This week I started the final increase of venetoclax, 400mg. I had few side effects on previous increases. I am now experiencing mild stomach pain and nausea starting an hour or two after taking my meds in the morning. For those of you who have been on this treatment before, will these side effects go away with time? Should I try to switch to taking them at night? I have been prescribed comparing for nausea, but really don’t want to take it if I don’t have to. I truly am surprised by this reaction to the increase as all the other increases went so smoothly. Thank you for any tips or reassurances you can give me!
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Sorry to hear that. I had really awful stomach ache. It was actually more painful than contractions during labour - but luckily it never lasted more than half an hour and I usually needed to empty my bowels afterwards - I had a bad diarrhoea from the medication - it was really bad in the first couple of months, it actually got worse as I continued taking V. It stopped around cycle 11 but before that it was less frequent than the first half of the treatment. The diarrhoea restarted after I finished V and continued for a couple of months. It doesn't mean it will be the same for you though. I seemed very sensitive to the drug, every increase during the ramp up caused fevers, which meant A&E - sometimes for one night only, sometimes for a couple of days... if it has been smooth sailing for you up until now, it might be just your body adjusting and it will settle. I did start taking it just before bed time and that did seem to help me. Hope you continue doing well, it is a great treatment. If you continue with the nausea, ask the team for some drugs to deal with it. Don't suffer.
Thank you for such a quick response. After hearing your story I won’t complain anymore. The diarrhea sounds awful. It is such a wonderful medication. My counts were normal for the first time in three years. 😊
Oh no! Complain any time! You are going through a lot and your body is fighting cancer, processing the powerful drugs and adjusting to the medication. To those around us it might look like not much is happening to us but it is the complete opposite. It honestly is a miracle drug, I felt so sick before I started and felt better immediately, after the first O infusion. Hope you have an easy ride ❤️all the best.
It may ameliorate over time as you become accustomed to it. I’ve had to reduce my dose of venetoclax to 200mg daily as the stomach issues didn’t improve. That is an option.
My issues were a little better when I moved from taking the meds in the morning to the evening, after dinner, and with a glass of milk.
I’m a bit over a year past completing two years of Venetoclax and bloods are all now ok.
So congrats on getting to 400, it’s worth perseverance !, but I’m sorry you are having issues.
For the first few months I had nausea also (no stomach pains tho), eventually (thanks to suggestions on this site) after a few different eating/med variations, I solved that by taking the dose with my evening meal.
I had tried a few anti nausea meds that didn’t work for me.
If you are going to try taking Ven later, you should try to not be more than 8 hours late, that is considered a missed dose. That may mean taking one dose at lunchtime or moving one mealtime to an earlier time.
Shifting a dose from evening to morning should be transitioned slower as it increases the drug concentration, I would suggest about 4 hours earlier each day.
"A meal" is between 512 Kcal and 750 kcal, that gives between 100% and 133% uptake. If Ven isn't taken with the meal, then Ven should be no more than an hour before the meal or 2 hours after.
Thank you. I was wondering about how to make the switch, and of course it is the weekend when there isn’t a nurse available for advise. Today I took my meds about four hours later than normal and will plan on gradually taking them a bit later. I appreciate your advice!
Thank you for this advice, Charlie Girl. I have heard of people taking the meds with their evening meal, but that still would make me sick in the early evening. I don’t want to start a habit of eating a lot before bedtime. A banana is a perfect idea…not too calorie ridden and a healthy choice. I think I will try this!
I moved mine to dinner time because I ate a more calorie dense meal at that time. That helped the nausea. I did have issues with diarrhea throughout treatment which was more manageable after working with a dietician. I highly recommend working with one if you have access through your treatment center. It was one of the perks at mine that I was unaware of until I needed it.
My doctor suggested taking it at nighttime so I’d be asleep during the worst and that worked for me. I found that 9:30pm was a good time. Not before (too close to dinner) and not after. You have to change the timing slowly (I forget how much per day??). I also took Zofran for the nausea as needed. It really helped.
Thank you for this advice. I have compazine available, but when I read the side effects of it nausea was one of them! Go figure. My husband was on chemotherapy and he always said the compazine made his feel worse. Good to hear that zofran is a possible option.
