[susieParticipant]

I am shortly due to start yet another treatment as my last one finely failed.
I’m starting istuximab together with pomalidomide and Dex. The istuximab is given by infusion and I’ve always tried to avoid IV treatment but seems I have no choice this time.

Has anyone had this treatment, and how have they got on with it. Then maybe I can stop worrying ?

Best wishes to all

susie

[docmikeParticipant]

Dear Susie .
I started on isatuximab, poma and dex june 2020 under the early accces to medicine scheme and was the first person in sheffield to receive this regime . It is my fourth tx but my first proper triple regime.
I am still in remission at less than 1gm/l and am now in the maintenance phase and hence phasing out the dex hallelujah!!! (better response to my fourth covid jab and possibly makes the pomalidamide more effective ???? and thursdays are much better (TX on Tuesday))
The infusion only takes 90 minutes except in the first few infusions when you do nreed the dex ,antihistamine and paracetamol before each infusion. I had transient nasal congestion and chest felt a ittle tight before the dex kicked in and I felt suddenly optimistic which was weird I know (beginning of a steroid high perhaps??)
I have my usual muscle cramps but I had that with thalidomide and lenalidomide .
So I hope you find that reassuring .
I am a patient representaive on the radar trial for newly diagnosed myeloma patients which involves isatuximab big time and does not involve thalidomide !!
Best wishes Michael

[susieParticipant]

Hi Michael

Thank you so much for your reply.

I’ve had MM since 2004, you’d think after all this time I wouldn’t get in a state when starting a new treatment. I’ve been able to avoid IV drugs so far, i think one gets more intensive side affects following IV treatment. I’ve been told this will be my last treatment!!!. This I find rather surprising considering all the drugs available for our disease.

With Best Wishes
susie

[docmikeParticipant]

Dear Susie ,
After my first infusion I had no side effects from the iv therapy .
Like me when I relapse hopefully in a few years time, both you and I will have to look at the clinical trial finder on myeloma uk to find out where suitable tx is available elsewhere . Cart t cell etc ,bite , bcma targeted therapy .
I have always known that sheffield does not partake in every trial and that i would eventaully have to travel to hopefully be accepted on a suitable trial elsewhere . I Found out about the early access scheme from myeloma uk not my consultant . (There are trials for multi relapsed patients )
Bets wishes Michael

[Author]

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