Carfilzomib- Anyone else on this treatent

Hi again The Jolly Northerner I let your post for a few days to see if it was picked up…… I did a search for Carfilxomib using the search tool and only got a few hits…… Do have a look.

As always Myeloma UK is good for information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

I had this treatment 21 months ago. It saw my paraproteins go down to 4 after having the full 18 rounds of treatment after starting at 12. It was tough at times, with fatigue and getting a number of minor infections initially. After 12 months of treatment the dose was halved - going upto the hospital once a week instead of twice. I wasn't made aware of this so kept badgering various people about the lack of appointment /times. When I spoke to the consultant she apologised saying very few people had had the full 18 rounds - not sure whether that was good or bad. Since January '24 I have been on Lenlidomide which saw the paraproteins drop to 1 until a very nice Christmas present Dec 24 when I went into remission which has continued. Learnt today that continues until at least the end of November. The KRD treatment was a tie because of the frency of the hospital visits but I consider it worth it!

Fantastic news that you have returned to remission,  its nice to hear good news.

I was in remission for four years but am back on treatment now as the beast returned.

I am on 3rd cycle of Carfilzomib, Lenolidomde, Dextamethasone etc. Paraproteins dropped to  5 after the first 2 cycles, so fingers crossed,  but on an 18month course of treatment. 

Main problems are Neuropathy,  fatigue and a horrible taste all of the time.

Dave, I wish you well and hope that your remission l lasts for a long, long time.

Very best wishes

Mike

All I can say is Congratulations,  so pleased that you're in remission,  long may it continue. 

Very best wishes 

Mike

Hi.   Thanks for updating us.     I have.  M. M.  In remission and no maintenance treatment at the moment.     Hope the remission for you continues.     Of all things and I guess others have to deal with is the neuropathy.  It can be painful.   My consultant mentioned it is a major side effect of the aggressive treatment at the beginning of.     Kevin