One thing I think is VERY important for patients following our reporting: Read what we all post with the understanding that science is always evolving, and multiple myeloma (MM) is a very individualistic disease. I say this because I understand some people will read about different treatment paths and second guess their care, it’s human nature, especially with a shape-shifting disease like MM. I write this because I just did it!

Here’s my example: I have the most aggressive form of MM: Primary Plasma Cell Leukemia (pPCL) and I just read a few abstracts on pPCL and that panicky feeling hit me. I know any patient reading this knows that feeling! The abstracts highly recommend a Stem Cell Transplant (SCT)—one even suggests tandem transplants. As of yet, I have not had one transplant….here comes that feeling… So I take a deep breath and think…I am in a very strong remission, MRD^-6 (minimal residual disease), and I have faith in my Myeloma Specialist. I realize that although I presented with pPCL, I was very healthy. I had no bone lesions. I had no organ involvement. My kidneys were excellent, so I most probably started in a much better place than most pPCL patients. MANY different variables will direct the care you receive: What’s good for one is not necessarily good for another.

So, if you get that uneasy feeling when you look at the abstracts and data presented, I encourage you to stop and think. Remember there are people all over the spectrum of the statistics you see. Read it, ingest it, use it to help you make educated decisions, and have educated discussions with your care team.

Terry Glassman
@TerryGlassman