after velcade

It has been nearly two years since I began treatments with Velcade (bortezomib) and dexamethasone. Last summer we added cyclophosphamide to the treatment in order to extend its effectiveness. The second round of ten treatment cycles ended last month. Yesterday I visited my hematologist to discuss next steps. The first piece of good news is that my free light chain count is only up from 100 to 125 in the thirty-five days since my treatment ended. While the number is on the rise it is not a large enough increase to call for new treatments to begin. Yay! It means I will continue to have the free light chain blood test taken monthly. When the numbers increase more rapidly or incrementally become significantly higher we will begin a new treatment regime. In the meantime, I can live without chemo (including, of course, my old friend dexamethasone). The other piece of good news has to do with the next treatment ...

Canada approved pomalidomide (Pomalyst) in January for patients with relapsed and refractory myeloma. Though it has not yet been approved for funding through our medical system, in the meantime, the drug is being made available to people like me through a compassionate access program funded by pomalidomide's manufacturer, Celgene. While it is a promising treatment there is no guarantee that I will not have a similar reaction to pomalidomide as I had to its predecessor lenalidomide. We will wait and see. When the time comes to begin treatment my doctor plans to start with a low dose and to watch for any symptoms of the side effects I experienced previously. As pomalidomide is taken orally I will not need to visit the hospital to receive treatment. The steroid dexamethasone will be back in my life but this not a surprise. In the meantime, I plan to enjoy the coming days lived without potent chemicals in my body. This is a particular gift as we are expecting two more grandchildren to arrive in our family - one in May and another in June. I can hardly believe that I will soon be Papa to seven. In the midst of my new life lived with myeloma and amyloidosis I find myself so blessed by these little ones who fill our home and lives with love and energy.