[aburke53Participant]

After 2 years, my current treatment/maintenance regime of Ninlaro + Revlimid + Dex (Dex was stoppped one year ago) has stopped working and tomorrow, if all goes well, I will be starting on Pomalidomide + Dex + Isatuximab. I’ve read up what I can but do not really know what to expect. I know about the side effects of Dex – which are not good for me. Anyone else going through this combination and can share some experience or what works/does not work for you.

[docmikeParticipant]

Hi
I have been on the above regime for a year now . It is my forth treatment but the first time I have proper tripe therapy .I was also lucky to receive it during a the short window of opportunity under the early access to medicine schemes(EaMS)
I had good response 12 down to 1.5 but I am now in the maintenance phase as it has kept at this level for the last six months
As always the steroids are the pain but you need them before the isatuximab every two weeks and although I have reduced the dose to twenty mg the day of lethargy persist.
I have had cramps inhands with thalidomide,lenalidamide and now with pomalidamide togethr with post excuse cramps in thighs
The first infusion took over three hours and I had minor respiratory symptoms before the steroid kicked in with a the last very very early mental high which was not repeated with subsequent doses . Indeed the highs with steroids have finished but not the lows but you probably know things already
The nurses tell me the infusion rate has now been speeded up after the first dose so i weigh 95kg and my aboutnfusion takes about 80 mins ; if you weigh less the infusion should take less time
I also regard myself as lucky to receive tx in O2 ward Sheffield which was still functioning during the covid crisis .
I hope that reassures to some extent .please ask further questions
Best wishes Michael Ashton

[docmikeParticipant]

Sorry some bad errors ?predictive text

[aburke53Participant]

Thanks for your response. Your experience seems similar to mine during the first weeks. This is also my 4th line of treatment. I’m not sure what you mean when you say your response is down from 12 to 1.5? I have Kappa light chain myeloma.

I have now completed Cycle 1 (4 x weekly) and whilst the time spent actually receiving the isatuximab has speeded up (I’m 70 kilos), the actual time spent in the hospital (OBS, Blood tests, Dr, treatment, pharmacy)) has increased hugely due to what I can only presume are COVID related delays. My last visit, including driving time, was a 13hrs round trip. During COVID, the last place I want to be is in a crowded hospital waiting around when I am being so careful elsewhere. I’ve also been put back on Zometa which adds another 30-60 mins to the infusion time.

Other than my usual problems with Dex (can’t sleep) I’ve not had any other noticeable worsening of any already existing side effects. Just increased pain in the lower spine, neck and rib cage – which the Dex takes away for a few days. I start Cycle 2 (every 2 weeks) next week.

[copterParticipant]

How did cycle 2 onwards go? Just started ge same regime this week

Simon

[aburke53Participant]

So far so good. I think I’m now on cycle 13. I’m tired for a few days after the isa infusion. Not helped by a long drive and a long day in the hospital. The Dex still causes insomnia for a few days.

[copterParticipant]

How about the increased pain in spine and rib cage you mentioned? Did that go ?

[aburke53Participant]

I think the neck and rib pain has improved. It definitely has not got worse. The lower back/spine is about the same. The Dex continues to reduce it for 3 or 4 days but then it comes back. I do stretching exercises everyday.

[docmikeParticipant]

dear all,
I am still on isatuximab and pomalidamide and am now into my third year of treatment (paraprotein Less than one ) last year reduced steriods .This year stopped altogether (consultant agrees no role in maintenance phase). lost alot of weight which includes muscle losss, still got cramps /tremor with pomalidamide .
so clearly my myeloma is more sensitive to isatuximab than melphelan
isatuximab is key drug in the radar trial which i would highly recommmend for newly diagnosed myeloma
best wishes michael ashton

[aburke53Participant]

Thanks for this. My experience is similar and am now into second year of treatment with paraprotein at less than one. My consultant has also said that this could be some form of “leftover” from the ISA. I’m still on Dex. I’ve, kept the weight on by eating well and exercising regularly. My Dex has stayed at 20mg weekly and have not had any discussions with the consultant about reducing it. It still gives me the pain relief for about 4/5 days so its a tradeoff with poor sleep/less pain or more sleep/more pain. So far I prefer the former. Glad to hear your doing so well, gives me more hope.

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