[goffy1957Participant]

Hi every one
I am on the trial for Elranatamab and have have had the first 3 step up doses and one full dose so far
I did have a fever on the second and they gave me tocsilsumab and that fixed it pretty quick
My main reactions are very tired and the whole of my skin on hands and feet peeled off in sheets
The rest of my body is flaky and a bit itchy
Skin feels like the after affects of bad sunburn
I use QV cream and that helps and epimax for hands and feet peeled off
Next dose on 17th but I have a whole day of blood tests every half hour next week
Have to wait and see if I get any more reactions
Such fun this bloody disease
Take care

[goffy1957Participant]

Rabbit
Please accept my thanks
I really appreciate your advice and knowledge
It’s as lonely journey full of anxiety and waiting for the unknown
David

[goffy1957Participant]

Rabbit many thanks
That’s my concern ! The side affects,but in saying that the alternative of not being given an option isn’t worth considering
Although my light chains have increased to 1000 again I feel perfectly fit, though I know that won’t last !
Not sure how quickly they multiply ?
Any idea of the data regarding percentages of patients having serious CRS and neurotoxicity ??
I can’t find any
Regards
David

[goffy1957Participant]

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

[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 !!

[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

[goffy1957Participant]

Thanks for your reply Rabbit
Very helpful
Goffy

[goffy1957Participant]

Thank you
David

[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

[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

[goffy1957Participant]

Hi guys
Just read your posts
I was on Daratumumab from April after being diagnosed with light chain myeloma No para protein
This worked great to start with
My numbers were 28000 then
After 5 months the Dara stopped working and numbers increased to 5000 from 1600
They started me on Belantumab and dex with Velcade for one cycle but now only velcade weekly because of eyes
I honestly can’t tell any difference but have to abide by what they prescribe
My numbers last week were 85 so fingers crossed
They have said BVD will start again once eyes go to grade 1 again
No side affects so far except the dex makes me like a Duracell bunny on treatment day
So I take a Nytol which eventually helps me sleep
Best wishes keep going
D

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