Venetoclax Update: I posted the other week that... - CLL Support

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Venetoclax Update

Jooby59 profile image
12 Replies

I posted the other week that I was suffering from bad nausea after taking Venetoclax. I moved to taking them an hour after dinner and from the first evening I was cured!! As usual your advice was brilliant so thank you very much. x

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Jooby59 profile image
Jooby59
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12 Replies
Newdawn profile image
NewdawnAdministrator

Great to hear Jooby. It’s always worked for me! 😊

Newdawn

Canuck901 profile image
Canuck901

Excellent, yes I hear that with a lot of these medications you need to have food in your stomach or you may have gas and stomach issues .

81ue profile image
81ue

I'll have to try after the meal as you describe. I've been taking it with food and suffering with nausea looking for sugar free candies or anything after the dose to help deal with the nausea. My worry was that if it was taken on an empty stomach that it might cause ulcers

Edit: For two days now I tried this method. I was not sure about waiting an hour, so I waited 1/2 hr after eating both days to see if that was enough and took my dose and so far there hasn't been the dreaded nausea. I looked up online how long food stays in the stomach and the answer was 2-4 hours depending on fiber content of what was eaten, so I'm still taking venclexta with food remaining in the stomach 1/2 hr after I ate. I will let my doctor know what I'm doing. Goodbye nausea!

guzzifan profile image
guzzifan

I have been on Venetoclax - just came off it after 2.5 years because of disease progression.

The data sheet I have for the drug says to have it with food because it is much better absorbed with food, and even more so with a fatty meal, than on an empty stomach.

Obviously the timing will be a compromise for you, but you need to keep it as close to the meal as you can or you won't be getting the full benefit of the drug.

Cheers, Jim.

in reply to guzzifan

Hi Jim. I know this an old post but had to inquire about your situation. Sorry to hear of your progression. I really had high hopes for the venetoclax, so I'm kinda disappointed it hasn't helped you. Are you now on any other type of treatment?

guzzifan profile image
guzzifan in reply to

Hi Trieshi,

I was on Venetoclax as part of a clinical trial - not with Obinutuzumab, just V on its own. Clinical trials show that V + O is more effective than V alone, but I had to take whatever I could get, as I'd already failed FCR which was the only treatment funded in New Zealand at that time (if you don't count Chlorambucil, which is pretty useless).

I only ever got a partial remission on Venetoclax, but I was on it for 2 1/2 years before the CLL progressed enough to require another treatment. I then went on to Zanubrutinib about 7 months ago. I could feel the effect after 2 days, and it has been like magic so far!

V is good for most people, especially when combined with O, so it is extremely likely that your family member will benefit from it, especially if it's their first treatment. Multiple treatments seem to select for resistant clones of B cells that become more and more resistant, so it's good that you're hitting it with a very big hammer to start with. As you will have gathered from others, a reaction to the first infusion of O (or other anti-CD20 antibody) is common, and can almost always be controlled by slowing the infusion right down. Most of my Rituximab infusions took at least 8 hours. It will all work out well in the end.

Good luck! Cheers, - Jim.

in reply to guzzifan

Thanks Jim - wish you sustained health !

Flute117 profile image
Flute117

Good to know! I’m on Obinutuzumab infusions and will be adding Venclexta in a couple of weeks. I knew it should not be taken on an empty stomach - I will try after dinner. I had a lot of stomach discomfort and gas after my first two days of infusions - perhaps from the dexamethasone (steroid) each time. Looking to avoid future stomach issues. Thanks for this info, Jooby59.

Jooby59 profile image
Jooby59 in reply to Flute117

I was taking after breakfast but think that I never ate enough to line my stomach! It’s now a week on my new regime and feel absolutely great! Good luck. x

Lakeviewg profile image
Lakeviewg

Good to know, so glad to hear that simple change worked for you!

Mike

Smakwater profile image
Smakwater

Good Show Jooby!

Ellieoak profile image
Ellieoak

Good for you! I’ve been taking Venteclax every day after dinner. And I have been fine. Stay safe! Anna

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