Taking Venetoclax am/ pm

[Packrat]

Hi all. Sorry if this has already been discussed. I've been on Venetoclax since last May. I've been taking it in the morning with food and do ok, but about 1-2 hours later I just feel a little cruddy/nauseous for awhile, then I'm fine. I'm thinking about switching to taking it at night. My question is, for those that take it at night(before bedtime) do you still get that cruddy feeling and does it affect your sleep? Do you take it with food?

[Newdawn Administrator]

I always took my Venetoclax after my evening dinner which was my largest meal of the day. Usually about 6.30pm.

I was very fortunate in never experiencing nausea with Venetoclax but experiences differ. It needs to be taken with or after food however.

Best wishes,

Newdawn

[Packrat in reply to Newdawn]

Thanks Newdawn. I may try switching. My dinner time is a more inconsistant time than breakfast. Don't know if that matters.

[Newdawn Administrator in reply to Packrat]

It didn’t matter for me. I took it whenever I’d eaten but tried to keep it within a 2 hr span. Obviously a bit of an issue if you’re dining out later but we tend not to eat too late anyway.

Newdawn

[Hoffy in reply to Newdawn]

I did the same in the evening.

Hoffy

[scryer99]

I have some achiness with my venetoclax-analogue (I'm in clinical trial) and zanubrutinib; I can definitely tell an hour after I've taken it that something is up. But it's not severe enough to interfere with sleep for me, and I take my zanubrutinib at least morn/eve with no sleep issues.

I've actually monitored sleep quite closely to manage fatigue and because of a few other health issues on my plate. I sleep better now than I did before treatment. Most of that is "taking care of myself while sick", but it's certainly possible for you as well.

[Pacificview]

Hi Packrat

I have tried taking it at all times of the day. If I took it at dinner time. I found that by the time I woke up in the am I felt horrible. It seemed to me that I ended up very dehydrated.

So I switched back to the orgional time frame of taking it when I eat breakfast. I drink a glass of water with it.

I sleep better at night and have to drink less water. I don't wake as often for pee runs. I feel better in the mornings when I wake up.

All that said, the O & V regimen has not been easy for me. As far as feeling well while taking it. Nausea, body aches and pains, some edema in lower legs that comes and goes, hangover feelings in the am upon wakening. Weakness and the inclination to just chill.

I have stuck to taking it in AM as it works for me. I like to make sure I am awake for any side effects the regimen throws at me. By the time I go to bed at 11pm any side effects are minimal. As I dealt with them within the day or early eve.

I have a little basket with all my medications for side effects and I use them as needed.

[Horatio2]

I take it right after breakfast, and like you, within a few hours, I feel yucky. I am on a trial, and I also take Acalabrutinib, which I take before breakfast and before bed. I know I didn’t answer your question but wanted you to know you aren’t alone with the nausea.

[Skyshark]

Food is important for uptake of Venetoclax. For "normal" uptake it's 512 Kcal, about a bowl of cereal with milk and two toast with butter/spread and a jam/curd or a sandwich and an apple. A main meal 750-800 Kcal will increase the uptake but is acceptable. A blowout large meal ~1000 Kcal should be avoided.

If moving the timing of the dose do it in stages. Moving earlier increases the concentration, later reduces the concentration. 3 hours later if moving from morning to evening each day. 2 hours earlier if moving from evening to morning each day.

Speak to your healthcare team, they should be able to prescribe something to reduce the nausea. Beware of self medication, some anti nausea medicines speed up the transit time though the gut which could reduce uptake. Oddly the one they gave me as take home medicine for first cycle was Metoclopramide which does reduce gut transit time. I didn't need it. Others block signals to the brain.

512 Kcal for normal uptake of Venetocalx

[Packrat in reply to Skyshark]

Thank you Skyshack, good information!

[Gradyboy]

I'm like Newdawn, I take it after dinner. I was taking it in the middle of dinner and started getting a little nauseous. I have had great luck taking it within an hour sometimes two after dinner. I feel fine with no nausea. A few times I've forgotten to take it for a few hours after dinner and I just have a small snack, down my four huge pills and it was fine.

[bettyba]

Hi - I felt very much like you, so I spoke with my consultant - who advised me to take it with my evening meal. I did and hay presto - nearly 2 years later and heading towards my finish line with Venetoclax - and just that little conversation changed everything. No more nausea for me. So have a chat with your consultant and try what they suggest. All the bestx

[Kakazi]

Someone told me to eat Cream of Wheat for breakfast to stop that queasy feeling. It worked!

[Packrat in reply to Kakazi]

Hmmm, doesn't sound yummy, but might try it.

[spi3]

Are you eating some type of fat with your breakfast- I cook my hubby's breakfast with butter and also drinking 3 liters of water a day? This helps him a lot

[Packrat in reply to spi3]

Not a big breakfast eater, so when I have something like eggs I cook them in butter. Right now I'm on a cinnamon bagel kick that I slather with butter.

[spi3 in reply to Packrat]

Maybe your Dr can prescribe something for nausea so eventually and hopefully your body gets use to the venetoclax and won't need anything

[The-Man-with-a-Plan]

Packrat:

My sister started taking V before I did. She switched from AM to PM for the same reason you did. Doing this helped her avoid that 'cruddy' feeling.

I've been taking V an hour or two after dinner (usually around 8/8:30 PM) with great success. From time to time, I feel 'cruddy' but I chalk that up to all the other prescription meds I take before I head off to bed.

Good luck finding the right time to take V.

Man-with-a-Plan

[Packrat in reply to The-Man-with-a-Plan]

Thanks, good to know!

[MN1999]

I struggled with nausea that would occur about two hours after taking the V and prefer not to take anti-nausea meds, so tried moving the med incrementally through the day. I have found the best time for me is early evening with a larger dinner. I also space the four pills out through the meal. Spacing the pills through the meal has helped me the most. I had never heard that a larger meal changed the V uptake and wonder if that's a positive or a negative? Finding the right time and combination of foods seems to be an individual thing.

[Packrat in reply to MN1999]

Thanks, yeah lots of trial and error!

[Doggoneit101]

I took mine at night after dinner. Never had any problems with it affecting my sleep. Everyone is different though. Best of luck

[Classicaljazz]

I tried different times and found taking it with lunch was best for me. I would usually get a bit sleepy within about 2 hours after the 400mg and an afternoon nap gave me more energy, almost like having a new day start, to get things done. Also, if I did get nausea or diarrhea from a dose, it wasn't in the morning when I was getting. things done, or in the evening when I was tired and getting ready to sleep.

[casanova]

I switched from am to pm due to nausea and diarrhoea. I took my tablets approximately two hours after my evening meal and had no further issues.Hope the same applies to you if you decide to switch to the evening.

Maureen UK