[toffee66Participant]

I’ve just had cycle 20 after my first relapse. I am now in four-weekly Daratumumab maintenance post SCT (September 2021) after initial DVD pre transplant. I am in Complete Remission for both my Myeloma and AL Amyloidosis with light chains, paraprotein, Troponin and NT-ProBNP all ‘normal’. Side effects are not bad at all. Mild neuropathy. A couple of days of high fatigue and cold-like symptoms after injection. Obviously it does not work for everyone but it has been a welcome addition to the treatment range.

The continuing development of new MABs, Bi-MABs, CAR-T & other therapies offers hope to all as like so many I am being treated with a drug that was not even officially launched when I was first diagnosed. Myeloma UK do a great job supporting drug development (clinician support, clinical trial promotion etc.) & advocating for drug approvals so fingers crossed that the future continues to get brighter!

[anne-marieParticipant]

Hi all , my 84 year old Dad was diagnosed at the end of November 2018 with Myeloma , he had 3 months of CTD starting in the December which put him into remission. For the last 3 years his only treatment has been Zometa infusions which started as monthly and are now every 3 months . This week he’s started DVD treatment , he had his first treatment on Monday and I’m nervous as to how he will cope with it as he’s no spring chicken .

[kh0305Participant]

Hi Anne-Marie,
Sorry to hear your dad’s having to go back on to treatment again. I’m a forum volunteer and my dad also has MM. He is also currently going through his first relapse. He is a bit younger that your dad (72) but its such a worry isn’t it?
I’ve heard so many good things about DVd with many people tolerating it really well. MM is such an individual disease though it varies between people and unfortunately dad didn’t get on with it at all with really bad side effects and it didn’t work for him. Please don’t let this get you down though because I know of so many that responded well to it. The main thing is that if he does suffer any side effects, flag them to his consultancy team as there may well be things they can do to help reduce them and dad’s team always say to us don’t suffer in silence!
Dad’s now on IRD and has far fewer and much milder side effects and is responding well – so many treatment options available now which is really positive, so even if the DVd doesn’t suit your dad there are other things to try.
Good luck with it and I hope your dad is feeling much better soon x

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