Month 21 of 24 Rituximab and Venetoclax

[Fastbike14]

I'm doing well with this treatment CLL wise with all bloods within normal range. Antibody levels are however below being of much use.Past 10 weeks I've had chronic diarrhoea with stool tests coming up negative.

Blood tests all negative including C diff.

I've been advised to stop Venetoclax for 2 weeks to see if this helps and have an appointment for an antibody PCV 13 injection on Friday. Wednesday, joy of joys, an appointment with the rectal specialist to rule out other causes.

Any pearls of wisdom or similar experiences from the group are welcome

[Walkingtall62]

This is a bit bizarre but I was saw a programme where kiwi fruits, with skin on, were suggested. Of course I don’t know a thing about you so please act with care. Admin please delete this post if not appropriate

[Fastbike14 in reply to Walkingtall62]

Thanks for your reply. I've certainly been increasing my intake of pro biotics and eating gut healthy foods. I've a history of IBS and diverticulitis disease but this was under good control and I've never had anything like this!!

[SofiaDeo]

What foods are you eating, and what time of day are you taking the V? A fattier meal means more complete absorption, so less V remains in your intestines. For me, after dinner worked best, a majority of the time post V was closer to bedtime. When I was taking V in the AM during induction, I had a lot of nausea.

[Fastbike14 in reply to SofiaDeo]

I've always taken the Venetoclax in the morning with toast and tea. Never been one to have a big breakfast. Lunch is usually a sandwich and main meal in the evening about 19.00hrs

[SofiaDeo in reply to Fastbike14]

Well, then you aren't absorbing the maximum amount of venetoclax; I wonder if a relative excess, is irritating your intestines.

[Fastbike14 in reply to SofiaDeo]

Thanks SofiaDeo, I think you may have hit the nail on the head. It's a simple change I can make when I restart my meds

[Poodle2]

Diarrhoea can be a common side effect of V. Definitely had that myself, several times a week, with cramping as well. It lasted even when I finished the drugs, it kept on going on for another 4-5 months. Could it be just a side effect? Do you have a temperature etc.?

[Fastbike14 in reply to Poodle2]

Hi thanks for your reply. I've had 10 weeks daily up to 10 times a day!! Very hard to manage as you can imagine. Consultant agrees Venetoclax has this side effect but is surprised its so late in my treatment. Historically I've had a perforated bowel and suffer with IBS and diverticulitis. I've never had anything like this. I have no temperature but do have cramps when I go to the loo.

[Poodle2 in reply to Fastbike14]

That really sounds a bit extreme, sorry to hear that. Hope you will get some helpful tips from others. Defo needs investigating...hope you find some answers and solutions soon 🙏🏻❤️🙏🏻

[Graham2222]

I had the same experience as you, and the same tests. Your IBS history won’t have helped, and I don’t share that.

For me, I was advised to stop Venetoclax until the stomach trouble subsided (a few days) and then resume at three instead of four tablets. That made things better, while not perfect.

[Fastbike14 in reply to Graham2222]

I will have this conversation with my consultant tomorrow as well as a confession that I'vebeen taking the Venetoclax without having a full meal. Thanks for your input. All the best

[Graham2222 in reply to Fastbike14]

Thank you. I meant to add that, like SofiaDeo, I experimented with taking Venetoclax at different times of the day. Morning was the worst for me. I even tried taking them at different times during the evening meal, singly (spaced out) and then all together. After dinner, all together, with milk was the winner. I guess it might be different for each of us, and it’s a question of finding the best individual approach.

[MareeM]

I am on cycle 20 of 24, Venetoclax while working on my bloods has been cruel to my antibodies, my IgM, IgA etc levels have been hovering just over 0. I have been on SCIG for 18months now. I have terrible nausea and diarrhoea if I take the Venetoclax in the morning however after switching to bedtime I seem to sleep through the nausea and while still having Diarrhoea it isn’t as prolific.

[Fastbike14 in reply to MareeM]

Thanks for your reply. I've also been advised to take my Venetoclax at night with a proper meal, thanks SofiaDeo, and it's good to have it confirmed that it's helpful

[roszika]

I was on v and R from April 2019 and 3 weeks before the 2 years of my treatment was up-that is in the March of 2021 I had such bad nausea which I had continually anyway I asked my specialist if I could stop and I did stop anyway I have been in remission since

[Fastbike14 in reply to roszika]

Hi, I've another 3 months to go. So good to hear you're in remission

[roszika in reply to Fastbike14]

Wishing you the same luck I have

[Fastbike14 in reply to roszika]

Thank you

[MN1999]

After about 13 months on V gut issues flared badly plus increased joint and muscle pain. The worst was diarrhea 3 to 4 days a week. Taking V with a relatively early supper with fat plus avoiding processed food and especially gluten, helps somewhat. Home made sourdough bread has become a mainstay. Now, at nearly 16 months in the digestive problems are down to about once a week. I have lost a little weight unintentionally so that's something to think about too. This seems to be a personal journey for many of us searching for what our bodies need and can tolerate.

[Fastbike14 in reply to MN1999]

Thanks for your reply. It seems strange to say that it's heartening that someone else has had the same problem as me! It's also encouraging that you have found a way through to managing this distressing side effect. CLL Consultant conversation tomorrow and first meeting with rectal specialist Wednesday to rule out other causes. Stay well regards

[Big_Dee]

Hello Fastbike14

I had vomiting, diarrhea and nausea while on Venetoclax and still having bouts of vomiting and diarrhea 6 months after finishing Venetoclax. I had my stool testing last week and all negative. Did an ultrasound last week to check for gallstones and liver. Whereas my issues were manageable, it would be nice to have some relief, sure you feel same way. Blessings.

[skipro]

Awe that’s a hard challenge.

My diarrhea was severe for a few months. My doc suggested Imodium on occasion.

then I developed a pattern of constipation, followed by diarrhea.

Ultimately, I have had relatively decent, but not perfect function by adjusting the triple combo of Metamucil, Senna and Mirax until i reached a relatively steady state of 3 loose but shaped BM per day.

God bless and good luck

Skipro