[ianmacParticipant]

I registered a year ago but this is my first post. I was diagnosed with MM 15 months ago. My first treatment was VTD which I was on for 20 weeks. Some initial side effects but nothing untoward. Paraprotein went from 34 to 9. I was supposed to get Stem Cell Transplant (my cells were collected) but this was cancelled due to COVID. My pp started rising again and within 4 months went up to 16.
Lenalidomide became available in Scotland as a second treatment and I have been on 15mg Lenalidomide plus 20mg Dexamethazone for 20 weeks. My pp is down to 4 but has plateaued out. Great news but I am finding the side effects increasingly difficult to cope with, the major ones being fatigue and nausea. It now appears that I will be on this treatment for the foreseeable future. While I’m extremely grateful I am unable to do very much other than exist. I feel I need a wee break from this treatment but scared to ask for this in case it does not resume later. Has anybody else found this treatment side effects difficult? Do you think I could ask for a break without offending anybody?

[mulberryParticipant]

Ianmac it is always worth asking your consultant questions like this. The answer will differ patient to patient, but it’s a reasonable question to ask. Even if your consultant doesn’t feel a break is a good idea, there may be another option, such as dosage reduction or longer gaps between cycles.

[ianmacParticipant]

Thanks mulberry. My last 4 appointments have been video calls which is never as good as being at the clinic. But yes I think I’ll be asking some questions next time.

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