I, too, suffered gastrointestinal issues when I started the ramp up of Venetoclax and for several months after. I would take the medication right after breakfast, and a few hours later would feel nauseous and have gastro upsets. I already suffer from IBS, so the medicine just made things even worse. However, after a few months, the nausea slowly subsided as did the tummy upsets. I don't know if it helped, but I still drink at least 56 oz. of water a day to try and stay hydrated. I also began eating yogurt every morning and taking a prebiotic/probiotic that my doctor approved. I hope you begin to feel better soon.
Puppy, I was on calquence last year and added venetoclax to try to get to mrd negative and off all drugs. Venetoclax also caused stomach and neutropenia problems for me.
The neutropenia was manageable with injections to boost neutrophils. The stomach problems became intolerable, although probiotics and a nexium type drug helped some.
I ended up stopping venetoclax because I was doing well on calquence alone and the stomach problems would not relent. My problem was excess gas that had me belching all day with loss of appetite. They eventually diagnosed an h-pylori infection which may or may not have been related to my meds or cll.
I'm doing much better now. My doctor was never quite sure if venetoclax was the source of my stomach issues, they did start soon after I started venetoclax. Once the infection cleared we discussed me getting back on venetoclax but I was doing so well on calquence alone it we decided it wasn't worth the risk .
I am not sure that me sharing my experience is of benefit to you, I sure hope your stomach gets better.
Sharing your experience is very helpful so thank you.
I have the gas issue as well and have been given omeprazole which I believe is similar to
Nexium and this does help, but I still have problems most days. I am convinced it is the venetoclax as the problems started with an hour or so of taking the 400.
i am glad you are doing much better that is encouraging and long may it last.
I may ask my consultant if i can try going back to 200 and stablising for a while.
Suffered with gastrointestinal issue too, terrible stomach cramps (they were actually as bad as contractions) and diarrhoea which brought relief. It was getting worse as the treatment progressed - from once a week to three four times a week. I think it was the worst about half way through. It eventually improved right towards the end of my treatment, in cycle 11 I think when I would have it max once a month. I eventually took my venetoclax really late - around 11pm and cut down on all spicy food. This seemed to have helped. Definitely taking it in the evening helped me.
i have heard that taking the tablets late can help or with your evening meal .Sometimes it is very inconvenient during the day if you are working or out to take the medication and trying at night might be the solution.
Many thanks for your advice this forum is so helpful.
Are you taking them with dinner? I eat half my dinner then take the pills and finish eating. I haven't had any issues doing it this way. It was suggested to me when I first started taking them
how nice to hear from you I do hope you are keeping well and enjoying life?
yes it seems that with dinner or later in the evening might be a possible solution I will certainly give it a try. i found the obin easy and breezed through with very few problems
and thought the Ven would be the same, but sadly not.
At first I was told to take them in the morning, but that was a disaster .
Thanks for your help it's good to hear from fellow CLLers who have been through these medications.
If you are on a reduced dose consider eating something fatty with the venetoclax. It will improve absorption. I noticed it in the drug package insert when I started it. Also, a research nurse at an appointment a few months back suggested it to me.
Sorry. No suggestions for stomach upset.
How big are your meals? Are you eating something substantial?
I frequently cook steel cut oats with whole milk and blueberries. A solid meal with plenty of fat with venetoclax and other medications I take in the morning.
Hi Puppy43. I too had gastro problems on 400mg dose and found a lot of helpful and diverse advice available in past posts. My body finally settled when I changed the time for taking the meds to after dinner, increased my water intake and avoided fatty foods. I guess everyone is different but that worked for me. I also stocked up and when necessary took anti nausea meds (ondansetron). I have recently finished the meds and am feeling pretty good. I hope all goes well for you. All the very best.
As you say a lot of diverse advice out there and am trying lots of different things to find what suits me . Am taking anti sickness and they do help for sure , but have tried taking tablets with dinner , but woke up in the early hours feeling awful so now it’s lunchtime for me.
It’s great to hear you have finished your meds and feeling pretty good it’s so encouraging when things go well and I wish you all the best
As with most issues with gastrointestinal issues, what you are eating is also important. I'm on venetoclax and diarrhoea can be an issue. I noticed it was worst when I ate certain foods. Not being terribly disciplined in cutting these out it became more complicated because sometimes they had no effect, I came to notice it was more about combination of food.I thought about keeping food diary and recording bowel movements. I've managed work it out without doing that.
