[sandy123Participant]

My second stem cell transplant has worn off and I may be starting on Ixazomib, Revlamid and Dexamethasone (IRD), if I do not meet the inclusion criteria for a clinical trial.

Does anyone have experience of this treatment? I think the addition of Ixazomib is fairly new so I would also be interested to hear from anyone on RD.

Last year I celebrated my ten year anniversary since diagnosis, so I cannot complain, but the start of new treatment can be a little daunting and it would be great to know how others are getting on with this regimen.

[bernardParticipant]

Hi. I started IRD in June last year. On my 7th cycle now. The thing I didn’t know is that from now on i, it seems that chemo is a permanent part of your life, which came as a shock to me. The biggest side effects are fatigue, lack of sleep and the desire for eating! The steroids tend to be the reason for all of the above. I was on 40mg and have just dropped to 20mg to see if that helps. You can get sleeping tablets to help with the lack of sleep but I use them sparingly. I find I get a little high for a couple of days after steroids and then crash about 4 days after steroids. I am not aware of any specific side effects from I OR R.

Congratulations on the 10 years. I’m not there yet.

Good luck.

[alanrParticipant]

Hi. I started on IRD last October, but 2 weeks in had a heart attack, so I had to come off for 4 weeks! I had just been diagnosed with angina, but I do find the chemo regime does play with my heart and I am never as good at the start of the week when I have my Dex and Ixamobib. My sleep problems are mainly on a Monday night, but sometimes it’s no problem, so it’s erratic. My heart rate does seem to go up then so that may be the cause. My Dex has been reduced to just 4mg, but I still feel the difference after I have it. I have now developed quite tender finger tips, rather than just a loss of sensation. The IRD has worked in bringing down my light chains from over 1000 when I started to about 200 two months ago – getting light chain results seems a bit unpredictable. Other side effects seem less than with the VTD that I started with, not so much loss of taste or appetite and not so shaky. I was also taken aback when I found it was an ongoing treatment, but I hope a lower maintenance dose will have less effect. At least on a pill regime I don’t have to go into hospital for infusions, so I can have more of a normal life. I only managed about 3 years after SCT before I had to start treatment again, so everyone is different and I guess side effects are as well. Good luck.

[janwParticipant]

Hi Sandy

I was diagnosed with myeloma in 2010 and similar to yourself have managed to achieve my 10 year anniversary and hopefully very soon my 13 year anniversary.

I was very fortunate that my first SCT kept me in remission for 5 years, but I quickly relapsed after my second SCT which only lasted 20 months. My light chains were rapidly rising to above 2300 after the second SCT when it was decided by my consultant in 2018 that I should start IRD which had only just become available.

In 2018, I never imagined the IRD treatment would be not only able slowly tackle my rising light chains, but also be able to keep them at a low level of around 20 for 5 years. I feel very lucky that this treatment became available just at the right time for me to try.

I think the main side effects of Ixazomib can be gastrointestinal ones with constipation and diarrhea being fairly common, together with nausea and vomiting, as well as reduced platelets. However these can be managed by your consultant with meds. The usual problems of weekly steroids do cause issues with lack of sleep and the crash days after the steroids. The hardest part is the high dose of weekly steroids at the beginning of treatment which can be 40mg, but this can be quickly reduced to 20mg. I now only take 6mg of weekly steroids. I found the high dose of Revlimid caused be quite a lot of fatigue, but again this can be reduced over time.

As others have said this treatment is tablet based and very easy to take at home without the need for hospital visits apart from a monthly blood tests followed by a monitoring telephone call with your consultant.
I hope your next treatment works well for you.

Regards
Jan x

[kh0305Moderator]

Hi Sandy123,
Dad was diagnosed with MM in Jan 2013 and started his IRd treatment a year ago. So far we have found his side effects are much better than when he was on Dvd, the main ones being mild gastro issues, the usual steroid insomnia from the dex and neuropathy. He was kept on a high level of Revlimid far too long (an oversight) which has given him memory issues. He has now had the dose related so hoping that will improve the memory loss. As Bernard mentions, we also hadn’t realised that dad would be on IRd going forward until it stops working… we were expecting a different maintenance regimen at some point. But the tablet form at home does make it easier t least. Anyway, so far we have plateaued so hoping it will continue.
Good luck with the treatment xx

[sandy123Participant]

Thank you everyone for your helpful replies to my post about IRd treatment.

Thank you @bernard for the advice on managing dex and for explaining that the high dose at the beginning of treatment can be lowered if all is going to plan.I agree with you that the thought of being on permanent chemo has been a shock for me too. I was never offered maintenance treatment between transplants so I have been fortunate to have two blocks of drug-free years, apart from Zoledronic acid infusions. That’s great you’re on your 7th cycle and I hope all continues well for you.

Thank you @alanr for the encouragement about your light chains responding so well to the IRd. Thats amazing! My consultant hasn’t mentioned my light chains this time round – I think for me it will be about the paraprotein counts reducing and I have a high percentage of abnormal plasma cells in my bone marrow – but of course that can only be monitored by having bone marrow biopsies (not such fun). That’s also hopeful that you haven’t found your sense of taste affected as I did not enjoy that metallic taste caused by some previous treatments. I hope your light chains will continue to go down.

Congratulations @janw on approaching your 13-yr anniversary! That is really encouraging to hear. It sounds very hopeful to me that the IRd has been keeping you steady for 5 years so far and long may that continue.

I’m also encouraged to hear @kh0305 that your side-effects have been less troublesome than those from DVD. I had DVD before my transplant so I remember what those are like!

Sorry for the long message. There’s a problem in my local clinic so I haven’t actually been prescribed the treatment yet and I’ve been busy chasing that and haven’t logged into the forum since my post. I really appreciate all these responses. Thank you 🙂

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