Timing is everything. I had the opportunity to attend the Northern California Amyloidosis Support Group yesterday in Walnut Creek. As a physician, I referred patients to support groups, but I never fully understood their value. Especially with a rare disease, it is very reassuring to hear the experiences of others. What is more interesting is how much has changed in a few short years. There were 9 people there with amyloidosis, 4 of us were newly diagnosed. The other 5 had all had stem cell transplants about three - four years ago. For them, chemotherapy existed, but had limited application and heart transplant was never offered. Of the four new patients, two had had a heart transplant, myself and Debbie (Debbie is a Kaiser patient that I met 3 days before my transplant whose course with amyloidosis parallels mine, but with a 6 week delay) and two were on drug therapy. Now there are choices which didn't exist before. This is a very good thing, but can sometimes be confusing as well.
Last week when I went to see my cardiologist, Dr Weisshaar, in Santa Clara, the pressing question was what to do next with me. Dr Weisshaar called and spoke with Dr Lacy, the oncologist that saw me at the Mayo Clinic and she did confirm that Revlimid could lead to heart rejection. She also added that waiting untreated for the Stem Cell Transplant sometimes might allow the amyloid to progress as amyloid is quite unpredictable. As I heard this, they were like more pieces of a puzzle that began to reveal the underlying picture, which in this case was a plan to proceed. There are 3 drugs that are commonly used to treat amyloidosis, Revlimid, (which I probably won't take again) Velcade and Melphalan. The latter can suppress stem cells and is therefore not a great option if you plan on proceeding to transplant. This leaves Velcade. Initially, I was hoping just to be treated with medication and avoid a stem cell transplant, but I feel that a transplant is probably likely and, actually, I would accept that if it means a more permanent cure or control of the disease without having to continue to take steroids. I really don't like the idea of being on steroids for a long time. My doctors met on Friday to arrive at a plan which I will learn of on Tuesday. I am prepared to do what they recommend, but I hope it includes interim chemotherapy until my heart is healthy enough to have the stem cell transplant. I will continue to take the weekly high-dose steroids (Decadron) to at least remind my misbehaving plasma cells that I am aware of their shenanigans.
Otherwise, I feel great. My strength is returning; I walked two miles today. Food tastes wonderful and I am not such an impatient 'toad' to Barbie. They warned me that the steroids would do this, but I thought that I could control it. Well, I was wrong.
I love the process of discovery, even if I am the one being used to reveal the right path. Like I tell, Debbie, "I'd rather it be me than you." If what we learn from me makes it easier for her, it's worth it. Nothing makes you feel more alive than taking risks.
Can't wait to see what's next.