Dear AC, I think you’ve hit the nail on the head about the side effects of stem cell transplant. The problem is that we have to be told everything that CAN go wrong. Most of us do have some of these listed side effects, but most of us don’t get all of them, or the more serious ones. SCT doesn’t work for all of us, but neither does any particular drug.
Statistically SCT works and extends a period of stability (which we often call remission) so most of us in the UK will agree to it.
For me certainly it was much easier than I’d imagined. The fear was much worse than the reality. I had nasty diarrhoea, felt a bit of nausea and was sick 3 times. I was totally zonked out for 3 days, days 9-11 and caught a virus which meant I had to be readmitted for 5 days, within hours of being discharged on day 14. However I felt pretty much recovered by day 60 and have had 3 1/2 years of stability since. Two friends had immediate severe reactions to the melphalan, being unable to lift their heads without nausea or sickness. Their recoveries took longer than mine, but they too have had in excess of 3 1/2 years of just about normal life since.
Another friend had no side effects at all apart from hair loss and a level of fatigue (although the drs apparently said they’d never seen this before).
I had a phone call this week from another friend who was then on day 5 after transplant, feeling tired & with a metallic taste in his mouth, otherwise fine (although days 7-11 tend to be the worst). He said his Dr has said new prophylactic drugs are given now so patients shouldn’t have the worst of side effects any more. That doesn’t mean that all patients get a Complete Response, that is still a bit of a gamble, but some patients without a Complete Response go into an MGUS like state of stable myeloma levels,which can last many years. I hope this helps.
