[boisvertParticipant]

Hi Pete,
Did you ask your consultant about the gel eye masks?
Regards
Carole

[boisvertParticipant]

Hi folks,
A question to those being treated with Belantamab. Were you given cold eye compresses whist the drug was being administered? We discovered on Friday that this was recommended in the protocols but my husband was not provided with cold compresses and now has eye issues. I would be grateful for any comments.
We are in the Mid Yorkshire hospitals but we’re previously on a trial administered by Leeds hospitals.
Carole

[boisvertParticipant]

Hi everyone,
Have those of you who have been treated with Belantamab been given cold eye presses during the administration of the drug?
Apparently they are used to diffuse the effects of the drug on the eyes.
My husband was not given the cold compresses and has quite significant eye problems now.
Apparently, the use of these is recommended in the protocols.
This was picked up by our practitioner via someone being treated in this area – we are in the Mid Yorkshire Hospitals area overseen, I believe, by the Leeds area team.
Hope you can help.
Carole

[boisvertParticipant]

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

[boisvertParticipant]

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

[boisvertParticipant]

Hi everyone,

I just want to add to what I have already said and would appreciate some help.

My husband managed one 3 week cycle of Belantamab when things started to deteriorate.
He began to have problems with his eyes. He cannot read, drive or watch television which is on top of all the other issues with myeloma.

The opthamologist is very concerned and they have had to halt the Belantamab so is now only having a reduced dose of Velcade once a week.
We are beginning to feel that we are not receiving the attention of the consultant and we are being seen by an advanced nurse practitioner in training.
I feel like he is being seen as a lost cause.

Any comments or advice would be very welcome – or even some support!
Thanks
Carole

[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

[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.

[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]

Hi everyone.
I am new to this forum and have been interested by your conversation.
Having been on a trial drug plus lenalidamide for 4 years, the myeloma has started to rise. Hence I have been given literature to read on Velcade and Belantamab with the view to starting 2nd line treatment. Having been on a trial for 4 years with a specific trial nurse helping every step of the way, I feel very much on my own and it’s scary. Need some friends who understand.

[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!

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