Tolerating a new chemo treatment

Hi.    I am 140 days post stem cell transplant and currently on Lelonamide   I had 4 cycles of.  D. V T B before stem cell harvesting       Which was    Daratumbaba    Velcade   Thalidomide and Dexamethasone ( steroids)   Each cycle 24 days  then a short gap then next cycle    I found it very tolerable   Dara injections were only once per month with dexa on the day of injection and the day after        This combo always made me feel stronger!       Hope this helps a bit    Kevin 

Hi, I was on DBD for 10 months pre stem cell transplant and post SCT.  I tolerated it brilliantly,  the only side effect is that it has left me with neuropathy in both feet which is quite hard to deal with  but other than that I think you will be fine. I didn't have nausea,  fatigue,  diarrhea or any of the other side effects.  We are always here to offer advice. Hope you get on OK.  Take care.

Hi,

I was on DBD for 6 months with a break at 4 months for stem cell harvesting. I have not had a stem cell transplant yet, though. When I went into remission, the Bortezomib was stopped as it was no longer necessary. That was over a year ago and I am still on Lenalidomide.

In terms of side effects, the main one for me was fatigue. I had some constipation, but it was tolerable and I had been prescribed medicine for that in advance, which was effective. Since going into remission, both side effects reduced, although it took a few months.

Hi, my story is a little different but will hopefully reassure you somewhat (read to end!). I was diagnosed in 2019. After conditioning treatment my SCT was postponed in 2020 due to Covid. I was put on Lenalidomide but I developed a nasty reaction - it caused permanent scarring of one lung. The SCT went ahead in mid 2021 but it wasn’t entirely successful. I did get a period of 8-10 months stability but didn’t achieve anything like full remission. I started DBD treatment 2 years ago. My main side effects were fatigue and constipation although this alleviated after 6 months when the Velcade was discontinued. The last 18 months I’ve been on what they call Dara maintenance and I get one infusion every 4 weeks (plus Dexa) and it’s been great - barely a trace of myeloma and stable so far. So, it’s been the treatment that works best for me!

Hi All,  thanks for your replies, they been a help so I can face my Haematologist with a lot more confidence prior to her issueing the new chemo.  Fingers crossed for when the first injection takes place at end of this month. Regards