Yesterday I had my regular appointment with my hematologist. I am now nearing the end of my fourth twenty-eight day cycle on pomalidomide (two cycles at a low dose of 2mgs/day, now on to my second cycle on the regular dose of 4mgs/day). I have not had any of the signs of a bad reaction to the drug (which is related to lenalidomide, the drug that I could not tolerate in the spring of 2012). So far the blood tests have shown that the free light chains are staying fairly stable. While they have not dropped significantly (i.e.: below our goal of less than 100) they have also not gone up significantly (they are between 140 and 240 at this point). My doctor says that while he would ideally like them to be lower this is still a good result (given they were at 1600 when I was diagnosed and have been back up as high as 700 during the past few years). We will continue to monitor the free light chains and continue with pomalidomide so long as it can hold the free light chains relatively stable. The main concern is keeping the amyloids as low as possible to prevent amyloid disease from affecting my organs. Amyloidosis is a hidden disease that does not show itself until there is obvious organ damage. I am fortunate that we discovered this before any damage has been done as it has has given us the opportunity to undertake preventative treatment. It turns out that because amyoidosis affects so few people it is an orphaned disease in the research community where there is little incentive for researchers to invest time and resources into understanding and treating it.
I am to see my doctor again in three months. In the meantime, we will continue to monitor the free light chains with monthly blood tests. I will stay on pomalidomide (daily for 21 out of 28 days) and dexamethasone (steroids every Monday). The main side effects continue to be the weekly roller coaster ride on dexamethasone, along with weight gain. While I am not thrilled to be living with steroids I am grateful that, along with pomalidomide, the steroids are controlling the production of amyloids in my blood and that this is lowering the risk of suffering organ damage that would bring with it much worse symptoms.