venetoclax and nausea/acid reflux

[puppy43]

Hi to the CLL community

Has anyone experienced acid reflux/ gerd whilst taking Venetoclax?

I am coming up to Cycle 4 of Obin which I tolerated very well , but have now been taking my 400mg of venetoclax for 3 weeks and have developed acid reflux/ gerd.

not had anything like this before and was ok taking the lower dose up to 200mg, but now I

am beginning to feel less well on the 400.

Anti sickness tablets are helping and taking tablets with food as well, but am considering when I

see my doctor asking about nexium/ omeprazole etc as this is starting to become a problem .

Any advice please would be gratefully received

best wishes to all

Puppy43

[skipro]

I had Acid Reflux before Venetoclax but not I have been on the 400mg for 2 months and take Pantoprazole daily plus Pepcid 40 mg twice daily.

I do NOT lay down for at least an hour after taking Ven and always take it with at least a 350 calorie meal or snack.

I no longer have the Acid problem.

The nausea is becoming well controlled with eating something but occasionally I still take the nausea pills

My bowels have been a disaster, cramps, constipation despite eating tons of fiber and taking all sorts of stool softners and mild stimulants. I've gained weight as well.

Good luck and God bless

skipro

[puppy43 in reply to skipro]

Hi Skipro

Thanks for your reply and the tips I do try to make sure as you said that I eat something with the pills I can’t imagine taking them on their own

I haven’t tried Pepcid , but will look into that and have now got omeprazole daily to take before bed .

Like you my bowels aren’t great either and I pay a lot of attention to my diet . I go from one thing to the other ,

but do have diverticulitis as well .

Trial and error I guess , but it’s hard some days as you don’t know how you will feel

Good luck to you and hope things improve with time

Puppy

[Classicaljazz in reply to skipro]

A side effect of Zofran can be constipation. It may help to back-off of it as much as possible or maybe try other remedies for nausea.

[puppy43 in reply to Classicaljazz]

yes I don't need any more constipation or other digestive issues

thank you Classicaljazz

[SofiaDeo]

I ended up taking the Venclexta pills exactly 1/2 hour after eating a late afternoon meal that included mixed vegetables with some butter. I needed the mixed vegetables/butter combo, taking the pills after finishing (not during or with) the meal, and I had to back up my dinner from around 6-7pm to 4pm. I needed to finish dinner by 4:30pm, take the pills at 5pm, and *not eat any food after* or I had GI upset. It took mmmm maybe 6 weeks to figure this out after ramp up was finished and I could move my Venclexta dose to the afternoon, I needed AM dosing during ramp up testing.

Perhaps monkeying a bit more with your food and times will help, instead of adding another pill. And at least a few people here tried food without fats, and that worked for them.

[skipro in reply to SofiaDeo]

Hmm

I take the Ven while eating, maybe I'll try it 1/2 hour after.

Thx

[Poodle2]

I started having similar issues around cycle 4 as well. My consultant prescribed lansoprazole but I really didn't want to take any more drugs so didn't take them. I started taking the drugs (V) in the evening instead of morning, at first after dinner, around 6pm but I then tried to take them much later, like 11pm and that worked the best for me. I also stopped eating spicy food as it seemed this would cause the issues almost every time I had it. Try to take the tablets at a different time and see if there are foods that might make it worse. It was really unpleasant and actually sometimes painful if I can describe it as such, kept me up many times at night. Hope you find some relief soon.

[puppy43 in reply to Poodle2]

Hi Poodle2

I know what you mean about taking more drugs as we are already full of enough toxic

medication , but it does seem to be working for the CLL .

I think as you say the timing is essential. My consultant wouldn't agree to me splitting my dose into 2 and 2 over a couple of hours which is fair enough so I have now changed to lunchtime which suits me better as I couldn't eat enough in the morning to not feel ill, but like you spicy is out and loads of water as well is essential although I am beginning to dislike water intensely haha!!

thanks for your advice and I hope you continue to keep on top of the symptoms best wishes

puppy

[trenaleigh]

I had to take Prilosec on Venclexta and my dosage was reduced. I had come to a great blood level that stayed good so I ended up being taken off it because of stomach issues and acid reflux. However, Venclexta has done a great job in my CLL journey. I think I’m extra sensitive with stomach and acid issues.

