BAM Bile Acid Malabsorption from Revlimid (lenalidomide)

matthew65

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

moodysgoose

I have similar problem. I wonder how prevalent this seemingly permanent side effect is.

matthew65

Aloha MoodyG.,

I had forgotten about this post and it’s funny, I was confronting and viewing some of these issues today. I did stop taking the welchol. But, I am still on the carousel with this issue. I go through time periods where I have normal bowel movements, and then I have what they refer as Motility issues. As you may surmise from my salutation I live in a small community, so that has been a little impediment to getting everything worked up. After I was worked up, of the things that appeared to be is that I actually had SIBO which means small intestine bacterial overgrowth. This kind of problem is hard to treat and usually the recommendation is to do a FODMAP type diet (I’ll let you look that up), and or to treat with a special antibiotic which can target the small intestine. The problem is if you have an overgrowth of kinds of bacteria that shouldn’t be in your small intestine the body can be exposed to things that doesn’t normally face from the waist products and toxins of that abundant improper bacteria. Using Rifaximin was very helpful and it would go away for a while. But it would come back.

I have steatorrea (fatty stool) that literally leaves a remnant coating on the toilet bowl porcelain, under the water. Again this only happens when I have high motility. Sometimes the stuff floats or it may look like it has a shiny sheen to it.There are times that it is normal and I have no problems at all. Lately I had been eating more carbohydrates because a visiting family member is a vegetarian. But for my situation having high carbohydrates or taking/drinking a protein drink as suggested by another doctor, makes me feel sick I literally feel like I’m stoned. I eat Low carbs, and otherwise and vegetables. Because of the feeling foggy minded and a little bit stoned when I have this carbohydrates and sweets the problem with the protein drink is probably the the sugar) but I know when I don’t have these things Life is a lot better. I’m trying to get back to a follow up to see if a gastroenterologist can do some of the testing to elaborate and explain. To make sure I dont have or to address a D lactic acidosis. I have had serious foggy minded unsettled feelings which is different from my demeanorand this is known to be caused by or can be caused by SIBO.

things that work for me: using psyllium which is the raw material for Metamucil), exercise being active, hydrating. I suspect that anxiety and work that deadlines and responsibilities can complicate things. I am a professional which gives me a lot of moving parts in my work life which is probably less than optimal for health recovery. When I talked about these things with my original oncologist who retired, but a well known researcher and treater, he said that he thought it was possible I never get rid of the problems and would have to consider doing a fecal transplant. That just seems too strange to me, but I guess never say never but i’ve had it be normal for probably a few weeks at a time, but often I have motility problems every 3 to 5 days. It’s to the point where I’ve only recently started to keep track of exactly what I eat, then bowel movements, other info.

So I may still have Bile acid issue, the SIBO triggers by bile acid absorption issues, and I borderline pancreatic insufficiency… but I am thinking it’s more likely a sensitivity more likely bacterial overgrowth.

I hope that was helpful and you can navigate your way through the maze. make them explain it to you and look at your diagnostic reports make sure you have the actual copy and not some version in your patient portal which is not always the same to the doctor or dictated by your specialist consultant. If you can, see a gastroenterologist at the same place you did your oncology if it’s one of the big research either a university system or one of the private ones, the good thing is the specialties are great at interacting and records the same place so the ability to cross get information they need is a lot better and more efficient than going to unaffiliated. All right let us know what happens I will do if it’s be helpful. Ciao

matthew65

MoodyG,

Pardon me. Were you told that you have bile acid absorption, and if so are you in treatment or are you post treatment? It can be an effect of chemo treatment. If you are in remission post chemo, then they look to see if you have pancreatic insufficiency to gauge if there is a problem of necessary enzymes during digestion and other stuff. As you likely know certain kinds of chemo especially those used in treatment of the blood cancers (leukemia, lymphoma and multiple myeloma), some of them as referenced above can cause SIBO. I am in curious in knowing if you’re in remission but they still have you taking the welchol (colosevelam) or an equivalent binder for your BAM. I just looked it up and I guess it’s depending on the person but please let me know if you feel comfortable in saying, but different results from what I see. Because I can cut and paste and provide you with better general information about (1) the persistence of BAM treatment, and (2) how to be by acid problems can be caused by bacterial overgrowth, please see below:

1. The recovery of bile acid absorption after chemotherapy-induced BAM (Bile Acid Malabsorption) can vary significantly between individuals. Here's what we know:

For many patients, BAM can improve after chemotherapy ends, particularly if the damage to the intestinal cells was primarily due to the direct effects of chemotherapy. This is because:

1. The intestinal epithelium (lining) naturally regenerates every 4-7 days
2. The transporters responsible for bile acid reabsorption can recover as the intestinal cells heal

However, the timeline and extent of recovery can depend on several factors:

• The specific chemotherapy drugs used
• The duration and intensity of treatment
• The extent of damage to the ileum
• Individual healing capacity
• Other concurrent conditions affecting the gut

Some patients may experience:

• Complete recovery within months after treatment
• Partial recovery with lingering mild symptoms
• Persistent BAM requiring ongoing management

__________________________________

2. Let me help explain the relationship between SIBO (Small Intestinal Bacterial Overgrowth) and bile acid metabolism:

SIBO can affect bile acids in two main ways:

1. Direct bacterial action on bile acids:

• The excess bacteria in SIBO directly convert primary bile acids into secondary bile acids through a process called deconjugation
• This happens prematurely in the small intestine, before the bile acids can properly aid in fat absorption
• The altered bile acids don't work as effectively for fat digestion and absorption

1. Inflammation and intestinal damage:

• SIBO can cause inflammation of the intestinal lining
• This inflammation can impair the normal reabsorption of bile acids in the ileum (the last part of the small intestine)
• When bile acids aren't properly reabsorbed, it leads to bile acid malabsorption

So it's actually both - SIBO directly interferes with bile acid function through bacterial action AND creates conditions that lead to malabsorption of bile acids. This creates a double impact on bile acid metabolism that can contribute to symptoms like diarrhea and fat malabsorption.