[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.

[morwennaParticipant]

Thanks Rabbit, that’s good to know.

[morwennaParticipant]

I had SCT 2 years ago, and have been on Lenalidomide for about 20 months and am in remission.Initially it was 10mg, then put to 7.5 and now 5mg. I have gradually developed awful diarrhoea at unexpected times, fatigue and feel under the weather most of the time. I’m wondering about carrying on wirh the Lenalidomide as it’s making my quality of life pretty poor.

[morwennaParticipant]

Hi, I seem to be in the same situation as you. I have found a low fat diet and a sachet of Questran Light every morning does the trick. No more diarrhoea and dashing to the loo! You need to get this on prescription from your consultant. Good luck. My only issue now is fatigue.

[morwennaParticipant]

More greens for me then.
There is also a very interesting series of podcasts called The Myloma Minutes, which I thoroughly recommend

[morwennaParticipant]

Thank you Rabbit, that was very helpful. Please continue posting

[morwennaParticipant]

I had a peer buddy just after I was diagnosed with MM last year. It was 6 sessions on Zoom, and I found it incredibly helpful when I was reeling from the diagnosis. It was so good to talk to someone who had been through the treatment, and to see that there was light at the end of the tunnel. I would thoroughly recommend the service.

[morwennaParticipant]

I have MM and got travel insurance through Avanti. They ask detailed questions about your condition. My consultant says it is not “terminal” until the final stage, but is “incurable”. Avanti seem happy with this definition. I pay £26 a month for travel in Europe.

[morwennaParticipant]

Thanks for your reply. I have been on Lenalidomide for 5 months now. It didn’t seem to change how I was feeling.
Wishing you a Happy New Year too.

Morwenna

[morwennaParticipant]

By the way, I am 70 so know I was old to have a SCT

[morwennaParticipant]

Thanks, I appreciate your reply. Certainly makes me feel better

[morwennaParticipant]

Thanks Rael that’s good to hear. I think I’m a bit too hung up on paraptoteins,and I’m beginning to appreciate that we all have different levels.

[morwennaParticipant]

Yes I felt very anxious before treatment not knowing what the side effects will be and how you will respond. My anxious feelings definitely reduced once I started treatment. Hope yours do too.

[morwennaParticipant]

Thanks David I’ll check that out.Im on DVTD treatment

[morwennaParticipant]

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