Hi najmah and welcome to the forum.
I’m pleased to hear from you as there don’t seem to be many members on Isa-VRD.
I’ve experienced several side effects and most are manageable. Fatigue is ongoing for everyone on Myeloma treatment. Occasional nausea can be stopped with pills. Some days I have an unpleasant taste in my mouth and lose my sense of taste. All short lived and easily manageable. The hardest side effect for me has been muscle pain (not bone pain) but this seems to be unusual. My consultant had not come across it before. There again, I’ve always been different from everyone else and don’t forget that it’s different for everyone and most people do not experience all side effects.
My consultant has removed one of the drugs from my chemo as there are signs that might be causing the muscle inflammation. After a few weeks, when the inflammation has settled, she’ll decide whether to reintroduce the drug at a lower dose.
Whilst the pain was awful it’s now under control with morphine and I’m trying out slow release morphine patches. Watch this space.
All I can say to you, from my personal experience, is that it’s worth it. My kappa light chains have already plummeted from over 300 and are once again in the normal range. My paraproteins are now just outside the normal range. My kidneys and liver are functioning well.
It’s a very intense course of treatment and challenging but, seeing those numbers dropping at the end of each cycle is great. Naturally there has been a time when I wanted to stop, but then I looked at the numbers again and no contest.
Like many others I’m getting used to a new normal!
I have an amazing husband, supportive family and two close girlfriends. Talking to them without being judged helps a lot and I realise that I’m fortunate.
I don’t know what support you have but would say, if you do have it use it. When you are tired rest. Use any support/help available. You deserve it.
I’m 75 and if I can do it you can. I find treatment days relaxing as I get to sit and chill with a book or crosswords.
Please keep in touch if you’d like to and let me know how you get on.
I really hope this helps.
Warm regards
Jo
