[jomjo75Participant]

Hi everyone

I was diagnosed with Myeloma in October last year and began treatment in January 2026.
I am receiving one of the new treatments, Isa-VRD. It consists of six 4-week cycles, back to back, so is intense. I’m struggling with some of the side effects and wonder if anyone else is receiving this treatment?
The good news is that my serum light chains and paraproteins have plummeted so it’s doing what it’s supposed to.
Isa-VRD consists of Isatuximab, Bortezomib (Velcade) Dexamethasone and Lenalidomide.
Owing to my age I won’t be having SCT.

[rabbitParticipant]

Hi and welcome to the forum.

As you say yourself, Isa-VRd is relatively new, so not many people have had it yet.

I had DVRd in 2023, with D = Daratumumab, which is similar to Isatuximab (both are immunotherapy targetting the CD38 antigen in myeloma cells). I am still in remission.

What side effects are you experiencing?

Regards
Rabbit

[martyParticipant]

Hello I am a newbie. I was diagnosed with MM in February 2025. I was put on the Radar trial of ISA-VRD. I had the initial intensive treatment but was lucky enough to only suffer fatigue. I have subsequently had a stem cell transplant and was MRD – after 100days. I am now on maintenance treatment and have ISA every 2 weeks. I am still in remission.

[jomjo75Participant]

That offers me hope. Thank you.

[najmahParticipant]

Hi jomjo75. I’ve just found your post and was interested in reading it as I’ve just been diagnosed recently and I’m due to start the same treatment as you on 28th April. How are you finding the side effects now youve been on the regime for a few months? I’m hoping they are not too bad for you but I expect everyone has different reactions.
I hope you are doing well.

[jomjo75Participant]

Hi najmah and welcome to the forum.
I’m pleased to hear from you as there don’t seem to be many members on Isa-VRD.

I’ve experienced several side effects and most are manageable. Fatigue is ongoing for everyone on Myeloma treatment. Occasional nausea can be stopped with pills. Some days I have an unpleasant taste in my mouth and lose my sense of taste. All short lived and easily manageable. The hardest side effect for me has been muscle pain (not bone pain) but this seems to be unusual. My consultant had not come across it before. There again, I’ve always been different from everyone else and don’t forget that it’s different for everyone and most people do not experience all side effects.
My consultant has removed one of the drugs from my chemo as there are signs that might be causing the muscle inflammation. After a few weeks, when the inflammation has settled, she’ll decide whether to reintroduce the drug at a lower dose.

Whilst the pain was awful it’s now under control with morphine and I’m trying out slow release morphine patches. Watch this space.

All I can say to you, from my personal experience, is that it’s worth it. My kappa light chains have already plummeted from over 300 and are once again in the normal range. My paraproteins are now just outside the normal range. My kidneys and liver are functioning well.

It’s a very intense course of treatment and challenging but, seeing those numbers dropping at the end of each cycle is great. Naturally there has been a time when I wanted to stop, but then I looked at the numbers again and no contest.

Like many others I’m getting used to a new normal!

I have an amazing husband, supportive family and two close girlfriends. Talking to them without being judged helps a lot and I realise that I’m fortunate.
I don’t know what support you have but would say, if you do have it use it. When you are tired rest. Use any support/help available. You deserve it.

I’m 75 and if I can do it you can. I find treatment days relaxing as I get to sit and chill with a book or crosswords.

Please keep in touch if you’d like to and let me know how you get on.

I really hope this helps.

Warm regards
Jo

[najmahParticipant]

Thank you for your lovely reply Jo and all of that interesting information. I’m similar in age to you, I’m 73. My mum had myeloma 25 years ago and didn’t live very long after her diagnosis but as my consultant said treatment now is totally different to how it was all of those years ago.

It must be so encouraging to see those numbers drop, makes it all worthwhile. I’m glad to hear that your side effects were manageable and your muscle pain has eased.

I’m similar to you to in that I have a very supportive husband, he’s just come through chemo himself after being diagnosed with Non Hodgkins Lymphoma. He’s fine now and on maintenance therapy, an injection of Rituximab every two months. I’m very close to my two daughters and have a good group of friends.

I have my pre assessment on Tuesday 21st, then treatment starts on 28th April. I was a bit alarmed when my treatment schedule came through the post, my final date of treatment is 15/08/28!

I will definitely keep in touch. Thank you.

[Author]

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