[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 .

[kh0305Moderator]

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

[davidainsdaleParticipant]

Hi Everyone

It’s been a while since I last posted so thought it was a good time to provide an update on my monthly Darzalax maintenance treatment. Now on Cycle 35 of monthly maintenance following 2nd line treatment of DVd in 2019.

I am keeping well with bloods, pps and organ functions all normal, so very pleased at how effective the DVd and monthly maintenance is. So that’s my Xmas present all sorted.

Neuropathy continues to improve and is there just in the background, not really a problem or noticeable. Tired with the dexi for a couple of days but very predictable.

I’ve been keeping an expensive bottle of red wine to one side as a treat, so have this to look forward to!

Hope this helps.
David

[mmsuffrahParticipant]

David, hope you enjoyed popping the cork?!

I was undergoing 2nd Allo SCT over the holiday period following relapse 4 years post 1st Allo SCT. I was put on DVD for six months prior and the numbers dropped quite rapidly for me with few side effects (tho’ now I do miss my weekly steroid buzz). The question once I had opted for 2nd SCT therefore was whether to initiate maintenance Daratumumab thereafter or keep it for 3rd line treatment.

There being little data for the consultants to fall back on, I have taken the gamble of trying long term to suppress the myeloma amongst the new stem cells with the monthly jab and worrying about choice of drugs when it returns ….. hopefully in the distant future!

2nd SCT was smoother than 1st using nearby charity cottage initially and thankfully a speedier engraftment. Just a middle period of 2 days brain fog and grumpiness then plain sailing. Keep smiling!

[davidainsdaleParticipant]

Hello mmsuffrah

Thanks for your post. Glad to hear that your 2nd allo SCT has gone well, it can feel like a bit of a slog at times so it’s nice to have a little treat now and again. Hope that you have a good long period of remission.

I was offered a 2nd SCT at 2nd relapse but for various reasons decided against it. One reason, as you point out in your case, there is very little data or research on the effectiveness of the various options. In hindsight this was the right decision for me because the monthly dara maintenance has proved very effective, now on Cycle 36 of maintenance, pps undetectable and doing well. I still have the option of a 2nd SCT at 3rd relapse if needed.

I have heard that the treatment regime following DVd+SCT has changed recently and now it is a few months of dara consolidation' rather than continued monthly maintenance’. So a drug free period after transplant would have been an advantage.

Interested to hear that you have had the dexi` buzz’. I’m still on dexi for two days each month and have never had the highs, just lows of sleepless nights and fatigue for a few days afterwards. Just shows how we all respond differently.

Hope this helps.

David

[mmsuffrahParticipant]

David,

Thanks for speedy reply – consolidation was not mentioned so will investigate this week. It might fit in with NICE not having approved maintenance prog and therefore delaying recording of SCT?! Crazy ….. but if it results in at least having Dara for 3rd line perhaps not a bad thing.

Will keep you updated.

[mmsuffrahParticipant]

David,

Explained to me today as consolidation Daratumumab post first STC, then tablets Lenalidomide. Post 2nd STC monthly Daratumumab until it no longer has benefit.

[thejollynorthernerParticipant]

Hi David
Another David here.
I was diagnosed in June last year.
July, I started on DVD from America.
5 months of treatment, then down to Nottingham for the harvesting of my cells that took 3 days and only enough for one transplant. Due to the fact that I was in remission I postponed the SCT to see how long my remission would last to which the consultant there agreed but I can tell my consultant back home was not chuffed about it.
Several weeks later they restarted the Daratumamab Velcade and Dexamethazone and Thalidomide etc which I finished last week and have whittled myself off the Morphine from 60mgs twice daily.
Now I have to attend my hospital for bone strengthening injections.
I travelled 83 miles in a round trip to.my hospital twice weekly for 5 months only to be told about the Chemo Bus had always been available in two locations a lot nearer to me.
I have had a lot of side effects including Arterial Flutter which i was admitted into hospital for 3 days.
On the whole I feel tons better but I do experience pain in my right side but I think this is muscular.
I have the Myloma in my spine, pelvis, ribs and hip.
Cheers Dave

[davidainsdaleParticipant]

Hi Dave

Thanks for sharing your experiences of the DVd-T treatment. Good to hear that treatment has been succesful and you are improving. Good luck with you future treatment.

David

[ducladyParticipant]

Hi all
I joined the forum in 2017 at diagnosis I have looked in but not posted since then

I had my first relapse in 2021 and started DVD heading to 2nd SCT after 8 cycles my PP and light chains had come down and plateaued had SCT in 2022 and I am on Dara maintenance with 3 monthly Zometa (I have bone disease)

I have to say I have tolerated dara very well with little side affects, I had more problem with velcade and neurotoxicity and Dex
Both of which were lowered in the first 8 cycles.
I have responded well better than my first transplant which left me with PP4/5 light chains 66

Im now PP and lightchains less than 2 and maintaining that with dara the best results in 6 years considering at the beginning I wasn’t in a good place
I will continue with dara until my next relapse

Dara wasn’t available in 2017

I had VDT to start and was refractory to it and then onto ESHAP to get me to my first SCT

I’m grateful for the advances in treatment and the use of Dara

Next I could be looking at Car T cell therapy

[davidainsdaleParticipant]

Hi All

It’s been quite a while since my last post on this forum so I thought it would be a good time to give an update. ( First diagnosed with myeloma start of 2013 ).

Now on Cycle 44 of Daratumumab monthly maintenance. Bloods, paraproteins, organ function all normal. I’m doing well, just the usual few days of dexi fatigue after treatment, Neuropathy continues to improve slowly and doesn’t really affect quality of life. Treatment is proving very effective. Second set of 24 cycles of Zometa completed – hurrah!

At my last monthly appointment I asked if they would do a glucose/diabetes baseline check to save me hanging on the phone for a GP appointment. I believe that patients on long term dexi may be at risk of developing diabetes. Results came back normal so it was useful to have a baseline check.

As ever, hope this helps.
David

[derbyshirelassParticipant]

Hello David,
Many thanks for the positive update,you are an inspiration . My hubby is on cycle 21 of Daratumumab monthly treatment,and so far so good and this gives us great hope for the future,we have been following you from the start of the DVD treatment. So just wanted to say a BIG thank you for posting,
The very best wishes
Ann

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