BAM Bile Acid Malabsorption from Revlimid (lenalidomide)

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matthew65
matthew65 Member Posts: 2 Member
edited February 2023 in Multiple Myeloma #1

Aloha....

I was in the Accent clinical trial for multiple myeloma, which was a four cocktail (DKRD) or Daratumamab (Darzalex); Carfilzomib (Krypolis), Lenalidomide (Revlimid), and Dexamethasone (steroid). This was 24 month clinical trial and about 8 months in I started having #2 (bowel movement) issues. I developed Bile Acid malabsorption which is a known side effect of taking the Revlimid (cousin of Thalidomide). I am 1 year post clinical trial and I am still having BAM. I need to take Colesevelam (Welchol) pills which is a bile acid binder, or I have problems. Gosh, I sure would like to wean off it and never had issues with #2 before this.

I would appreciate any information from anyone willing to share if they had this problem and if it went away and what they did, or how long it took. Or if the problem is ongoing and doesn't resolve, that you still face it. Oncologist thinks it should have gone away post Revlimid. (I am not taking Revlimid for almost 9 months, and I did not need to do stemcell Tx).

I am now being worked up by a gastroenterologist that said there are some other issues like treatment induced celiac disease.

Thank you for any info!!! Clinical trial was in Seattle at Swedish stage II, single arm. Great doctors and staff!

msk