[dazzParticipant]

Hi all.
This is an ask for anyone that has undergone treatment with this drug.
I am probably going to be having it v soon as 5th line treatment. I believe it’s quite new and was wondering if anyone out there has had it and if so what their experience was like with it.

Thanks
Daz

[rabbitParticipant]

Hi Daz,

I am on a few of these forums, one of which is US based: https://www.smartpatients.com/conversations

There are posts there about patients’ experiences with Isatuximab = Sarclisa. Please see:
https://www.smartpatients.com/search?q=ISATUXIMAB
https://www.smartpatients.com/search?q=Sarclisa

All the best with Isatuximab. Please let us know how you get on with it.

Regards
Rabbit

[gcParticipant]

Hi Dazz
I am on the Radar XV trial. I am high risk so on that pathway. SCT did not give full remission but it did help.
I was then put on maintenance treatment of 10mg lenalidomide for 21 days and a week off and isatixamub via a drip.
I was given this weekly for 12 weeks then reduced to fortnightly. In November this was reduced again to monthly.
My bloods have remained stable and myeloma markers have also been stable. My back gives me gyp but that’s a separate issue.
I had no significant symptoms other than
The day after treatment I get a bad headache
I sometimes get flushes- bit like the menopause days!
I do have a day- usually 2nd after treatment where I am like a rag doll.
All of the above have been easy to cope with and worth it.
Now, on monthly there was a slight increase in symptoms but the rate of the infusion had been increased. My team adjusted it and so far so good. Not having to travel to hospital so frequently has been great- can plan a wee bit further ahead.
Everyone is different but I hope some of this helps.

[dazzParticipant]

Hi
Thx for your reply. It’s a treatment I’m starting soon and haven’t heard much about it so any info helps thx.
Daz

[dazzParticipant]

Hi all,
As promised I said I would keep updated on this new treatment I’ve started. Isatuximab.
All the consultants and myloma/hematology team seem really excited about it. I had to have a dose of 3 courses over 6/7 days at certain intervals and stay in hosp to monitor reactions. I had the 1st dose Mon was due nxt Thurs but obb’s just went crazy nxt day when it kicked in. Had to put my follow up dose 2days later than planned until I was under control which was worrying as they’ve only got a 2wk window to get them all in or start again. I’m still waiting for reaction from that but hope things are calmer. This is 5th line treatment for me so I’m hoping it works….side affects have been so much less than anything else I’ve incurred thgh so if this has a poss affect as they hope it will be great. I will keep u updated as I learn.
Dazz

[dazzParticipant]

Just thght I keep you updated as I posted the 2nd thread not long after they gave me the 2nd dose chemo.
I was expecting perhaps high temps and low BP like I got from the 1st dose but my god, didn’t I get a really bad crs reaction to it. My whole body went into convulsions and the pain thrgh my bones was undescribable. I was writhing for 6 hrs and the dr’s hadn’t seen it b4 either so were at a lose of what to do and dosed me fully with morphine but that didn’t touch it! I just had to ride the wave screaming in pain until the effects wore off basically.
On a plus side, they took blood’s the nxt day and they have said that all that pain showed it was working as my lite chains had gone down from 1000 to 15 which is amazing. Just awaiting my blood levels to come back up now so I can have the final dose but they don’t expect the same reaction…fings crossed.
Daz

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