“It’s not about waiting for the storm to pass. It’s about learning to dance in the rain!” – Unknown
We have a very active FB MM Support Group (check my resources page if you haven’t joined yet). So far with over 400 members we are very thoughtful, kind and supportive toward one another, regardless of our treatment choices, knowledge base, or MM presentation. Anyway hat tip to Cindy who put this little nugget up there.
I don’t want to comment too much on Guy’s presentation. He has chosen not to do a SCT and presents his view on why. I don’t totally agree with all of it, but I agree with so much of his presentation which is articulated very well and I came away feeling connected to a kindred spirit on his attitude, view of life, multiple myeloma and clearly his passion to understand his disease and his treatment options. I cannot argue one bit with the choice he has made for himself as he has clearly done his homework.
A couple things that I will comment on is that, he mentions his stage of MM was Stage 3A. This is a great example of what I have stated in my recent post that the Stage at dx does not determine outcome in treatment.
He mentions that if you are 65 you are not eligible for SCT. This is true in his country, Canada, but not true in the USA. In the USA however, Medicare will only cover one, and not two (either later on or tandem up front).
I have not heard about, nor seen studies, that the managed care route is producing such longevity, so this is great news. Might be worth finding those studies out on the net from the ASH Conference.
He is not in Complete Response (they are changing CR to no longer mean complete remission but complete response, I’m trying to adjust). In the old days CR was the gold standard. If you did not reach it, doctors were not very optimistic. This is just one more area of debate (don’t you think we have enough of that!) in the medical community regarding prognostics of overall life expectancy. However, it has seriously quieted down with the “managed care” guys treating MM as a chronic disease.
But what did I take away from this? His understanding of his condition – A+. His take the bull by the horns patient advocacy – A+. His thoughtful presentation on his decision – A+. His optimism, hope, calm acceptance – A++++++++. If you take away nothing else, take away that.
Guy Vincent, Myeloma patient dx in 2008 at age 47.
If you are trying to “decide”, I have included Barlogie’s presentation, and the importance of sustained CR (emphasis being not on getting into CR, but being able to stay there. I would say this is the factor for the managed care route as well). And questions to ask your doctors when consulting.
