>I spent the day at the Marsden yesterday and was lucky enough to meet Faith Davies who talked me through the nitty gritty of being on the Myeloma X1 trial.
I am lucky (I think) and will be having Revlimid instead of Thalidomide – if I’m right, I think it is derivitive of Thalidomide but has much better responses in patients in terms of extending the period of disease free period after a transplant.
Anyway, went in at 10am yesterday, gave more bloods as they had to do yet another pregnancy test (to check they weren’t giving lethal drugs to a baby!!) and then met with the research team. Once they’d talked us through what to do if anything goes pear shaped, it was off for a full skeletal survey. We’d finished all of this by 12.30 and whilst they’d warned us that we wouldn’t get my prescription until the results of the pregnancy test were back, we still expected to be out of there by 3ish. But, at 3pm we got told the results had only just got to the pharmacy and that we’d have to wait for at least an hour before we could pick them up. Anyway, the long and short of it was that we didn’t get out with my bag of drugs until 5pm!!!
And wow what a bag! I’ll try to attach a photo at some point but today (and it is one of the worst days!) I had to take 36 tablets. Anyway, I still feel fairly normal and the slightly dazed feel, I think is due to the fact I didn’t sleep last night.
So all good so far on day 1, but will try to update on here as often as I remember!!