Hydration and Venetoclax : After completing the... - CLL Support

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Hydration and Venetoclax

KLWC profile image
KLWC
10 Replies

After completing the ramp up to 400mg and hydrating with 56-64 oz per day, did you continue with that kdvel of hydration every day!

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KLWC profile image
KLWC
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Panz profile image
Panz

I am on just Imbruvica 420 and 119 oz. of water everyday....it is doable but a challenge for a person who isn’t fond of water. In addition I treat myself to 12 oz. of coffee or tea as a reward! 🙏💕☘️😍

thb4747 profile image
thb4747

I’ve never liked water though I try and drink as much as possible. However, a couple of glasses a day is my limit. I drink lots of tea and usually have a tomato juice with lunch. I seem to be doing ok though. Having a bone marrow biopsy on Tuesday to establish whether Venetoclax has got me into remission. I only take 200mg daily but that seems to be working for me.

KLWC profile image
KLWC in reply to thb4747

Good luck on Tuesday with your biopsy, hoping you are in remission! How long have you been on Venetoclax? Did you take rituxin as well?

thb4747 profile image
thb4747 in reply to KLWC

I started Venetoclax almost a year ago - no rituxan with it. I’ve had trouble with side effects so, for the past 4 months, I’ve been taking 200 mg daily and tolerating it well. I had a CT scan 2 weeks ago and the results were very pleasing. The BMB is to verify what they think, i.e. I’m in remission.

tonyfrench profile image
tonyfrench in reply to thb4747

I had a Bone Marrow Biopsy Friday(two days ago), request the "don't care" shot, it's two days after and today is the day where it is really hurting, just trying to give you a "heads up" Good luck in your journey, I get my results tomorrow from the Genomic testing and BMB

thb4747 profile image
thb4747 in reply to tonyfrench

This is my 3rd BMB thanks Tony. I tolerated the first without any problems but found the second really painful. This time I’m having an anaesthetic.

tozer profile image
tozer

Yes I found maintaining hydration is really important. I try to drink at least 2 litres a day and if its hot (I am in Sydney) certainly try for 3. I notice the difference when I am well hydrated (and I allow myself one glass of red wine a day!)

Lily_Pad_Master profile image
Lily_Pad_Master

I was drinking a U.S. gallon per day for the first month on Venetoclax. Then, I got a new job where it isn’t possible to tote around that gallon jug. My consumption is down because I can’t measure, but I’m always drinking water. I certainly drink more water than most people do, but not a gallon/day. No problems. Total lay person thinking: The high volume of water is needed to flush the remnants of the cancer that venetoclax destroys and leaves floating about in the blood. Once the tumor burden is down (say, as verified by bloodwork and bone marrow biopsy), then there’s probably not quite as critical a need for that same amount of water. But, if you’re like me, you’re also on other meds, so hydration remains a necessary part of good health.

Smakwater profile image
Smakwater

Absolutely KLWC,

I have been on the Venetoclax 400 mg dose for 3 months. I can say that it is consistent for me to notice that when I consume less than approximately 60 ounces of water in a day of moderate activity that my physical strength, stamina, and mental clarity decreases. In addition, I also feel a bit gooey.

I have noticed the same conditions occur with more physical activity, or significant increases in caffeine intake without increasing the water intake respectively. With higher level activity or additional caffeine, I have better results drinking 80 to 120 ounces throughout the day.

I rode a bicycle 26 miles on a warm day having drank only 64 ounces. I became nauseous and weak. The next morning prior to an Obinutuzumab treatment my blood lab showed creatinine out of range, The physician set me up for a hydration IV immediately.

Venetoclax requires much from your kidneys which need water to stay friendly.

No short cuts for those of us cutting it short.

Drink up!

JM

BeckyLUSA profile image
BeckyLUSA

I agree with Smakwater. No shortcuts with these strong meds. I am on Ibrutinib and Venetoclax and drink 90-110 oz (US) per day. Less than that and side effects start getting worse for me. I too, am not crazy about water, so I do mixed drinks. Mostly water with a little bit of juice mixed in, cranberry or, maybe a little lemonade mixed in. I am not much of a soft drink person, but do have a favorite drink that I fix once in a while for a treat. 12 oz of water, 6 oz of unsweetened cranberry or cherry juice and 6 oz of ginger ale. I drink decaf iced tea and decaf coffee so I do not have to drink extra water to counteract the caffeine.

BeckyL USA

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