excited about anything. Earlier I mentioned that at diagnosis my bone marrow contained 77 % plasma cells while 3-4% was normal. Well a recent biopsy disclosed that my bone marrow now contined 1-2%, which is below normal.
Why have I had such seemingly good results? I have no idea. It is probably due to a number of things. I wasn’t afraid of dying, which meant I could focus on living and being happy and positive. Since everything being proposed was for my benefit, I spent little time pondering. I just said “Bring it on”. I exercised moderately, kept busy and active, and rolled with the punches. Importantly, I was started out almost immediately on a big cocktail, so that noticeable improvement came rather quickly, which made it easier to be positive, and remain so. Finally, Velcade is a targeted chemotheraphy agent, and my diseases must have made a very good target. No one thing did it, but I believe everything contributed. Importantly for one’s psyche, being positive allows you to be happy, and if you are happy you stand a much better chance of getting better.
So will your experience be better, or worse, than mine? I don’t know. However, I do know that those recently diagnosed have a far better chance of a good outcome than those who came before us, since the drugs are better, and getting even better, research is opening up new avenues for treatment, and doctors are gaining greater confidence and experience in treating this formerly little known disease. So be hopeful, work hard to stick around, and things can only get better and better.
John K. Webster – Dx’d. 12/10/2009- AL Amyloidosis-Cardiac, MM and congestive heart failure.
Treatment-Vel/Dex/Mel .
PR and maintenance- 11/2010.
Written April 12, 2011. To be revised as needed.
P.S. I have been extremely lucky. My oncologist came from the National Cancer Institute (NCI) so she sees and has seen the big picture, and my hospital, VCU Massey Cancer Center, may be upgraded to the designation of Comphrensive Cancer Center by the NCI, which will put it in an elite class of 44 institutions including the likes of Mayo, Sloan Kettering, and M. D. Anderson. to name a few
UPDATE: January 21, 2012. I recently passed my 2 year anniversary from diagnosis with Primary (AL) Amyloidosis-Cardiac and Multiple Myeloma. At diagnosis I was told that I only had about three months to live. Presently, my oncologist, “The Chemo Queen”, says my light chains are normal, as are my proteins and other blood work. My last chemo was three months ago in late October 2011, and only if there is a flare-up will we resume it. It would also appear that the Amyloid deposits in my heart have been reduced. So my health continues to improve and I am trying to rebuild my stamina by increasingly active exercise. My progress continues; has been very good; and I am ecstatic. Based on my experience there is much to be hopeful about, so hang in there and be positive. Miracles are happening every day, and more are on the way. I am living proof that that is true.