So there I was rounding third...gonna start radiation to end my "short" journey with HL, and then a butthead of a tumor decided to grow w/in the last couple months of chemo. long story short- it's a whole new ball game. new chemo regimen, and i'll be undergoing a stem cell transplant/high dosage chemo plan at Mayo Clinic. It's been such a whirl-wind, literally about to open a show (i'm an actress), feeling great, last PET barely showed ANYTHING, and then EVERYTHING changes. I now have to give up more than I thought I would have ever had to, even in this year- small price to pay for a lifetime of enjoyment, but I am really interested in hearing about if someone has had a stem cell transplant? what to expect?
thanks
xo
MN-
This blows, I'm sorry to read it. I do have a question-- did you end up NOT receiving radiation because of this development?
Ross
Correct (i would've completed radiation this friday...ugh bummer!!!) The new tumor was at golf ball size in two months, again, while still having the chemo that shrunk a cantaloupe sized tumor in my chest, so that freak grew during it- ANYWAY so they went to a new form of chemo and sent me to meet w/ a hematologist at Mayo ASAP (got another biopsy too,still HL in the same area). In my dream world, my PET scan tomorrow will show this "salvage chemo" is shrinking it, and we can stick to radiation. But- i know they just REALLY want to knock it out completely (of course that's what I want too!), but the plan for now is this new chemo, stem cell harvest, high dose chemo, transplant, recovery, radiation. ooooofda
OK. I'm gonna assume that you're getting your own stem cells (autologous).
Believe it or not--- in the event you need to go through with the transplantation----, it's probably a good thing that you didn't get radiation treatment before the transplant, and I base this on two big studies of HL patients and stem cell transplants. Radiation as part of treatment before a transplant (meaning part of primary treatment when a transplant isn't yet a consideration) is associated with a higher risk of secondary cancers (generally an NHL) later in life. Another thing in your favor is that you've only undergone one chemo regimen (salvage chemo notwithstanding), since the more you've gone through before transplant, the higher your risk of a ****** outcome.
Ross
(PS -- oofda, that's so Midwestern, you must be from Minnesota. If not Minnesota, then Wisconsin?)