by seebee on Sat Nov 14, 2015 1:59 pm
TracyJ,
My heart is with you! Glad you are seeking out opinions. For me, after a time of anxiety and fierce research, I have always eventually come to a place of calm: one course just feels right. I can always back it up with logical analysis, but, in the end, I wonder if my emotions just land on something. And that's it. I haven't had to make the allo choice yet, though my doctor thinks it's in my future. So far, each treatment we choose works, but for a short while. So your decision process is important to me!
Isn't there some data out there that full matches are not necessary? In fact, that even half matches may be preferable in that some (but not too much) GVHD fights the myeloma? Sorry I can't back this approach up with data. Maybe someone else has a reference at their fingertips. Perhaps you may want to ask at Dana Farber? Maybe there is an option where you don't have to wait for a full (or near full) match? I feel that part of your anxiety is about the wait for a match. If one could be available when you are ready rather than when it's found, part of your anxiety about the decision would be lifted? Of course, it all depends on how fast / aggressive your multiple myeloma is. It sounds like you could wait a while, if you were comfortable that a match could be found when you need it?
FYI: My decision right now is to wait as long as I can before allo – to push all the other options as far as they will go first. I'm already on a trial that wasn't in the picture a couple of years ago. You never know what may pop up. I am calm and comfortable with that decision about 80% of the time. I trust my doctor, who is smart, experienced, and wise. The other 20% of the time I wonder about a different approach that throws everything available at it in quick succession. But, I'm also tied up in that I have to keep working to afford the health insurance that will pay for an allo. I could retire, but Medicare does not cover allos. And if I take too much time off, I fall into part time and insurance is not covered by my company.
When I come to the time for my own decision, I would do as you are and go to the top institutions for opinions. I've not thoroughly researched it, but since you went to Penn, you might also check out Jefferson in Philly that specializes in half match allos.
Coincidentally, my primary care physician had non-Hodgkin's and had a mini-allo at Dana Farber 8 years ago. He considers himself cured and works in internal medicine. Dana Farber is probably on the conservative end, while Arkansas is on the progressive end. Many more institutions align either way. I'll get opinions from differing philosophies, even though it may make the decision harder. I just couldn't decide unless I knew all the options and some way of weighting them. I'll decide what aspects are most important to me and weigh each option along several lines of analysis: e.g., success, risk, QOL, schedule, etc. Then, once all the data is out on the table, choose what feels best.
Not easy. And hardest during the time of gathering data. I'm an engineer, so learning how to tap into my emotions has been challenging. But I've found that works for me. A time comes when I'm DONE with research. My heart won't dig any further and it takes over from my head to make the decision.
I'm wishing you peace and calm as you work through the decision process and, ultimately, conviction in your choice!
