I really am not sure where to start, so perhaps a little background info might help!
My mum was diagnosed with multiple myeloma late last August, and it's been a nightmare roller coaster ever since. I have nothing but respect and sympathy for anyone going through what we are.
Mum had a stem cell transplant (SCT) at the start of January this year, but by March had a phone call from the hospital saying it hadn't worked. This crushed us, as obviously we had all pinned our hopes on this giving her a time of feeling as well as can be expected.
I think it was in April that she was put on to lenalidomide (Revlimid) and some steroids (I think must be dexamethasone).
Anyway, this has worked pretty well, bringing all of her results back to a normal (ish) level, so the consultant said this was a long term fix.
However, lately (last 3 weeks, I guess) she has gone rapidly down hill to the point where she cannot get out of bed most mornings without help. She is weak, lethargic, no energy and has lost no end of weight. She said she feels 'sedated' most of the time, and we are getting worried.
She is due to see her consultant a week from today. She was called in Saturday because she was anaemic and her platelets had dropped from the 180 mark down to 39. She had two lots of blood and one lot of platelets, and was expected to pick up, but today it is just as bad.
Also she keeps getting lots of blood blisters in her mouth and on her tongue and even on her fingers.
She is on 10 mg per day of Revlimid.
I guess what I am asking is, has anyone else experienced these kind of symptoms and extreme lethargy? Could it be that her dose of Revlimid is too high? I read somewhere that it is a sedative drug.
I know we will find out more next week, but the family are at our wits end
Hoping anyone can help shed some light on things, or have been through similar.
Thank you all for reading.
Richard x