Drinking water is a key part of the therapy, its required to help remove detritus from dead cells from the blood. Venetoclax is so good that in the trials there were a few deaths from tumorlisis, basically the bodies renal system can't remove the chemicals from dead cells quickly enough. Water helps you pee more frequently and keep the blood clean.
So interesting to hear about the water intake I know I have been told to drink about 1.5 to 2 litres a day and you have explained why which is very helpful . I only have one kidney anyway so always try to keep my water consumption up. Thank you so much for the help
I'm on V and R as a second line treatment. I completed FCR 4 years ago. I have always had problems with neutropenia when on treatment and this is no different with V and R. I have to inject Filgrastim weekly. I completed my 6 months of Rituximab a month ago, having to pause it for 10 days because of neutropenia. I see my consultant again in 10 days and She said that she would probably increase my Filgrastim dose if my numbers are still low. I do get gastro upsets but manage this by taking Venetoclax at lunch time with a meal and plenty of water. Good luck to you.
Yes neutropenia can be a recurring issue and like you have had injections which do seem to work. I stopped the venetoclax for 3 weeks and the neutrophils went up considerably , but am sure they will drop again with the 400 . I am doing exactly the same as you and having the Venetoclax at lunchtime which hopefully I can manage in the future.
I hope you continue to do well with your second line treatment and reach deep remission . Venetoclax has brilliant results so I know I must persevere
If you can tolerate 200mg, you could ask about splitting the dose. 200mg early or lunch and 200mg later with evening meal.
Definition of a "meal" is 512 kcal - 750 kcal.
I've had no problems taking them at breakfast, cereal, milk, 2 toast with butter and lemon curd / lemon and lime marmalade. Instant coffee made with half milk / half water. 1/2 pint of whole milk in total.
I was on Venetaclax for two and a half years. I found the nausea was helped by always taking the V on a full stomach and by wearing Travel Wrist bands (for sea sickness or actually any type of nausea).
About 3/5ths of the way along my V dose was halved from 400mg to 200mg which also helped with any residual nausea and tiredness.
Taking V at lunchtime with my main meal and plenty of water seems to be best way to go for me.
So interesting to hear about the wrist bands certainly one to try . Yes am going the lunchtime route for sure it might be easier than breakfast, but I know everyone has to find what suits them best to get through this treatment .
Was your doctor happy to let you halve your dose from 400 to 200 . I would like to this as when I as ramping up and on 200 I felt good , but the 400 has been pretty tough I was told it can lessen your chance of deep remission if you stay on 200 , but on this forum have heard different opinions .
Hi I’m now back on the Venetoclax having had a six month break when my Leukaemia rapidly started up again. The V is being ramped up over a month ultimately to 200mg and I will probably have to stay on that dose as a maintenance regime. V does seem to work for me as my cells are already way down.
Is your interest as a patient, carer or medical person?
Thank you. See my bio, full story is there, but in short I’m 15 years in and on fourth regime which is V on a mono maintenance basis. Oh, and life is good 😊
I always take mine in the morning with all the other tablets I've been prescribed and then I eat a banana. About half an hour later I have cereal. So far I haven't experienced nausea or gastro upsets. I do hope things get better soon.
How fantastic I am glad you have found what suits you best it makes life easier I’m sure if you can the meds out of the way early in the day . Bananas are great aren’t they so filling and nutritious and you don’t have to cook them !
With queasiness in most mornings, I always found it best to take the four pills about half-way through lunch. There is better absorption if taken with some fats in the meal-- so a peanut butter & jelly sandwich or else a cheese sandwich, etc. worked well if I was on a long drive that day, etc.
I seemed to get sleepy a couple hours after the venetoclax, and a 15-20 minute nap in the afternoons helped a lot. A recent news article has touted the benefits of quick naps for all people, so I now feel proud of myself for napping as a good self-care habit.
Zofran can help with nausea, especially the 8 mg ODT that you melt on your tongue and works quickly, or the 8 mg tablets that are made to swallow work well for anticipatory nausea.
Imodium can help with diarrhea, but should not be taken more often than the directions on the box.
The good part is that for most of us this is a time-limited therapy. It is very nice to be well now and not have to take any medications for CLL for the past year and hopefully for some time to come!
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