[compass007Participant]

Hi all not been on for some time, I am on my 26th cycle of Daratumumab yes you read correct 26th….this drug has been a revelation to me I had about 6 different lines of treatment prior to the “DARA” including two transplants, nothing seem to hold the Myeloma but fingers crossed up till now the “DARA” is doing the job almost perfectly…..However I have a question to any of you Daratumumab users 1 week after my infusion my breathing becomes very laboured for about 10 days this has been happening for the last 8 to 9 cycles and you can time it like a clock my consultant thinks its the GVHD but the timing is too coincidental for me….has anyone experienced this ? would be grateful to any comments regarding this…anyway hope everyone is keeping as well as they can, I know how Myeloma can grind you down..

Les Bird

[davidainsdaleParticipant]

Hi Les

Great to hear that you have found a treatment that is working, it does seem a bit pot luck which ones work and which don’t.

Sorry I can’t offer any response to your question, but I was wondering if the Darzalex ( Daratumumab) you were having was part of the triplet combination of Darzalex, Velcade and Dexamethasone which was recently mentioned by Myeloma UK on this website as having been approved by NICE – and also how long is each cycle?

David

[loobs72Participant]

Hi. My husband is starting Daratumumab with velcade and Dex in a couple of weeks. Did you have this mix or just the Daratumumab?

Lynn

[davidainsdaleParticipant]

Hi Les and Lynn

Just wondering how you were getting on with the Darzalax + Velcade + Dexi combination?

My pps have risen to 13.4 and at my consultant appointment this week he says he wants to get me started on this second line treatment. So something to look forward to over the summer?

Any comments welcome!
David

[bubblesqueakParticipant]

Hi David

I’ve just had two cycles of Daratumumab ,dex and velcade (6 weeks) and am delighted to say that, other than peripheral neuropathy ( velcade) and sleepless nights (dex) I’ve been absolutely fine and able to lead a normal life. As have all the others that have started with
me. After three weeks my paraproteins had more than halved and I’m hoping that they will have reduced substantially again when I see the consultant next week. The first two infusions are very long but they then speed up. Still, be prepared to put the hours in at the hospital. I only had a small adverse reaction on my second infusion – a rash which cleared up with copious amounts of drugs and they continued after half an hour. No reactions at all since. Good luck with the treatment – all of us on it at the hospital are great fans as it’s a world away from my induction therapy which made me sick for seven months.

[loobs72Participant]

Hi David

My husband started the dara, Velcade and Dex combo last week. 2 very long days last week but just one day a week going forward. Too early yet to see any results on levels but minimal side effects so far. He is still working full time apart from treatment days.

Let us know how you get on and good luck

Lynn

[davidainsdaleParticipant]

Hi Bubblesqueak and Lyn

Thanks so much for your replies.

It’s good to hear that this second line treatment combination is receiving favourable comments and has a fan club already!

Hope that your paraprotein levels continue to fall.

David

[annsharpParticipant]

My husband just started Darzalex last Friday He didn’t have any bad effects on the day but has had a couple of off days since. My concern is that he is non-secretory. This really complicated his last treatment on Ixazomabib which he had for 2 years as all the blood tests looked good but obviously weren’t as good as they seemed. He can’t have an MRI scan due to a pacemaker and was very ill with an internal bleed after his last bone marrow test. When he fell and broke his femur in February it was eventually decided he should stop Ixazomabib He had to wait for a Pat scan and that’s why he’s started on Darzalex. Would be interested to hear how other people are finding it and what we should look out for in the test results

[Anonymous]

Dear Ann, I started a regimen of Daratumumab velcade and dex about a month ago and I have found it hard going a couple of days after the infusion although i have had no allergic reactions. It’s mainly sternum pain and a tight chest which seems to wear off by the end of the week. When the infusions become once a month rather once a week I am hopeful things will improve, my Macmillan nurse did say you’ll feel worse before you start to feel better.
Best wishes
Kay

[gcoulterParticipant]

Hi

Rather than add to this topic I’ve just started a new one on Daratumumab, to make it stand out for others who will have the same question.
I’d like to know what is involved as it’s a relatively new treatment regime.
I’m hoping someone on here will reply to it.

