I write this blog each and every day from a patient’s perspective. But considering the e-mails I get requesting advice from other patients and caregivers, I aspire to learn as much as I can about our cancer. I want to be as informed as possible when I respond to my new friends–and I need to learn as much as possible about multiple myeloma so to better understand my own treatment options. To that end, I have been taking courses online through the Cancer Network. I didn’t realize it at the time, but my decision, almost three years ago to delay my stem cell transplant (SCT or ASCT) four months after my diagnosis, could be classified as experimental–or even radical. Here is the conclusion section from one of my courses, Tailoring Initial Treatment for Newly Diagnosed, Transplantation-Eligible Multiple Myeloma :
It is possible that as experience grows with thalidomide, bortezomib, lenalidomide, and agents that are now investigational, the role of ASCT in myeloma treatment will become less routine. For the foreseeable future, however, consideration of ASCT as part of first-line myeloma therapy is appropriate for eligible patients. Numerous induction regimens now meet the goals of achieving CR and allowing subsequent stem cell collection, with acceptable toxicity. Newer combinations, especially those containing bortezomib and/or lenalidomide, are associated with depth and quality of response likely to result in better survival in these patients.
I gave the decision a lot of thought–spoke with a number of experts in the field–and concluded there was little, if any risk in waiting to get my transplant. It just didn’t make sense for me to interupt a therapy (Rev/dex) which was working so well–dropping my M-spike down to .4 in only three months. In retrospect, my decision still holds up. I was in complete response (CR) for over two years. This month I started my 34th cycle of Revlimid. Although my numbers are starting to creep back up (most recent M-spike back to .3), I still have the option of trying Velcade and/or a clinical study trying vorinostat before I might need to go to SCT.
I spend two chapters writing about the road I took before settling on my decision to wait on a SCT in my book, Living with Multiple Myeloma (Mira Press, St. Louis, Missouri). No matter which therapy road you choose, keep the words of Mayo Clinic’s Dr. Rajkumar in mind: “As long as you are using one or more of the novel therapy agents, there is no right or wrong way to to treat your myeloma.” In other words, just keep trying different treatment combinations. When you find something that works–stick with it–even if that means delaying a SCT for a while.
Feel good and keep smiling! Pat