Hi, I’m taking IRD (Ixazomib, Revlamid (Lenolidamide) & Dexamethesone) as third line treatment for myeloma. It is being very effective but the side-effects seem to be building up. I wondered if anyone else is on this treatment and how you are finding it?
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Hi @Coastgirl and welcome back to the forum.
I have a different diagnosis and so not familiar with those drugs that you mentioned.
I’m pretty sure @Spangleystar and @Byrnebaby have been taking some if not all of them so I’ve tagged them in this reply and hopefully they will be able to share experiences.
If there are others I’m sure they will respond.
Hope that helps 
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Hi @Coastgirl thanks @DuncanB for the tag but I’m not sure I’m that useful. I did four cycles of induction treatment with Dex, Lenalidomide, bortezomib and cyclophosphamide it did feel cumulative- was definitely tougher by c4, I only had tiredness as a significant side effect. Dexamethasone I still take for the moment and I don’t tolerate it well, so my dose is half what it is typically and will hopefully go altogether when my body gets used to Isatuximab (my consolidation treatment post Stem cell transplant).
@Byrnebaby was on the same initial treatment as me, but is very well connected on all of this so may well have more to add.
I wonder if the @BloodCancerUK_Nurses can help with managing side effects further.
I hope you start to feel better soon xx
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Thanks @Spangleystar for responding.
I knew you had some of the medications mentioned by @Coastgirl so thought some insight better than none.
I agree that the @BloodCancerUK_Nurses will be able to advise when back on Monday.
Take care and hope you are managing with the next phase of treatment 
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Hi @Coastgirl
Sorry to hear your side-effects are building up. In my experience this is common with IRD and it is important to let your team know if you are struggling. Sometimes adjusting the doses can help. I often feel because it is a tablet based regime, people do not realise always appreciate how how difficult the side effects can be and like @Spangleystar it can be a cumulative effect especially as it is 3rd line treatment.
In case it is helpful, I have enclosed some information about IRD from Macmillan here Macmillan IRD treatment If it would be helpful to talk things through in more detail, please do not hesitant o contact our nursing line on 0808 280 888 option 1
Kind regards
Fiona (support services nurse)
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Hi @DuncanB @Spangleystar and @Fiona_BloodCancerUK
Thank you so much for your prompt replies. It’s amazing how many different drugs there are available these days and I know we are fortunate to have them even though they have their moments.
That’s an interesting insight that people don’t always realise tablet-based regimes have their challenges.
Thank you @Fiona_BloodCancerUK for the Macmillan info’
@Spangleystar I hope you are recovering well from your Stem cell transplant.
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Thank you @Fiona_BloodCancerUK for your suggestion of calling the nursing line. I have tried on the number above, and also on 0808 2080 888, but I have been unable to get through. One time I was asked to hold the call and was cut off after 22 minutes. The next time (using the same number with the extra digit) it told me I had dialled an incorrect number. There was also a recorded message saying that you are having intermittent problems with the phone line so I’ll wait a few days and maybe try again next week. Hopefully it will be sorted by then 
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Hi @Coastgirl
Sorry to hear you have experienced problems with our phone line this afternoon. We are working on this and hope to have this resolved very soon.
If you would like to speak with us before next week, please do email us at support@bloodcancer.org.uk We can also arrange a scheduled call with you.
Kind regards
Fiona (support services nurse)
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