Thanks,

Graham

[helenpageukParticipant]

Hi there,
My mum has sadly relapsed for a first time and is about to receive her fifth dose of Dartumumab.
She is experiencing real soreness both to her skin and bones. Also a complete lack of energy.
I just wanted to know if anyone else had experienced any similar or the same symptoms?
I wish you all well. Helen

[annsharpParticipant]

For Helen My husband has just had his 6th dose but hasnt had soreness to skin or bones. Lack of energy/fatigue is fairly normal all the time it seems. Wish your mum well.
For Graham—hope you have found the excellent pamphlet on Dartumumab which you can download from Publications. I think it tells you most things you need to know

Ann

[gcoulterParticipant]

Ann

Thanks for the reply, I had looked for an info sheet but the only one I found seemed to be for maintenance treatment not for relapse. I’ve had a look again and found a relapse info sheet.
However it doesn’t really cover everything, but we’ve an appointment with our consultant next week where we’ll find out more, like what has to be taken at home and does this mean no second stem cell transplant.

Thanks again,

Graham

[sueharleyParticipant]

Hi Everyone,

I am possibly about to start on Daratumumab as a 4th line treatment after my light chains are rising steadily after 5 months of Ixazomib (Ninlaro), Lenalidomide (Revlimed), Dex combination. I was diagnosed in Jan 2017, had VTD conditioning before Auto SCT in Sept 2017. I did achieve a complete remission, although not at day 100, and then had self funded Revlimed (which I travelled to India to get) for a few months before relapsing in Aug 2018. I was told I was not eligible for a 2nd auto SCT as I had relapsed so quickly and my Myeloma now counted as aggressive. I was persuaded that an allo SCT was my best chance of survival, having previously been told they were hardly ever done due to the high risks involved, and we started looking for a donor. Neither of my sisters was a match. I had 4 cycles of DT-PACE as preparation for the allo SCT but was then told I had a very rare tissue type and it was unlikely that I would find a donor match. I did go into remission following the DT-PACE but by Dec 2019 my levels had risen to the point of needing to start treatemnt again. The possibility of a C-ART trial was then mentioned and this was due to start in March 2020. I was eligible for the trial so we held of treatment hoping to last until the trial start date. However, the trial was initially just deleyed until May 2020 so I started on the Ixazomib regime, but with no expectation from my consultant that it would give me very long. Since then the C-ART trial has not happened at all due to Covid 19 and I am now relapsing.

The suggestion now is to start on Daratumumab but as a mono not a triple because that is all the NHS is allowed to do under NICE guidelines. By going on Daratumumab I would definitely be excluded from the C-ART trial if it is to be up and running in the future as the trial was a randomised comparison of C-ART compared with the triple Daratumumab treatment. I am therefore not sure if to hold back on the Daratumumab in the hope of the trial but I have been told that I will not be able to have Daratumumab as 5th line treatment as it is only available for 2nd line (in the triple) and 4th line (mono). However, I am not sure that this is quite what the NICE guidlines say as it seems to say that there is no protocol for 5th line and that this is why it’s recommended for 4th line. Has anybody been on Daratumumab as 5th line?

I have also been told I wont be eligible for the trial because I will have had too many lines of treatment but this didn’t seem as definite. It feels like they are giving up on me as I am getting through the options so fast. I am still relatively young (58). fit and healthy, no kidney problems and tolerate all treatments so far really well.

Anyone got any thought on my situation? Really sorry for the long post.

In summary, anyone had Daratumumab as 5th line or later when not part of a trial?

Thanks

[millie12Participant]

I have been offered it as a triple (DVD) second line treatment or take the oral route of Lith and dexemthazone. I am in two minds whether to take DVD because of the hospital visits and the virus at the moment my doctor is swaying towards the oral treatment but as you say I dont want to miss out on DVD treatment at a later stage. Still undecided what to so for the best.

[Author]

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