[ipg67Participant]

Hi all, I’m currently in remission after being diagnosed in 2023. I’m on Lenalidomide
Along with AdCal as I presented in bone damage.
Everything is going well although I have diarrhoea Constantly and although getting various medication prescribed to sort it. They don’t make much difference. Does anyone know of any diet that they use that may help?

[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.

[ipg67Participant]

Hi Morwenna,
Hope you are well other than the obvious.
I was on Questran for just over 9 months, varying dosages. 1 a day, 1 every other day, half a sache daily but made no difference. I am now prescribed a tablet version which I can remember the name of at the moment but although it hasn’t stopped I am more in control. I’ve only been on these a few weeks so hopefully they’ll make a difference. I’ve stopped caffeine this past week and carbonated drinks. Although I only had a bottle of lucozade on a morning to kick start me as like you the fatigue does kick in.

[rabbitParticipant]

Hi ipg. Welcome to the forum.

I can suggest two alternative ways of improving on the diarrhoea front.

1. I gradually umproved my diet, to boost my health and prognoais. Moved towards emphasising whole foods: beans, nuts, cereals/bread, fruit and veg, some (but not a lot of) dairy and eggs. Very little junk, lots of fibre.

That improved my diarrhoea. If you are wondering why I am not mentioning meat, that’s because I have been vegetarian for decades.

2. The effects of lenalidomide can accumulate over time. About 18 months into remission, diarrhoea returned and fatigue got worse. In response, my doctor cut the dose from 5mg to 2.5mg. That dealt with it again.

Regards
Rabbit

[pedro16Participant]

Good morning Morwenna.

As I’ve just come out of remission, the numerous medications that I currently take as part of my Chemotherapy, often reference the dreaded diarrhoea, however unlike several posts, I’ve not changed my diet too significantly. I certainly do think it is something I really should consider, but with Children and Grandchildren staying pretty frequently for meals, I’ve found it to be a bit of a challenge for my wife.

As I have said, I’m fortunate that mine is not constant and so my current remedy is taking Imodium Instants when required (I have checked with my Consultant about this course of action) and ALAWYS carrying some with me, when I go out.

I can only say that I hope your situation improves.

[dahlia55Participant]

I have posted elsewhere on the forum about the horrible diarrhoea and sometimes vomiting that I had due to Lenalidomide. Any fats in food would exacerbate it.It was very intrusive and really interfered with life . I have been prescribed Colesevalam and this has made a huge difference – life has returned to normal and I can eat a normal diet – I would really urge anyone with this side effect on Lenalidomide to ask about medication to help .I think Colesevalam is supposed to be better than Questran in managing this .

[ipg67Participant]

Hi and thank you for sharing your experience.
I have recently been given Colesevalam and it has been life changing in putting me back in control. I still have some diarrhoea but I’m in control now and don’t get caught out.

Everyday day has challenges but I’m in control of them.

[Author]

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