[goffy1957Participant]

Morning every one
I was diagnosed with MM in march this year and my light chains were 28000
Since then I have had 6 cycles of Dara with linalidomide and Dex
This has been very successful and light chains reduced to 1600
Yesterday at the consultants review they told me it wasn’t working any more so treatment has been stopped
A bit of a shocker yesterday!!!
I was told they are giving me an eye test and starting Belentamab and Velcade in a couple of weeks
Are any others on here receiving this treatment and how is that going plus does it have any nasty side affects
I’m in a bit of a head spin at the moment so any advice would be a great help
Thanks Guys
David

[rabbitParticipant]

Hi David, welcome to the forum.

Myeloma UK has pages on specific treatments.

Belantamab malofodin: https://www.myeloma.org.uk/library/ask-the-nurse-belantamab-mafodotin/

Bortezomib (brand name Velcade):

Bortezomib (Velcade®) Treatment Guide

However, don’t be too shocked at all the side effects mentioned: no one gets all of them!

I have had Bortezomib (you imply that you haven’t had it in your treatment so far – that is unusual). The main thing within your control is to be very cautious with taking supplements and vitamins. In particular, don’t take green tea extract or vitamin C supplements: they can stop the Bortezomib from working.

I haven’t had Belantamab yet, but I could well get it when my remission ends. Therefore I have read up on it. The main thing that it effects is eyesight (hence the eye test that you have already had). The eye side effects almost always reverse after a break in treatment or a dose reduction.

I hope that this is some help.

Regards
Rabbit

• This reply was modified 6 months, 3 weeks ago by  rabbit.
• This reply was modified 6 months, 3 weeks ago by  rabbit.

[boisvertParticipant]

I am in a similar situation but note that you have not had any replies. Sad when we need help. I have just been taken off first line treatment after 4 years. I have been given notes on Velcade andBelantamab to read after Christmas and decide if I want to go ahead. I too would like to hear more about it from those who are on the same treatment. No CST as too old!

[wyloParticipant]

I’m in a similar situation, though it’s disheartening that there haven’t been any replies—especially when we’re looking for support. After four years, I’ve just been taken off my first-line treatment. I’ve been given information on Velcade and Belantamab to read over Christmas and will need to decide whether to proceed. Like you, I’d really appreciate hearing from others who are on the same treatment. No CST for me either, as I’m considered too old.

[goffy1957Participant]

Hi
Just a quick reply to your post
I was diagnosed in march last year with light chain myeloma and no para protein
I was started on Daratumumab lenalidomide and dex one week later after that awful bone marrow biopsy
My light chains were at 28000
Apart from 4 days of chronic toilet issues and losing 8 pounds in weight the side affects were mild
Sleeping on the day of taking dex is still an issue but helped by Nytol before bed
This continued for almost six months and eventually the numbers went to 1600
Then the great hand in the sky said too easy mate and the Dara stopped working and numbers shot back to 5000
I’m 74 years old
Straight away I was put on Belamtumab and Velcade ewith dex in the day of IV
NO side affects to speak of but I do take one ceterizine (anti histamine) to combat rashes caused by co trimoxazole
I have only had one cycle so far because of mild eye problems but continue weekly Velcade
My numbers at the start of December were 56
So something is happening, and hopefully back to the full medication later this month.
One never knows as it is different for everyone but hey ho I’m still the right side of the green stuff
Keep positive , keep moving and keep busy
All the best David

[mayflyParticipant]

I had my first belantamab Mafodotin treatment on 7/12/25 alongside bortezomib and 20 mg dexamethasone. I’d been on daratumabab dex and lenelidomide since diagnosed in may 2024. That line of treatment stopped working in July 25 and my paraproteins began to rise and increased bone involvement. It took until 7/11/25 for hospital to organise a contract with a company called Apodi to organise the eye tests through some specsavers branches. I have only had one treatment of belantamab as my eyes became quite gritty and there was some damage on the surface of the eye. (This is apparently reversible)
I have continued with weekly dex and bortezomib and my paraproteins are continuing to come down.
I see the consultant every 3 weeks and they reassure me that it will stay in my system and continue to work even if I only have it every few months which is good news as far as I’m concerned as apart from my eyes side effects are minimal. The only issue is the organising of eye tests by Apodi who leave it until 2/3 days before consultant visit to organise eye tests which is annoying trying to keep whole day free just in case of an appointment. (I am not allowed to make the appointment myself!)
I have asked the hospital to make a complaint but apparently this is the only company that can organise the tests on behalf of the drug company. It would be really interesting to know if anyone else has to go through this company.

[goffy1957Participant]

Looks like we’re in a very similar position Mayfly
Apode are actually very good if you call them
A very nice helpful lady can sort your appointments
Their number is 01628 506801
Hope that helps
David

[boisvertParticipant]

All that information is so useful.
Having been on a clinical trial for 4 years, I am feeling rather abandoned at the moment so am glad to be in this forum thread.Whilst on the trial, I have had a research nurse with me at every appointment and she has got treatment for me for other conditions very promptly. Now that she has finished, I feel thrown into the normal NHS and am not sure how this will be and ifI will get another nurse to consult. At my last appointment with the consultant on 22 December, he said he would see me in a month but I have heard nothing. On the trial, I saw the consultant and my next appointment was ready within 48 hours. It’s a bit scary,I have to say.

[boisvertParticipant]

My name is Carole and I am the wife of “ boisvert”. I persuaded him to join this forum but he is struggling with treatment so I hope you don’t mind if I keep in these conversations on his behalf.
He started his second line of treatment two weeks ago – 2 week cycles, then a week off. He has Belantamab and Velcade on day 1, Velcade on days 4, 8 and 11. Then the week off. He had the eye test before the start and has drops 4 times a day.
He struggles a little with brain fog and sometimes feels unbalanced. Also he has no taste and little sense of smell.
How are you all faring with Belantamab?
Where has David gone?
Someone asked which trial he was on before for four years. It was Ixazombid and Lenalidamide which worked for 4 years but he had kidney problems so they halved his dose of Lenalidamide. That his when his paraproteins started to rise and a new line was started.

[goffy1957Participant]

Hi Carole
Sorry to hear your husband isn’t feeling so good
I can only speak from my experience
and not a medical expert
I have just completed my 8 th cycle of belamtumab every 4 weeks with velcade weekly In between
I do have Dex on the day of treatment and normal antibiotics
The eye problems are common so I suggest he uses the drops at least 8/10 times a day. That improved mine
Also try a heat mask to soften the oils around the eyes ( Amazon)
Brain fog is normal and mine improved with each cycle ? Give it time.
I am having 3 monthly zoltronic acid bone strengthening which causes some stomach pain and aching in the hips and back for a few days but that subsides
My main advice is although at times all this gets you feeling down have a mindset to keep fighting and you will improve
David

[boisvertParticipant]

Thanks for all the advice, David.
G has eye drops from the ophthalmologist at the hospital which he uses 4 times a day ( Celluvisc). He has Hydroclore from the optician which he has had for years. He will use the heated eye ask now so thanks for suggesting that. Which eyedrops do you use daily?
Please keep in touch as it helps me to cope to have support and I am sure it will help him to be in contact with people who are going through the same process.
Carole

[goffy1957Participant]

Hi Carole
The eye drops are called Minims artificial tears
The hospital give me 8 boxes every cycle
you can ask for them as I believe GSK who make Belentamab pay for this him the patient support program
I always use them last thing before sleep
lol if that’s possible !!

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