It seems like it must be SCT season. Lots of people on the list are going through them right now. Dan is home from his, after 17 days in the hospital. I wish I wasn’t so afraid of the process. In some ways, it would be good to get it over with. I guess I want to know how my disease responds to treatment and have some idea about relapse times. I know someone who had 2 years of remission from VAD. I would guess there are people who have had lengthy remissions from thalidomide and dex. If that’s possible, then I want to avoid the toxicity and complications that come along with SCT as it’s currently done.
Beth — get brave – get your stem cell harvested when you are in remission — they can freeze them for use later. I’ve finished five months of Thaldimide/Dex at the higher doses, and did not get a remission. Now I’m a week out of my first 96 hours of VAD and on day 7 of dex this month, and feeling great — even thought I’ve had three pneumonias since April 03. I’m finding Dex easier without Thaldimide and taking Insulin to keep my sugar lower while I am on Dex.
I tried to deal with the sugar without insuln for 5 months — and felt much worse — wore out much of the time — lots of days in bed. I had a Port installed 13 days ago — it was rough for the frist 2 days — but don’t let the hardware get in the way of treatment. 4/14/04
I can’t even imagine what that must be like. I’ve never had traditional chemo. I’m doing well on 50mg thalidomide/40mg dex. I don’t think my MM is aggressive. I’ve had no bone problems, no infections, no anemia. My doctor says my hct and hg are better than his. If it weren’t for the drugs I take, I would feel great. I’m terrified of putting myself in the hospital and killing my immune system.
comment As soon as my butt hit the bed, they stuck an i.v.line into by port (I love my Bard MediPort!) with Atavan. An hour later they started the super high dose Melphalan (THE MELPHALAN WALLOP!) – a 1hr infusion, followed by more i.v. antiemetics. The next day, same thing, but the Atavan was kept running for the entire 21 days. I really had no problems, Beth. Once again, tho, good nursing care makes all the difference: having a pretty gal wipe my fevered brow works wonders!
commentGood Morning again! IF you really trust your onc., let him/her make the decision on an SCT. My oncs (and I think they are the best!) strongly recommended the SCT, after my experience with HD cytoxan/dex kicked the heck out of the myeloma. The experience was NOT a fright! I was hospitalized for 21 days, as I have no care-giver (widower)…but normally they do the whole she-bang on an outpatient basis, with each day spent in the clinic. I have come to the conclusion,that the single most important factor in an SCT is the nursing care – Fairfax Hospital in Northern Virginia gave me “loving” care.
Have a nice day!
Bob Oberle (ye olde vitamin E proponent)
I would definitely do inpatient. I also have no caregiver. UNC does inpatient. The high dose chemo scares me to death. My dr. said no rush just yet. I will keep on my current tx until it stops working and then hopefully be ready for SCT.
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