Started KRD Regime

Hi Diana,

I am really sorry to read about how you are feeling at the moment. I don’t have any experience of KRD treatment unfortunately but I thought I would reply so as to bump your post up to the top to see if it catches someone’s eye. You could also try the forum on the Myeloma UK website as I know there are a lot of people on there with a lot of experience who may be able to give you some practical insight. I am hoping that you manage to get on top of the treatment side effects and start to feel better really soon.

Greg

Hi Diana

My timeline is fairly similar to yours, though my stem cell transplant was in November 2019. I remained at very low levels until my most recent blood test results, and found out 10 days ago that the Myeloma levels are elevated all over again. Previous to my stem cell transplant, and straight from diagnosis, I also was on VTD for 6 months. I start on the KRD regime next week, and am quite dreading it. I have to go onto the chemo ward to have the treatment on Wednesdays AND Thursdays, for 3 weeks, then the 4th week off and so on. Is this similar to your regime, I wondered? I have been warned of the fatigue issue. Dreading all other side effects, though I know that we all respond differently.. So sorry it's proving tough for you and suspect that I will be in the same boat  with the KRD, as from next week!

Hi Sophie

This will be my 3rd week (thurs/fri) I found the prospect quite scarey, I find the most difficult thing is the constant tiredness I sleep so much! and feel very lightheaded.except Thursdays when I have too much energy and no sleep due to the high dose of dex, 

I have been going to the chemo suite at southmead since I was diagnosed so know the staff there well they look after me well, there has been no reactions while actually having the insufusion and they tell me they haven't seen any. I just try to get through each week and am looking forward to my week off.

Goid luck, stay strong  let me know how you get on 

Diana

Hi Diana

Thanks so much for replying. It's really helpful, though of course I'm aware that everyone responds and reacts differently. Funnily enough, the profound fatigue is exactly what a friend of mine who is an oncology nurse had told me to expect - other side effects being varied and optional!! Well not REALLY optional... I had a rather toxic response to both Thalidomide and Bertozomib, & had to be taken off both, pre transplant, so I'm very much hoping that the same doesn't happen with KRD, but it might. Today I have my 2nd cataract operation, because of cataracts given to me by all the high dose dexamethazone I had to take, pre transplant. So not looking forward to going back on the Dex either, yet I know I need to do it. It's hard isn't it? I was so grateful to find someone here though, who is also on KRD, so thank you so much for responding, and I definitely will let you know how it goes. I start next Wednesday.

 Very best wishes

Sophie