[puppy43 in reply to trenaleigh]

Yes i think I am extra sensitive as well it's lots of people's weak spot isn't it.

I just try to eat healthily with the occasional treat and not drinking too much coffee which I love.

I have a friend with a hiatus hernia and she says dairy always sets off her reflux so maybe oatmilk or soya might be a good idea? trial and error I guess

best wishes and keep well

puppy43

[Tangolover]

In the beginning of my V treatment, I had much acid reflux. That has leveled off now and it seems that the lower gastro problems are more problematic. I also have diverticulitis so that is always an issue. Hope you feel better soon!

[puppy43 in reply to Tangolover]

Diverticulitis is a nightmare i didn't even know i had it ( rather like CLL) but it has caused me so many problems . I was meant to be having a resection ,but consultant decided not to operate as I was about to start treatment an he thought the risk of bleeding was too high

always something isn't there, but on a brighter note my bloods are really good

best wishes

puppy

[CCgroup]

I have been taking one Omeprazole 20 mg each day for many years and it completely stopped the gerd and acid reflux. I've been on ibrutinib for 4 years, and there is no conflict.

[puppy43 in reply to CCgroup]

That's brilliant you must be pleased the Omeprazole is working . I didn't know you could take it for long periods, but.I guess if no conflict between medications then why not

best wishes

puppy

[CCgroup in reply to puppy43]

I hope it works as well for you. I'm certain it will, and fairly quickly too.

[Big_Dee]

Hello puppy43

After one month into 400 mg of V, I started having nausea, diarrhea and vomiting about once or twice a week. I take Pepcid and Omeprazole daily, although the acid reflux is well contained when in CLL remission. I take my V after meal and glass of milk seems to help me. Blessings.

[puppy43 in reply to Big_Dee]

Hi Big_Dee

that's interesting that the reflux is well contained when in remission .I did wonder if when you stop treatment these side effects dissipate or you are stuck with them forever.

not had any remission yet, but hoping next year things will improve when treatment finishes.

Haven't tried pepcid is it available in the UK ? maybe under a different name?

Blessings to you

puppy

[Doggoneit101]

Are u drinking enough water? I didn't one time and BOY I had heartburn for hours! I would flood the water if your not already doing that. I always took mine right after dinner. Also try eating dinner earlier in the evening to digest food before bed. I also cut all spicy, fried and acidic foods. Omeprazole does do wonders though if all else fails.

[puppy43 in reply to Doggoneit101]

really good points as i know the first time it happened I was sleeping flat and that was very unpleasant so now raise up my pillows and that is more reliable.

I will certainly try and eat earlier as going to bed on a full stomach is not a good idea.

Omeprazole seems to be the wonder drug everyone recommends so thank you

puppy

[splashsplash]

I found wearing travel sickness wrist bands helped with the Veneoclax nausea. They issue them to sailors in the navy and I've found they work for all types of nausea, not just travel sickness. Plus no side effects.

[puppy43 in reply to splashsplash]

What a fabulous idea I used to use them for the kids when in a car so will give them a try defo

Can't believe I didn't think of them earlier and anything that isn't another drug has got to be good . No side effects is fantastic

thank you splashsplash

[fraxus1]

I'm doing Obi+Ven in an early intervention clinical trial, starting in June. I had some tiredness & weight loss after each OBI infusion. After the last OBI (late October) I also had diarrhea for a few days after, which I attributed to OBI. However I continued to have diarrh' several times a week thru November (cycle5 for VEN). Imodium helps. At cycle 6 my PA suggested one patient swears by peanut butter+VEN. That really helped (almond butter for me) for abt 5 weeks, then more diarrhea plus strong heartburn and sometimes fatigue. By fatigue I mean - must go to bed for a few hours after being up for <12hrs ! I'll start cycle 8 in a few days - so 16wks to go. So almond-butter, gaviscon, and imodium are my regulars.