One of my doctors told me that had I walked into their offices with Amyloidosis 10 years ago the outlook would have been nearly hopeless – the medical community simply didn’t know what to do. Research has changed that.
Finding the right Doctor. Not many doctors know a lot about Amyloidosis. I had to find someone specialized with deep knowledge. My family quickly found a most amazing and super-responsive doctor at the Mayo Clinic. It was time to fight the odds.
Wanting to be aggressive. I wanted to be aggressive in my battle, but not foolish. My doctor’s recommendation was a stem cell transplant – an incredible, quite risky procedure that was discovered as a means to fight Leukemia in children. Unfortunately I wasn’t a transplant candidate due to a heart marker and kidney issues that put me in a very high-risk category. Though disappointing, different options needed to be considered.
Velcade® – My doctor decided on a non-conventional approach, putting me on a chemo treatment using a fairly new chemo drug funded in part by Leukemia and Lymphoma Society called Velcade. This drug was created mainly for Myeloma and Multiple Myeloma patients, but my doctor thought that in the short-term it could really help me. Velcade was my bridge treatment, not to get rid of amyloidosis, but to get my body into shape for transplant. By holding off the creation of amyloid proteins long enough to let both my heart and kidneys recuperate a bit, it took me right out of the very high risk category.
November ’08, transplant. As I mentioned, stem cell transplants were originally developed to treat leukemia. Today, the treatment is still primarily for blood cancers, but it has been found to work for other diseases, like Amyloidosis as well. This has been the case with many of the drugs that the LLS has helped fund.
A stem cell transplant is a crazy concept when you really think about it. First, your bone marrow is stimulated to create more stem cells than normal. When the counts are high, stem cells are extracted and saved (they’re actually frozen). Next, you are give large amounts of high dose chemotherapy that, within a few days, will begin to kill off all of your bone marrow and your entire immune system with it. Next, you get your stem cells back, then you wait.
It wasn’t bad at the beginning – I felt pretty good for the first few days, ate normally, went to a movie. Then the chemo kicked in hard and fast and suddenly everything changed. The thought of food wasn’t even funny. The number of pills I had to take each day was unreal. My hair (and beard) started to fall out. And very quickly I found that the only time I could stay awake was when I was being sick. Ugh.
And so we would count the days. For me they were a blur. For my caretakers for this part (the world’s most amazing wife and incredible brother) it was no walk in the park either. Scary days and long nights in the hosipital; infections that are unidentifiable and no immune system to fight them off; unknown rashes; fever; on and on and on. And then one day, suddenly and miraculously the immune system starts to kick in.
Success. To put it simply, my transplant worked. It wasn’t pretty, in fact it was long, painful, risky, stressful, and scary. But I had a lot of important factors on my side including my family and friends, my doctors, my age, and the fact that my heart was so strong from running the marathon for LLS.
Today, my life is pretty much back to normal. I work full time, exercise regularly, and spend as much time with my family as possible. I am participating in the campaign for LLS’ Man of the Year to raise money for research that will help to develop treatments like Velcade and stem cell transplants. Treatments that will help people like me live longer, happier lives. Each dollar you contribute in my name counts as a vote. Please click here to make a donation.