[icsdamParticipant]

Hi Rabbit,

Thank you.

I would really appreciate any insight and tips you may have with respect to the Dara-RVd treatment. I know everyone reacts differently but would still be interested to hear how it was for you if you were happy to share.

Many thanks,
Icsdam

[rabbitParticipant]

Hi icsdam,

Although it was at first difficult to disentangle with drug caused which side effect, I came off them one at a time so I think that I can figure it out.

Daratumumab: I am still getting this every 4 weeks (my sole chemo these days). It is a thick liquid which a nurse injects over a few minutes. It caused me semi-diarrhoea for 2 days, but the impact has spread out these days.

Revlimid = Lenalidomide: for a long time, these capsules had no side effects that impacted me day to day except a little fatigue. It did, however, reduce my platelet count which had always been low in the first place. After 2 years from the start of treatment (18 months into remission), my fatigue was getting worse (not unusual with Lenalidomide) and my platelet count was too low, so the dose was reduced for a few months then stopped.

Velcade = Bortezomib. Watch out in terms of what you eat! I wasn’t warned on this, but green tea and vitamin C in particular can stop it from working. If you take them well away from when you are injected, I am told that it avoids that issue. For me Velcade was the one that really caused me fatigue most. I was glad to get off it as soon as remission started.

Dexamethazone. You have probably had it before, but sleeplessness was the biggest issue. Also occasionally an increased appetite. In my case, although this is unusual, it damaged my eyesight. I had cataract surgery which also fixed my shortsightedness – my eyesight is the best that it has been since I was 6!

Not trying to scare you – you’ll get through it!

Regards
Rabbit

[icsdamParticipant]

Hi Rabbit,

Thank you for your very quick, detailed and honest reply.

You are right that I have had dexamethasone before and have also had bortezomib. I have modest cataracts at the moment from previous treatment so will just need to see how quickly they progress but it is good to know that cataract surgery has been a big success for you.

It is good to know that fatigue could be a problem as if it happens then I won’t worry about it and can look into ways to deal with it beforehand in preparation for it.

I hope that you remain in remission for a very long time and have a good quality of life so you can enjoy it.

Thank you again for being so responsive to my questions.

All the best,
Icsdam

[cjleedsParticipant]

Hello everyone, I have been following this thread with great interest and my story at least in terms of treatment is very similar to Rabbits. I was diagnosed in september 2023 with lambda light chain myeloma at age 70. When my free light chains were approaching 2000 and causing some kidney problems I started on DRd . My Flc fell to the low 20’s but I have had several problems over the years . My electrolytes became severely deranged at one point causing the lenalidomide to be reduced and stopped for a couple of months. I started on 40 mg of lenalidomide subsequently reduced to 20 ,10 ,stopped restarted on 2.5 and I am now on 5mg . Along with 4weekly dara injections.
I developed cataracts and my dexamethasone was stopped. I had cataract surgery and like Rabbit my vision is the best it has been for years.
During treatment i’ve had severe diarrhoea which is now mainly controlled with daily colestyramine as it was thought to be due to bile acid malabsorption.I still occasionally get diarrhoea but it is easily treated with loperamide.
I have the usual fatigue but apart from that I am considered to be. in remission.
I am assuming I will go onto BVD or BPD treatment next when my myeloma regresses. By the way I noticed that BVd is mentioned on here but I’m sure I have seen evidence that BPd gives better results. Any thoughts?
Regards to all
colin

[rabbitParticipant]

Hi cjleeds,

It feels strange to be mentioned in posts 😀.

Anyway, I asked Chat-GPT whether BVd or BPd is better. Here is the response:

“BPd is often stronger for: Patients previously exposed to many therapies; lenalidomide-resistant disease; deeper/longer responses in some relapsed settings.
Main downside: More low blood counts, infection risk, fatigue.

BVd is often stronger for: Faster disease control; patients who still respond to proteasome inhibitors; sometimes easier to tolerate initially. Main downside: Peripheral neuropathy from bortezomib.

Here’s the practical comparison:

Important points about each:
BPD (Belantamab + Pomalidomide + Dex)
Pomalidomide is an immunomodulatory drug often effective after lenalidomide stops working.
Commonly viewed as a very active regimen in relapsed/refractory myeloma.
Often preferred when:
disease is resistant to lenalidomide,
patient previously benefited from pomalidomide-class drugs,
neuropathy makes bortezomib less attractive.
BVD (Belantamab + Bortezomib + Dex)
Bortezomib can reduce myeloma burden quickly.
Sometimes favored if:
rapid control is needed,
the patient previously responded well to proteasome inhibitors,
blood counts are already fragile and pomalidomide may be harder to tolerate.
Neuropathy can become limiting.

One major issue with both
Because they include Belantamab mafodotin, both regimens require close eye monitoring due to corneal toxicity/vision changes. Eye exams are a standard part of treatment.
In current practice
Many myeloma specialists consider BPD potentially more durable, especially in heavily pretreated or lenalidomide-refractory patients, while BVD may produce faster cytoreduction.
The “better” regimen often depends on:
prior exposure to:
Lenalidomide
Bortezomib
Pomalidomide
whether the myeloma is refractory to any of them, kidney function, existing neuropathy, blood counts,and cytogenetic risk.”

Regards
Rabbit

[cjleedsParticipant]

Hello Rabbit,
thank you for such a comprehensive reply.
Much to think about when the time comes. In the end I will take the advice of the team at St James’s hospital leeds . However it’s always good to have an insight into the treatment available . Who knows, when the time comes for a new treatment regime for me it may not be blenrep but maybe car-t or something else.
Thank you again for the excellent summary of BVD v BPD
colin

[rabbitParticipant]

Hi cjleeds,

No problem: I was simply quoting one of our new AI overlords 😀.

However, I will tell you my plan, although it is subject to change, as new clinical trials and treatments come out, and depending on what is most suitable for me at the time.

For me, the belantamab side effects relating to eyesight are offputing. I had, like you, the experience of eyesight deterioration from Dexamethazone already. Once bitten, twice shy, especially as much of my semi-retirement involves reading, looking at nature, watching videos etc. I even use my eyes on the little work that I do these days!

The MajesTEC-3 trial showed that Teclistamab and Daratumumab are a very effective combo. It can come with its own side effects, such as cytokine release syndrome (CRS) and neurotoxicity and they could be tough going in themselves. CRS would be likely to be for just the first few days though. The biggie for me might be infection risk, and I have heard of cases where reduced immunity goes on for years. However, I have done lots of holidays over the last couple of years, so if I have to tuck myself away with lots of books and Youtube in my garden, then so be it.

First, though, I have to hold out for Teclistamab and Dara to be a second line treatment instead of fourth line and later. The MajesTEC-3 results were so good that maybe that will come sometime soon. I can hope!

Regards
Rabbit

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