Venteclax

[koyemah]

I've been on this since September 2024, managing well but lately I'm.having intermit diarrhea ...is this normal ?

[Cllady25]

I see you are new to our site, Welcome, and thank you for posting your concern.

Seeing that you are not a native American, there may be different concerns for you with the side effects of any medications, so your having this concern and acting on it by asking your questions is perhaps even more important.

While we are as humans alike in a lot of ways, there are differences that we cannot know without the medical professionals' knowledge.

I would suggest anything that is happening on any kind of regular basis that you cannot know for certain the cause of, contact your CLL Dr. It doesn't hurt to ask the question and it does help you not to worry.

You probably know this, but it never hurts to hear the helpful things you can do for yourself while in treatment.

One thing to begin right now is to be certain you are well hydrated--drink the amount of water that is suggested while you are taking Venetoclax---it helps to clear the medicine out of your body in a timely manner so your liver and kidneys do not get harmed from the medicine.

Give your Dr. a call and ask the question--give a message that tells the details of your episodes of diarrhea--times it happens, anything you can connect to those episodes and how you are feeling.

Diarrhea is listed as a "not as common" side effect in the following article that overviews the use of Venetoclax and any reported side effects:

mayoclinic.org/drugs-supple...

Please let us know how you do.

[AussieNeil Partner Administrator]

When I had acalabrutinib, obinutuzumab and venetoclax treatment, it was the unexpected occasional onset of diarrhoea that I found the most challenging to live with after my bone marrow had largely recovered from treatment. It took a few months after I finished taking acalabrutinib and venetoclax before my gastrointestinal system returned to normal. I felt it was the venetoclax rather than the acalabrutinib which was responsible.

Neil

[lankisterguy Volunteer]

Hi koyemah,

I also had short bouts of diarrhea for most of the 6 years I was on Venetoclax. Typically 2-3 times per week for 1 hour each, I would have a thorough clean out without cramps or pain, and it would pass just as quickly as it arrived. I could not find any coincidences with food choices, but I was taking the 4 pills at breakfast with only fruit and coffee. The incidents always occurred mid morning to mid afternoon.

Len

[Cadelove in reply to lankisterguy]

I have been on Venetoclax for four months. I’m having diarrhea very soon after taking four pills in am after eating small amt. I was told to take anti diarrhea tablet but if I take daily I feel like I get constipated with terrible abdominal pain. Can I space the four tablets out over a couple hours or do I have to take them all at once. Thanks for being there. Y’all are the best

[AussieNeil Partner Administrator in reply to Cadelove]

If you haven't already tried switching to taking your venetoclax in the evening, see if that helps. Several members have shared that this works better for them.

Neil

[thb4747]

Hi Koyemah,

In my experience that’s quite normal. A couple of years later in my experience things turned full circle and ever since I’ve had mild constipation.

[Dragonfly2007]

Hi koyemah, yep happens to me too. I can't link it to food particularly however I have stopped taking the anti nausea tablets as a side effect of them is diarrhea 🫣 I've played around with the time I take my ibrutinb and ventoclax and what seems to work best is to take them half way through eating my main evening meal, this way any diarrhea is first thing in the morning. I also find it essential to drink 2 litres of water a day.

[SeymourB]

Early on, I had severe diarrhea - sudden and uncontrollable - once.

Then I had a weekly bout with diarrhea with cramps, but it eventually went away after about 6 or 8 cycles. I tried not to take the Imodium A-D/loperamide unless I had 2 sessions in a row.

I was also on obinutuzumab and pirtobrutinib.

=seymour=

[skipro]

Sorry to hear about your diarrhea.

It can be a common side effect and I was given a manual for my treatment that talked about what to eat when I got diarrhea and what to eat if I've got constipated, which happened cycles for 18 months

it could also be an infection and it would wouldn't hurt to have your stools tested.

Good luck in God bless.

ski pro

[Flute117]

Yes! It was a problematic side effect of Venetoclax for me to the point where I was losing weight unintentionally.

I worked with a dietician to adjust my diet. I avoided most insoluble fiber; I avoided anything with skins and small seeds like blueberries, strawberries, and tomatoes. I upped my protein - ate a lot of yogurt, cottage cheese, salmon, and chicken.

Additionally, she recommended a daily dose of Metamucil (most commonly used to relieve constipation) which was key to bulking up the stool and relieving a lot of my diarrhea. It didn’t stop completely, but happened far less frequently.

Try to avoid leaning on bland carbs which is tempting, and can be soothing, but not nutritionally beneficial. I was told to include some protein with any carbs I ate.

If you have access to a nutritionist or dietician through your cancer center, I recommend taking advantage of their knowledge.

Good luck - and I hope it helps to know that there is some help for this.

[BigDee]

Hello koyemah

I had problems with diarrhea 2-3 times a week during venetoclax treatment and continue to have diarrhea 1.5 years after finishing treatment. I am having testing done now to find out cause. SofiaDeo had what I felt was a great suggestion. She suggested where the venetoclax directions say to take with food, means to take it after you have finished your meal, to keep your stomach from being irritated by the venetoclax. Blessing.

[Mango357]

Coconut water is high in electrolytes so is broth & barley water. Green tea, ginger, oats (helps PH balance), kefir, cinnamon, peppermint, fennel. Fresh ginger can be minced in food as it cooks to maintain tummy issues. I keep oat ginger cookies around for gastric disturbance however this combination might be hard to find so you may have to get one of each or have someone bake them for you.

[SofiaDeo]

One of the "fiber supplements" available in the US is a compound called "polycarbophil". It's a stool "normalizer", helping both constipation and diarrhea. Even though it's classified as a laxative, it also helps with diarrhea.

go.drugbank.com/drugs/DB09311

FiberCon is the most common brand name, there are generics available. You do need to have adequate water intake if taking it.

[Mango357]

Almost forgot oral rehydration solution (ORS) made with water (Voss & Gerolsteiner are very good when sickly), black sugar (Asian market for potassium, rich in nutrients and antioxidants), and Celtic salt which is mineral rich. Ingredients: 1 liter of clean drinking water, 6 level teaspoons of sugar, and half a level teaspoon of salt. Regular sugar & salt can also be used for ORS to help the intestines absorb fluids and electrolytes more effectively, replenishing what's lost during diarrhea.

[HappyDave]

Sorry, but it was for me and it has continued after treatment. I was given treatment to treat and prevent it but they didn't work. I accepted it and to date, the benefits of the treatment have been self-evident.

[Giblet1]

Yes, it is normal.