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Nineteen Year Multiple Myeloma Survivor’s Advice: Forget The Stats!

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Nineteen Year Multiple Myeloma Survivor’s Advice: Forget The Stats!

I wanted to share this e-mail “rant” I recieved from Barbara, a nineteen year multiple myeloma survivor this weekend, about an often discussed topic on this site–patient survival statistics:

Any up-to-date review of patient response to current treatment regimes suggests median new patient survival greater than 7 years. UAMS would say
closer to 10. MDA has the CR group at 9.7. My own onc, based on his MM
patient history, is saying 7 to 8. Our local support group members are mostly
functioning well at 6+ (some way beyond that) with very few dropping off
along the trail.

What I find is always lost whenever the “how long” question comes up, is
that it ignores the very simple fact that new treatments are being developed
at quite a good pace. If you live another 2 years, there will be new
options for you when you relapse. Add another 2 years on that, and
another…bingo, you’re now going strong for another SIX years.

Plus, people are diagnosed with myeloma at different stages in the
disease. Someone with severe bone damage or kidney damage at diagnosis can’t be
compared to those of us (like me) diagnosed by blood work or by some other
fluke. Folks with MGUS can’t even say for sure that they will EVER get
active myeloma.

All I know is that 19 years ago, when I was diagnosed, there was only one
protocol: melphalan and prednisone. And back then, just bone marrow
transplants. Stem cell transplants were just emerging when I had one in 1994.
Since then, I have benefited from many of the new drugs out there:
thalidomide, arsenic trioxide, and revlimid. Plus, of course, dex. I’ve yet to
use cytoxan or velcade, to say nothing of the newer things in the pipeline.


That’s my weekend rant. Go, enjoy, keep hangin’ in.

Thank you for giving me permission to share your feelings with my readers, Barbara!  I know reading it made my day!  Feel good and keep smiling!  Pat