[susantrParticipant]

Hi

I wonder if anyone can help. I have been randomised to commence Revlimid maintenance as part of the Myeloma XI trial. I am 10 months post SCT achieving MRD-ve status on BM and PET/CT. I know Revlimid increases PFS but also comes with a host of side effects including secondary cancers. I have enjoyed 10 lovely months being drug free. My dilemma is should I take the Revlimid and risk a secondary cancer and immune suppression or simply not take it and when I relapse then commence the treatment. I know there are no guarantees with this disease, but I am hopeful that I have a decent remission without the toxic drugs being taken when they are not required at this moment. I am 52 and am really struggling with this decision.

Any help/advice is greatly appreciated.

Sue

[avantrompParticipant]

Hallo Sue
I have been taking Revlimid for over 7 years and the only significant side effect for me has been diarrhoea. I cope with this very well with loperamide and Questran as needed. My Revlimid dose is very low, only 7.5mg., 3 weeks on and 1 week off. I have not had an sct and never reached remission. The possibility of a secondary cancer was never really an issue for me because I had no choice. My consultant advised me to watch out for skin cancer but said that any new cancer would probably be relatively minor. I understand that a secondary cancer is more likely if the Revlimid is taken in conjunction with Alkeran(Melphalan) and I believe this no longer happens.
My red and white blood cells are slightly depressed but I live completely normally, doing all the things I did before the MM.
There are several interesting threads on Myeloma Beacon relating to the effectiveness of Revlimid maintenance after sct, for example
http://www.myelomabeacon.com/forum/revlimid-maintenance-meta-analysis-t7365.html
Good luck with your decision
Annette
All the best with your decision

[susieParticipant]

Hi Sue,

I was on the same trial though I didn’t have a transplant. I was offered maintenance and it took me a few months to decide not to have it. I’ve had 2 1/2 years drug free and feeling very well. I feel it’s allowed my body to fully recover and hopefully when I relapse, the disease may be more sensitive to the drugs. But that’s just my own thoughts.

I wish all the best

susie

[susantrParticipant]

Dear Annette and Susie

Thankyou for your informative responses. It’s always nice to hear other patients experiences. They have certainly given me plenty to think about. Thank you once again.

Sue

[HelenParticipant]

Hi Sue
I was on the same trial back in 2011 and after transplant I was randomised to Revlimid which I took for 15 months until I relapsed. I’ve been on the various other anti myeloma drugs continuously ever since having had no remission at all.
I too had the diarrhoea problems and tiredness as side effects but all very manageable- I went to New Zealand and travelled as much as possible then- which was great and I’m so glad I did it since I’ve not really had the chance since.
I really felt that revlimid kept my disease damped down for that spell of time.
Good luck with your decision.
Love Helen

[susantrParticipant]

Hi Helen,

Do you mind me asking after transplant were you in CR? I have thought about this long and hard and I am not going to take the Revlimid. My thought process is this. I was Mrd-ve in both October and December 2016 by BMAT. PET/CT confirmed no myelomatous activity in January. Stats (I believe I am a statistic of one) show a median PFS of 28 months on this result. So that would be a further 17 months which I would be taking a drug when not needed. The Revlimid increases PFS but not OS so I think I should take this when I relapse. I don’t want to take a drug out of the arsenal until it is needed plus who knows when I will get the chance to be drug free again? It we only had a crystal ball decisions would be so much easier. Who knows if I am making a wrong/right decision. Only time will tell. Thank you very much for reply. Very much appreciated.

ps I go away soon to Singapore for a whole month, so I agree we ought to do as much as we can when we feel up to it.

Sue x

[HelenParticipant]

Hi Sue
I was in complete remission- no mm cells on BMT and zero light chains – this lasted about 6 months then they started to come up above normal again- took a full year after this before I started treatment again.
I too agonised over the decision but I was glad I took it.
One of my friends has been on it now for 5 years and is doing really well.
Love Helen

[whoopiscubaParticipant]

Hi Sue they put me on this and the second day I went to the bathroom to clean my teeth and to wash the toothpaste out my mouth I realised that I could not keep any water in my mouth. I turned on the bathroom light and found my right eye by my mouth not knowing at the time I got Bell Parsly . As Revlimid also attack the nerves and unfortunately it did not agree with me . It happen on 26/11/16 and I still getting my face back to normal with excerise. Never went out nowhere for 4 months apart from hospital appointments .  All they said I was one off the unlucky ones . Great.

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