[paulomarinheiroParticipant]

Hello all,
I would very much appreciate any comments about this dilemma I find myself in. I’m going to the hospital on Wednesday and would’ like have some background.
I was diagnosed last December and went through the Isatuximab VRD regime which was incredibly successful and by 1st July I went on to the maintenance regime.
3weeks ago my blood test showed no trace of the paraproteins and other stuff and I’m in full serological remission. 🥳🥳
Then I had a week’s break from everything, then had the usual fortnightly Isatuximab and back on the daily 10mg Lenalidomide 3 weeks out of four. Since then I have felt awful, fatigue, constant nausea, upset stomach, constipation and generally run down. In fact  I decided to stop taking everything on Thursday and am already feeling better (Sunday).
I can’t help feeling the Lenalidomide may be responsible, maybe it’s cumulative and my body just needs a rest? (When I was on treatment at twice the dose the side effects were not as bad as recently).
Or maybe I’ve just had a bug or something, but have not had a temperature.
Also I understand some folk don’t have any maintenance and at this moment I feel like doing that and taking my chances, the recent side effects were pretty awful.
I was also taking Aciclovar and Co-Trimoxazole and have stopped those too.
I’m 73, fit and strong but a bit knackered at the moment!
Many thanks
Paul

[gcoulterParticipant]

Hi
Personally I would think twice about maintenance.
Yes your remission might be shorter but in my opinion that’s more than made up by a better quality of life.
I completely accept medically speaking maintenance is the recommended route. But studies that this is based on don’t take into account the impact on your quality of life, especially in the long term.
For context my wife was diagnosed 12 years ago and had no maintenance post SCT. The three years in remission was the best period, no dealing with the side effects no drug cycle, just getting on with life.
The last 6 or 7;years she’s been on a constant treatment cycle, but takes breaks usually a month but sometimes longer.
This is an ultra marathon, and you need rest breaks to give yourself a break, to reset and get ready for the next leg.
We’ve found the medical teams are very understanding when she’s done this, ultimately it’s your personal choice,

[morwennaParticipant]

Hi Paul, after 18 months on lenolidamide maintenance I decided to stop. I felt fatigued nauseous and had debilitating diarrhoea. I did lower the dose from 10mg to 7.5mg then 5 my, but still felt awful most of the time. Like you, I’m in my early 70s. I’ve been maintenance free for 6 months now and have felt really well again. When the Myeloma does come back, my body will have had a drug free period before more drugs! And I will have had a time of feeling well again.

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