Hi Squirrel
Answering your last two posts; Doctor happy with my bloods she said that my para proteins had gone from 21 whatever its measured in, at the beginning of treatment, down to a number that was insignificant so we were pleased with that, and all the other important numbers were down to a level that they are happy to continue with the stem cell transplant, Just waiting for a date for the stem cell harvest and subsequent transplant. As I’m genetically classed as high risk I think this will be sooner rather than later.
We asked questions at every review and when we saw the specialist nurse while having the treatment so don’t let that worry you. I did find that whatever side effects cropped up most would go once treatment stopped but always ask the questions just in case drugs need to be changed or dosage altered.
I seemed to tolerate the drugs more than what I’ve read and heard, I did however have the same as you, cold nose and my feet felt cold to me but not to touch, some other strange side effects as well, three or four days after the infusion and injection, my skin felt sore to touch, like when you have flu, it would last a day or so then disappear, I also had one ear that wouldn’t pop, similar to when you on a plane, really weird feeling, that disappeared when they changed my MST to a capsule. I also had a reaction to the deltaparin, it was ok for the first six – eight weeks then I developed a horrible rash on my stomach and legs where we injected, I stopped that and changed to apixaban tablets and the rash settled down.
When I first had the Isatuximab, I had the symptoms of anaphylaxis, tingling lips and mouth, blocked nose and short of breath, treatment was paused for an hour while I had more steroids and intravenous antihistamine, after that I was fine.
After a while I got to understand what to expect as each week the same things occurred at a similar time
