Thank you for the links to studies on auto transplants and your thoughts on the original premise of the post.
My husband recently experienced his first relapse since being diagnosed in 2011. He’ll soon need to decide if he’ll do an auto stem cell transplant. His stem cells were collected in 2011, but he decided to postpone transplant at that time while he participated in a clinical study of 24 cycles of Kyprolis / Revlimid / dexamethasone. Upon completion of the study, he took Revlimid / dexamethasone maintenance and achieved stringent complete remission, but then slowly began relapsing in 2015. He will start his second cycle of Ninlaro and Cytoxan next week and hopefully we will start to see a decrease in the M-Protein again.
Your statement:
Aggressive upfront therapy is for patients who think long term. If you are more concerned about the short-term, less aggressive therapy is a better choice for you.
does not apply to us. We have thought about nothing else besides the long term since 2011, even though my husband did not elect to have an early transplant. Many factors go into considering when to have a transplant. Thinking about our long term future was and still is a paramount concern.
You also wrote:
What patients do not have to do is go out of their way to over dramatize the side effects of an auto and act like novel agents have no side effects and do not reduce quality of life”
I don’t recall reading many posts implying novel agents had no side effects and didn’t reduce their quality of life in some way. To the contrary, I think many posters discuss how their QOL has been negatively affected. The Beacon forum is full of posts where people say they’re taking the drug [fill in the blank], experiencing the problems of [fill in the blank], and ask how others handle similar problems.
I don’t think people deliberately overly dramatize their experiences with auto transplants. Instead, I think they are honestly relating what happened to them. The American Cancer Society lists possible auto and allo transplant complications on its website here and here. Granted, many complications are for allos and the ACS identifies those which can be excluded from the auto transplant consideration. And I agree the timing of early vs. late transplant is another factor.
Personally, I think it’s valuable to read patient/caregiver posts about their different experiences, including transplants. I followed Pat K from 2011 to the very sad last updates. I’m very grateful he wanted to educate the myeloma patient community by sharing both good and bad experiences. I definitely agree hard data provides us with important statistics to consider (and I greatly appreciate your finding and posting them), but for those who are wrestling with the decisions if and/or when to transplant, reading personal experiences can provide important insight not found in statistical data.
The Beacon’s thread for Welcome & Getting Started encourages the sharing of patient experiences (see here and again here). I think it would be very unfortunate if, after reading this particular thread, anyone got the impression that posts about their personal experiences are not welcome here.
Finally, I truly look forward to posting congratulations to you in the future for being cured as a result of your allo transplant.
