It looks like I'm edging closer to a SCT; I met with the transplant doctor today and had a very good discussion. He wants to do some tests before definitely recommending that I go forward with a transplant - PET scan, bone marrow biopsy, 24-hr urine test. I have never had a PET scan and haven't had a biopsy in a year or so. I was doing the 24 hour tests almost every month but my regular oncologist gave me a break from them recently because they weren't showing anything that was of much value.
Apparently, I have "oligosecretory" multiple myeloma, which was the first time I'd ever heard that phrase - the only marker that's really been useful, other than the biopsy, has been the Kappa light chains. These have been slowly rising out of the normal range for almost a year (about the time I stopped taking the dexamethasone and dropped my Revlimid dose from 25 to 15) All of my other numbers are still looking good. I did recently have a complete bone survey and those results were good - there are still some small lesions, but no new large ones and some of the ones that were there back in 2010 are gone. Hopefully the PET scan will not reveal anything different!
This doctor says that assuming these tests don't turn up anything unexpected, he'd recommend my going back on a Rev/dex/Velcade combination to get back down into a good remission, then continue with those cycles until transplant. He didn't seem overly concerned about my having the transplant in the next few months vs., say, six months. Of course, the longer I wait, the longer I'd have to continue with these drugs.
My dilemma is that, while I'm leaning towards getting it over with and having it, say, in January or February (assuming my numbers are OK by then), my son's college graduation is in late May and I really, really want to go. And I would of course like to be in decent shape for it (it'll require a 6 1/2 hour drive down to his school and a weekend in a hotel.) The doctor was understanding and said he had no problem with my waiting until after this event is over. But that means having the whole thing hanging over me for at least 6 months.
For those of you who've gone through it, what do you think? Assuming nothing goes wrong, and I have a "normal" recovery, how will I feel by the end of May if I have the SCT in, say, late January/early February? Will I be OK to travel? (I won't even mention my desire to not be bald in photos - but of course I'm also thinking about that. There are always wigs...) I am in good health, other than the myeloma, of course
In a way I'm thinking that doing it in the dead of winter would be better because, really, what would I be missing while I'm holed up in the hospital? (We live in upstate NY so our winters are gray, snowy and cold.) Of course dh might have trouble getting to/from the hospital to see me, but we only live about 10-15 minutes away.
Many thanks for any thoughts on how to best make this decision and move forward!
Karen
