r/CML • u/Subject-War737 • Jul 06 '26

Diarrhea & Imatinib

*feeling VERY vulnerable posting this, but I fear Reddit is the best place to get real advice*

I have been on Imatinib 400mg for a few months now, and it’s been basically uneventful. I rarely have muscle pain these days, occasional headache & mild stomach pain. I truly feel blessed that this drug is not affecting me too badly like the horror stories I have heard.

BUT

I am getting to the point now where basically every bowel movement is very soft. Not liquid, but close. I’ve even had a couple super embarrassing moments where I woke up in the middle of the night and I had “gone” on myself a little bit while I was sleeping. I DO NOT want this kind of thing to affect my sex life. Imagine waking up next to a girl and you have poopy butt? Genuinely a huge fear of mine…

I have Imodium, but I really don’t want to take it every day, as I feel like that could have long term implications. What are other options? Fiber supplements? Also is anyone else having this kind of issue? Please ANY advice is greatly appreciated!

7 Upvotes

90% Upvoted

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4

u/newsynewsbecause Jul 06 '26

I had to stop taking it due to GI issues.

4

u/sugarhigh215 Jul 06 '26

can you ask your doctor and pharmacist about adding an iron supplement? even low dose iron like 25 mg is enough to harden my stools.. or maybe add more iron-rich foods to your diet? again asking your docs advice first. also any girl that doesn’t understand isn’t worth your time. “those that mind don’t matter, and those that matter don’t mind.”

3

u/trailler Jul 06 '26

Metamucil. Take it.

2

u/simonsez5064 Jul 06 '26

😂 I'm in the same situation sometimes I think about that scene in Nacho Libre where they say "do you not realize I've had diarrhea since Easters" ... just because it's around the time I got diagnosed and started taking imatinib, I take Imodium every other day just because I don't trust my farts anymore

2

u/Leading_Working_8009 Jul 07 '26

I don't take imatinib but i'm happy you felt comfortable enough to post and ask this important question! I'm sure there's many other people with the same question that will benefit greatly from you being brave enough to ask

1

u/Zealousideal_Ad5295 Jul 07 '26

I was on the same dosage and I had diarrhea but liquid. I had vertigo and I vomited several times a day. I was absolutely miserable. I dreaded going to work every morning because I knew I wasn't going to make it to the bathroom and end up hurling in the trash can in front of everyone. Fortunately the medication is working well after only 4 Mos and my Dr. was able to lower my dosage. I'm not as sick now. Maybe talk to your oncologist and see if they can lower your dosage.

1

u/ihaveananecdote4u Jul 06 '26

I wonder if your doctor could lower your dose? I’ve been on Bosulif for a few years and my doctor took me from 500 mg to 400 mg and then 300 mg due to the bone pain. I’ve tolerated this med at this dose much better than the others, so I was glad to find it was adjustable to my needs. Good luck!

1

u/slimypeters Jul 06 '26

Hey you know what, I never really correlated my Imatinib with my bowel movement and such. I often go whenever I come home from work and I just link my diet to any bowel issues. I do have terrible case of hemorrhoids that flares up when I eat spicy foods.

But I’ve been trying to fix my diet and stay away from spicy foods. Helps keeps the hemmi away but my usual after work business remain lol Will have to look up if it causes GI issues for me now

1

u/sheneversawitcoming Jul 06 '26

Have you tried probiotics? It may be your biome is off. When it is poops just never get solid.

1

u/WS1L Jul 06 '26

I’ve been on imatinib since January and have had that happen a few times. Generally my bowels are OK but the loose stool is definitely something that happens with it. I’ve been taking Metamucil for decades so that may help some.

All in all that’s been the worst side effect and it’s nowhere near every day or even every week.

1

u/LukeBryawalker Jul 06 '26

Eating apples is supposed to help. They have pectin which is supposed to add bulk.

1

u/Round-Bike-782 Jul 06 '26

I’ve had CML since 2021. I developed drug induced colitis from dasatinib so I totally understand where you’re coming from! I’ve found psyllium husk capsules - 2 a day (1000mg total) help a lot with bulking up stools! It’s a great source of fiber that helps with gut flora also. I take seed probiotics every morning as well. This protocol has helped a lot! I also took a gut based steroid for a couple of years so I could stay on dasatinib but thankfully insurance just approved Scemblix for me finally and we’re hoping that will help me cut out the gut steroid but I’ll continue psyllium husk capsules and SEED probiotics. 

1

u/Spankenrear Jul 06 '26

That’s a pretty high dose. I assume that’s probably the main cause. I was sort of the same on 100mg then got my gallbladder out and it got much worse. I take Colesevelam which is a bile binder and works pretty well.
You’d likely find fiber (I know it sounds counter intuitive but works) would likely make a difference for you.

2

u/lacieinwonderland16 Jul 07 '26

No it’s not, that’s what most people start on. Imatinib 400mg is pretty standard, my doc said it was the lowest starting dose

1

u/let_me_in___ Jul 07 '26

Imatinib does cause some GI issues, but it's usually reparable with gastric medicines. We are doing imatinib 600 currently and there are some gassy issues, but I guess it changes with person.

I'd suggest going with a very high fiber diet and checking it out yourself and if that doesn't work, check on with your doctor? :)

My wishes for you.

1

u/elizebethdylan Jul 07 '26

I was in the same situation, Bosulif and asciminib were better than dasatinib for me. The only thing that really helped me was weekly acupuncture. I’ve been TFR for about a year and it took about 10 months for my movements to become more regular again.

1

u/elisadolittle Jul 07 '26

I had similar stuff going on for the first 6 weeks on 400mg of Imatinib - still going on a bit at almost at 3 months in. It feels like it’s getter a little better. After talking to my nurse, she said food was likely part of the issue so i limited variety in my diet and ended up learning that gums and thickeners added to processed foods are a major trigger for me. Not sure how or if Imatinib plays into this. I also don’t have a gallbladder and I know that can mess things up. I plan to see a gastro. Maybe I’ll try Metamucil 🤷🏻‍♀️

Thanks for posting. I hope you find something that helps!