Tagged: Belantamab Mafodotin
This topic contains 41 replies, has 8 voices, and was last updated by 
pedro16 5 days, 12 hours ago.
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
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
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
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
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
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
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
Unfortunate side effect of Belantamab. My husband managed one cycle ( 3 weeks) of Belantamab and Velcade before his eyes began to suffer. He can’t see to read, drive or watch tv where everything is blurred. They have postponed Belantamab and he now has one reduced dose of Velcade a week.
The opthamologist is very concerned and we get the impression that my husband is going to be taken off this treatment. Other lines of treatment will reduce his life chances.
Any help, advice or even encouragement would be very, very welcome.
Carole
Hi Carole
I have been on Belamtumab and velcade for a few months and suffered eye problems so they postponed treatment for 6 weeks each time
Just had Velcade
I believe this is a normal reaction for a about 70% of people until eyes recover
I am about to restart next week
I wouldn’t panic yet !! As that doesn’t help
Easy said I know !
I have been told that there are lots of other mono and triple therapies available even on clinical trials even if Belamtumab stops working
Keep positive
I use minims eye drops about ten times a day and a hot eye mask from Amazon
This seems to help eye recovery
David
Hi Carole.
As David has said, it’s still early days.
I’ve now completed the initial eight, three weekly cycles on the BVD treatment and one maintenance cycle, of just Belantamab Mafodotin (or Blenrep).
My initial three weekly cycles, were one with BVD and then the next, with just the Velcade and Dex’. I managed three cycles with two BVD treatments, after which I developed micro cysts on my corneas (keratopathy). As with your husband, my Blenrep was paused and I continued for the remaining five cycles with just Velcade and Dex’.
The important thing for me was my Paraprotein counts continued to drop for the remaining five cycles and were 3.1 when it finished! like your husband, my vision was initially blurred and I had dry eyes, but my they gradually improved, so that I was able to start my maintenance schedule, last Tuesday.
Appreciating your concern; when my eyes deteriorated, I asked my Consultant if my BVD treatment would stop and she said “no, as long as my counts were dropping, it would continue. If my counts rose again, then it would.”
So, I hope this offers you some hope from someone like David, who has experienced similar challenges.
Pete
Thank you both, David and Pete. That has been really helpful.
I read your messages out to G ( I’ll refer to him as G – he’s Geoff) and, believe you me, he was so reassured!
This forum is so good to be able to express one’s fears and to receive advice and empathy. I really do appreciate your help.
I am finding it so stressful caring for him and realise it will most likely get worse. I have to do all the driving now, he can’t walk more than about 50 metres, can’t read etc etc. He’s very frustrated and in pain. He stumbles a lot and knocks things over – 3 broken glasses this week! He cannot concentrate or take things in. Watching tv is a nightmare because he can’t follow anything.
Sorry to moan! This illness has put paid to any plans for retirement. We sold our home in France to pursue new activities, would you believe? Activities now mean hospital visits! I am considering putting a tent on the hospital lawn!! 😂 Got to see the funny side!
Thanks both of you
Carole
Hi Carole.
I’m pleased that I’ve been able to give you both some hope and I’m sure David will be too.
The life of a person caring for someone with an illness like Myeloma can very demanding and I’m sure that there are plenty who will sympathise with your sentiments. I know that my wife will, especially as I spent a year on crutches, waiting for my right femur to be nailed, because of progressive bone disease.
The twice weekly visits to the hospital can be demanding, but if the Blenrep is paused and you have discussions with your Consultant, things like holidays can still go ahead, if Geoff and you are able of course.
Anyway, don’t give up hope, especially as new treatments are always being discovered and approved. And finally, it’s worth seeing if there is a Myeloma UK Support Group in your area, as they are a source of useful information, as you chat with people in a similar situation.
Pete.
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