[twinzParticipant]

Hi
I have been on lenolidomide for 3 and half years and as I got to the 3 year stage I started to experience severe stomach issues.
I normally suffer with constipation. I started to get terrible stomach cramps and my stomach makes horrendous noises. This the results in having to rush to the toilet. This comes on suddenly which is not good if out and about
I had Laxido for the constipation but haven’t used this since getting these stomach issues.
I went to see my GP who sent me for a colonoscopy and all was ok.
The hospital have reduced my Lenolidomide to 5mg from 7.5mg to see if that helped. It used to be 10mg but was reduced as it made my neuropathy worse.
The reduction to 5mg made no difference but they are going to leave me on that dose.
I have read that diarrhoea is a common thing with Lenolidomide and I just wondered if anyone had any other solutions at all.

Many thanks 😊

[rabbitParticipant]

Hi Twinz,

This sounds a lot like bile acid malabsorption (although I am no doctor). It sometimes occurs when someone has been on lenalidomide for a couple of years.

It would, for example, be consistent with the urgency when you go to the toilet and with the stomach cramps.

Quoting Google Gemini, “Bile acid sequestrants (such as Colesevelam / Welchol or Colestyramine) are remarkably effective:

​- Clinical studies show that over 80–85% of patients experiencing lenalidomide-associated BAM see dramatic improvement or complete resolution of symptoms within 1 to 2 weeks of starting a bile acid binder.
– ​Crucially, treating the BAM with a binder means patients usually do not have to reduce their dose or stop taking lenalidomide, allowing them to maintain their oncology treatment safely.

Timing is crucial when adding bile acid sequestrants (binders) to your regimen. Because these medications act like “chemical sponges” in your digestive tract, they can trap other oral medications and prevent your body from absorbing them properly.”

Regards
Rabbit

[Author]

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