[ironbear62Participant]

Hi folks,joined the Multiple Myeloma club in May last year.Daratumumab is my new injection of choice now, along with Velcade and good old Dexamethasone. I’ve arrived at this point after spinal decompression surgery with vertebrae damage, radiotherapy, 6 months induction chemotherapy VTD), stem cell collection ready for a transplant, then… bl**dy covid hit and the consultant and hospital put up the shutters.

7 months of drug free Spring and Summer with no measurable paraproteins levels was a welcome bonus, but a little frustrating when you’re shielding and can’t enjoy the fruits of being cancer free for a while.
PPs are now rising slowly, so the new plan is an 8 month cycle of Daratumumab and Velcade / Dex again. Then, hopefully,finally, my first Stem Cell Transplant.

Is anyone able to help me to know what to expect from Daratumumab? I got the sudden turn-on-the-tap streaming cold, and the diarrhoea tablets have been deployed, but what are your tips, thoughts, experiences in coping both physically and mentally with this next mini marathon? Any encouragement and straight talking would be appreciated. It’s really tough.
Thanks for listening, and what a fantastic, supportive place this forum is.
Cheers
Dave

• This topic was modified 3 years, 6 months ago by  ironbear62.

[shaun3Participant]

Hi Dave,

sorry to hear tht you’ve joined the club – but welcome anyway. Afraid I’ve not had Daratumumab so can’t offer any advice on tht. But I have had an auto and, whilst it wasn’t great, I was MRD negative afterwards and have been for 18 months now. So the short term pain was worth it in my case. The stem cell wasn’t great for a couple of weeks but its amazing how quickly your body recovers. And the mind too. I know I’ve got MM but it really doesn’t affect my life right now and Im eternally optimistic; indeed, I’m convinced I’m going to live to a ripe old age. So stay strong buddy, you’ll get through this and there is light on the other side.

Sending positive vibes your way.

Take care

Shaun

[davidainsdaleParticipant]

Hi Dave

Sorry to hear that you are back on treatment but hope it goes well for you.

I had 8 cycles of DVd between November 2019 and May 2020, and am now on Cycle 7 of the monthly Darzalax maintenance. You’ll find a couple of my posts under the Treatment section of this Forum with very helpful contributions from others which may answer some of your questions. I’m now 66 but was 59 at first diagnosis.

In summary, main side effects for me were fatigue and diarrehea and I have to say that towards the end of the 8 cycles it was a real slog. Good news is that my paraproteins are below detection and all other blood counts and organ functions normal, so clearly the treatment has been effective. The neurpathy in my feet kicked in towards the end of Cycle 7 but has settled down now.

I know of a couple of others in the clinic who have had the same treatment but with quite different side effects so it just goes to show that everyone is very individual. I think the main advantage for you is that it is a 5 minute injection rather than the 5 hour drip which I had for most of my treatment.

Hope this helps.
David

[EttaParticipant]

Hi Dave welcome I have not been on here for ages but saw your post and wanted to let you know I’ve been on Daratamumab since 2018.I was diagnosed 9 years ago I was 54.
I have had a stem cell transplant and a few different drug treatments but I’ve found this one the best for now.I’m on cycle 24 now and have found it easy going. The last 2 have been changed how they are doing it no longer having to stay most of the day with the cannula in your arm, you get tablets first usual steroids wait to see how you are then it’s an injection in your tummy timed over 5 minutes then wait about an hour if you feel okay off home with 2 days steroids and cyclovier tablets up until now it’s just the usual fatigue for a day or two.
Hope all goes well for you regards Etta.

[ironbear62Participant]

Shaun, David, Etta thank you for the encouraging words.
I love and share your optimism. Reciprocating those good vibes.
David, I sympathise with you on the diarrhoea and inevitable fatigue, but it could be a hell of a lot worse I suppose.
Etta and David, The five minute injection is a massive breakthrough and it’s a cautious thumbs up from me here at the end of the first cycle.
Roll on 2021 and that SCT. I’m ready for a reboot!

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