[shebeeParticipant]

Hi. This is my first post and I just want to talk more than anything. My husband was diagnosed last June with myeloma after having pains for a few months and ended up in hospital as he couldn’t breathe. He started on VDT which went well for the first 4 months then it stopped working and he’s now on Revlimid. He is adamant he won’t have SCT, doesn’t want the stress of going in and out of hospital for the pre SCT chemo followed by the SCT itself. He’s an intelligent bloke and says he wants his quality of life above a long life (he’s 62). I guess what I’m asking is how long does Revlimid work for? I know there are probably no simple answers but thanks for listening.

[mulberryParticipant]

Hi Shelbee, Lenalidomide is, I’ve read, the most effective myeloma drug so far. Like all myeloma drugs it works for more of us, for longer, than other individual myeloma drugs.
In some USA centres SCT is now rarely if ever recommended as US patients have access to more personalised drug combinations and the latest approved drugs which are not yet available for NHS patients. However in UK SCT is still the standard protocol for fit enough patients (most under 70s & some over 70s) because this is the way to keep the disease inactive or stable for a longer period than without it, (now that lenalidomide maintenance is available on NHS the average time until another treatment is necessary is 60 months, 5 years. ) I presume that your husband still has signs of myeloma being active otherwise he would not be needing chemotherapy before going in to hospital for SCT, so it’s unlikely that lenalidomide alone would provide your husband with years of inactive disease, and it’s for patients like this that SCT has a clearer benefit (for me it seemed to reset the immune system) but other good drugs are now available. He should check with his consultant whether he will later be eligible for daratumumab, velcade & dexamethazone (DVD) which seems to be being very effective. SCT isn’t really a straightforward choice and your husbands concerns about SCT are perfectly valid, (although some of us have much easier experiences than we expect) but his worry about pre SCT does not match my experience. I had a cyclophosphamide infusion as my myeloma was still active. This took a total of 2 or 3 hours in hospital, after which I drove straight away to another hospital as my mother had been admitted in an emergency & I hardly had time to think about it. The cyclophosphamide had no side effects, except I lost my hair 2 weeks later.

[mark-j-underwoodParticipant]

According to many Consultants who I’ve spoken with, all tend to be saying that with the gamut of medications available now and what is expected to be available shortly, we are rapidly heading towards the point where, for most anyway, SCT will become a treatment of the past for Myeloma.

Yes SCT is uncomfortable, I’ve had two with a nine year gap in between and the SCT took 14 days in hospital on both occasions. The worst part I found was all the prep work to get to the point of SCT. It took me around 6 months to fully recover, but personally I’ve found SCT well worth the daily grind of getting through the procedure.

[alexandraParticipant]

Hi Shebee
I’m not sure how long Revlimid works for but I did meet someone at one of the Myeloma meetings who had been on it for 5 years and had a fantastic quality of life. I also chose to decline a stem cell transplant and I think it’s a very difficult but individual choice to make. The most important thing for me is knowing that family and friends are supportive of my treatment decisions.

[bearParticipant]

My Sheila declined SCT and had VTD without any ill effects. After a relapse she had DVD and dara maintenance – still doing well 7 years down the line.

[dickbParticipant]

I took Revlimid as a maintenance drug from April 2015 until Jan this year. It worked well for me as I was told to expect only 18 months from it before it stopped working. My biggest issue was the side effects, for the first couple of years constipation that slowly turned into Diarrhea upto 3 times a week. The other was neuropathy in my feet. Since coming off Revlimid my Bowel movements are near enough normal, the neuropathy has improved dramatically and I don’t get night cramps or restless feet. If it hadn’t of stopped working I’d have stayed on it because it did very well in controlling the MM.

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