Hallo Eric, I was drifting through the posts on a steroid night and found yours. I am in about the same position as yourself with results, haven’t had a SCT, and am on the 21 cycle of Revlimid ( same dose and frequency ) and Dex.
I was interested in you saying about your fatigue, I have hit a real high level of this, really tired out, falling asleep very often. This is a new level of this, the consultant didn’t seem concerned, apart from mentioning that my haemoglobin is a bit lower – 8.9, had I any evidence of blood loss?, and that they would keep an eye on it. Apart from some side effects I have had since the start of Revlimid, i.e. sweats, quite severe weakness and unsteadiness at much the same pattern as yourself. Whether I have bowel looseness is difficult to say as I have an ileostomy, but I suspect it explains the sudden variation in output from the stoma. I am hoping for a reversal of the stoma, this is something I will need to talk to the surgeon about.
What interests me, is what is due to Myeloma, and what is due to the treatment. I believe in thinking ahead, which of these it is will affect life style plans for the future.
An aside, when the register I was seeing was writing out the prescription for the Revlimid, she said, cycle 21, it’s free now, keep it up for another 200, and we’ll bankrupt the b—–ts! Not heard of the it’s free bit, has anyone else Jeff
