Hello everyone, my mother has been on Venetoclax (400 mg a day)
in combination with Rituximab (ones a month) for 2 months now. Bloods are improving but last few days she has having diarrhea. Anyone experienced diarrhea with Venetoclax ? In this case, how did you manage?
I will be grateful for any comments or advice,
Mary
I have been on Venetoclax for 18 months and they upset my stomach. My consultant prescribed me tablets for the diarrhea and some for when I have bad nausea. I do not take them all the time - mainly if I have to be somewhere early in the morning as my mornings are often ruled by trips to the loo 😏. I now only take 200mg of Venetoclax but this side effect still exists! Hope your mum gets something to help her. x
thanks Jobby
Yes. My specialty pharmacy sent a 'welcome' pack with my first prescription bottle (after the ramp up) that included the venclexta, "Quesy Drops' candy for nausea, and an anti diarrheal (Loperamide Hydrochloride tablests 2 mg per caplet "Imodium").
Imodium instructions are 2 caplets at first loose stool and 1 caplet after each subsequent loose stool. I find it works, so I buy my own now when I ran out. I usually only have to take 2 caplets and problem is solved, sometimes have to go one more caplet if the problem continues.
Another thing you can do in addition to Imodium is eat greek yogurt with blackberries or raspberries which in combo provides the pro-biotics and roughage to stabilize your intestines (with the precaution to check with doctor first before yogurt or fresh fruit if you are neutropenic).
I was told to not eat probiotics when I started O+V
I've been on venetoclax for some time now. When I started I had intermittent diarrhoea which seemed to be limked to some foods. However, this was no consistent, Eggs are most problematic but sausage , bacon and bakes beans are irregular in causing an problem. More of a case of what else I've eaten. In my case I've come the conclusion it's oil and fat that is the issue. I control it with the use of loperimide, generally undercrhe trade name of immodium. I find one tablet sorts me out, only taking a dose of two after third lose stool, exceedingly rare. Still one after second. I've also used the instants successfully to ward of diarrhoea when I get an incling I'll need to find a toilet soon, when I need a toilet it tend to be urgent. If your in the UK Boots sell another branded loperimide which is cheaper than Immodium, Galpharm diarrhoearelief, same dose.
Hi I'm on Venetoclax together with Obinutuzumab but only 100mg at moment as I was having bad side effects from the Venetoclax. The only I eased the running to the toilet was to eat Pasta, White Bread basically limit the fibre to a minimum, just be very careful you don't go the other way.Good luck x
Hello Mary. I am taking Venetoclax and had a very severe bout of diarrhea to the extent that I was taken off the venetoclax, (be sure to keep up with hydration , Diarrhea can be a quick way to lose a lot of fluids, Keep up with electrolytes as well . Of course consult with your MD' I had class 4 diarrhea so was instantly told to stop the venetoclax . Immodium is the classic recommended easy way to control . I finally went to hospital after an exhausting bout of 4 hours to the loo ,middle of the night .Be aware of how many trips to the toilet and once again hydrate. I was advised to take pantoprazole as well , I am not recommending anything just reporting what worked for me . Is Mother nauseated or vomiting? Definitely consult your GP internist or whomever is your primary care phyician and don't let things get out of control. I waited too long thinking it would pass. Best of luck. It did not upset treatment much at all to take a respite from the venetoclax and I'm doing fine at 200MG daily.
regards
Robert
Hi Mary, I’ve been on Venetoclax monotherapy since April 2018. too had diarrhoea issues which started during the ramp up. I also had severe neutropenia. I was on a clinical trial so efforts were made to establish what the best level of the drug was for me. So, my dosage was reduced from 400mg to 300 mg daily after only a few months and then, from November 2018 I’ve been taking only 200mg daily. Now, since August this year I’ve had to start taking Laxsol daily as constipation is also a side effect of Venetoclax. I’m not sure if this helps but I thought you should know that the diarrhoea is very likely going to dissipate. I believe it’s a function of how Venetoclax works when it comes to getting rid of the dead cancer cells.
Like others, my Doc recommended Immodium for the diarrhea. He also suggested I split my dose each day as he knows I prefer not to pile on more medications to handle side effects. Please consult with your specialist before doing that though. It does seem to happen more with a lighter meal or fatty foods. It is so inconsistent(pun intended) that it is hard to determine a pattern with the foods I eat.
Hi Marymary19!I had chronic diarrhea for my entire year on zanubrutibib, obinutuzumab, and venetoclax. Immodium did nothing.
But here are two heavy-hitter drugs that allowed me to leave the house: lomotil, which is an opioid plus atropine, at max dose. (My niece the nurse assures me that I have not spent the year as an addict; this drug seems to limit itself to the digestive tract.). AND a very old-fashioned cholesterol-reduction drug called cholestyramine, whose major side effect is--you got it!--constipation. Please ask your docs about this. If you need help managing all this please contact me.
Greetings Mary! I had same stomach issues when I started the full dose of Venetoclax. I was prescribed a stomach protector and changed my times to after dinner, before bedtime time and the issue went away. Hope you feel better soon! Ed
I also took prescribed tablets for Diarrhea. Plus I drank a lot of fluids. I was on Venetoclax for the VIPOR trial for my Transformed Follicular NHL. I had a lot of diarrhea so since I was inpatient for the 12 day trial, I was given hydrating IVs twenty four hours a day, slow drip. It was to protect my kidneys. So be sure your mom drinks a lot of liquids. I also ate plain greek yogurt and tried to avoid any sugary type drinks or sugar in foods. I also ate a lot of the BRAT diet, such as bananas, rice, applesauce and toast. I could not eat anything spicy or with a lot of tomato sauce as it was too rough on my intestinal system. Best wishes to your mom
I had issues with diarrhea while on Venetoclax. I worked with a dietician to keep mine under control. What helped the most was adding a dose of Metamucil dissolved in water once a day. It sounds counterintuitive since it is typically used for constipation, but it solidifies the stool and really makes a difference. I also had to avoid foods like nuts, tomatoes and berries (the seeds were an issue), and some vegetables. I ate a lot of sweet potatoes/yams, green beans, potatoes, rice, chicken, and fish.
The issue completely resolved within two weeks of going off Venclexta. Hope this helps.
Venetoclax plus Rituximab
Month 21 of 24 Rituximab and Venetoclax 
CT scan while on Venetoclax + Rituximab