I am similar to you in that I didn’t want to take any additional meds to help with nausea from Venetoclax. For me, taking it after my lunch meal with some fat helped - big glass of milk, spoon of peanut butter, half an avocado, or ice cream (my fave) made all the difference.
Sorry to hear about the side effects. I'm my case, they did not improve. I found taking the medication after dinner was best because that was my biggest meal. However I did take Zofran (Ondansetron) for nausea before taking the V. I did this every day and it helped. Sometimes I would still feel nauseous and then I would take a Compazine for nausea and go to bed. I was not hesitant to use any additional medications during treatment as I figured I needed all the help I could get and I deserved it. The only downside to taking the V at night is that sometimes I would wake up in the middle of the night with diarrhea. But since I was working during the day, I thought that was better than having that problem during the day. Good luck with your treatment. And consider taking advantage of the comfort medications. There is no reason to suffer more than you have to. You and your body are going through a lot.
M-m-m-m, well I had diarrhea about 2-4 times a week in the afternoons during Venetoclax treatment. I also had nausea occasionally, for which I took nausea medication which was effective if taken at onset of nausea. I vomited about every two weeks during treatment, which was unusual for me as, I vomited maybe 5 time in my whole life. I found that taking 400 mg of Venetoclax right after noon meal helped some. Milk helped to. I am one year post venetoclax and still have abated diarrhea, nausea and vomiting, but it is getting better all the time. They say it takes about venetoclax to leave your system. To me it is still worth it. Blessings.
Thanks for this info. I hope that your symptoms improve as time goes on. This reminds me that they did say some of the side effects might not go away. Regardless, this med is totally worth it!
I have been taking venetoclax since November. I was told by my CLL specialist to take the medication with a high fat meal of approximately 50% to enhance absorption of the active ingredient. I eat this meal at lunchtime. I have had no problems with stomach upset eating at this time. Some examples of my meals include peanut butter and jelly sandwiches (peanut butter consists of about 70% fat), high fat Greek yogurt (10% milk fat), skinless and boneless sardines in olive oil (sounds yucky but you get used to the taste), avocado, and hummus with chips and carrot sticks with olive oil added to the hummus. Enjoy!
I had similar symptoms but not everyday. I tried swapping cereal/porridge etc for egg/beans on toast and that helped. In the end my haematologist suggested splitting the dose so I take 200g after breakfast and 200g after dinner. I hope this helps.
This is interesting. I have an acquaintance who also had to drop back to the 300mg. There must be some tipping point with the 400mg. I am so happy to hear of your remission! This gives me hope.
I took whole milk yogurt with my dose to buffer my stomach and add probiotics. If you are dairy intolerant, coconut yogurt is delicious. Any high-fat food helps. My PCP recommended Glutathione (liposomal) to increase liver detoxification, that made a huge difference for me.
Several people have suggested the whole milk yogurt. I love yogurt and will try this. It probably will be a little more flavorful than my low-fat Chobani!
I had violent vomiting on the very first day I went up to 400 mg. I was miserable. I kept trying to adjust it to make sure I eat enough food with it move the times around that I took it, it seem like dinner time was the best time for me to take it and I had to take Zofran a lot when I felt that nausea start to come on and lay very still for about an hour. After about a year of this, I went down to 300 mg and it was much better. But here the last month I've had a couple more times of feeling that sickness with the 300 mg. I am hoping to get off of this medicine by the end of this month. I had an MRD test in June, which was showing no leukemia cells and I'm getting another one in a week and a half. If it shows the same, I will be discontinuing it, and I am really looking forward to it. I take Venetoclax only I never took obinatuzimab.
I took mine at 6:00 PM and had relatively good results. Obviously, everyone is different but you might try that. I never took anti-nausea medication and continued that schedule for the year. Good luck, Randy
Thank you, Randy. I have been increasing the time between doses and tonight I took my meds after dinner (anabout 6 like you suggested) and no nausea or stomach issues. Yay! I tend to eat more in the evening than at breakfast, so this must be the key.
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