[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

[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.

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