Drinking water whilst on Venetoclax

[aloneifly]

Little bit confused.

How many litres a water is necessary each day?

I am on day 4 of week one so initial dose.

Do I need to drink copious amounts of water for the whole time I'm on Venetoclax or only just before and after each ramp up?

Thanks

[Canuck901]

All the time 1.76 to 2l a day I believe , flush it through your system

[aloneifly in reply to Canuck901]

So for 2 years I need to drink 2 litres of water per day?

I'll need a portaloo of some sort of I leave the house!

[Canuck901 in reply to aloneifly]

Ask your CLL specialist nurse and Dr as well , they should tell u something similar

[AussieNeil Administrator in reply to aloneifly]

It's not that much - about 8 glasses of water a day, or one glass of water every two waking hours. It doesn't have to be water, just fluids to keep you hydrated. Given the amount you actually need is dependant on activity level, temperature and how much liquid is in the foods you eat, a more useful guide may be to drink enough fluids to keep your urine pale yellow.

Neil

[jijic in reply to aloneifly]

my doctor says it's most important during the ramp-up phase, when tumor lysis syndrome risk is high. after that, you can stick to around 1.5 liters, apparently.

[PlanetaryKim]

I think it's especially important during the 5 weeks of ramp up (not just on the day of each dose increase). But I am still drinking about 7-8 cups of pure water a day. And I am 5 months into venetoclax. So 1.5-2 L per day, every day.

[Sepsur]

If you pee the colour of Champagne - you’re doing it right (apparently)

[lankisterguy Volunteer]

I agree with PlanetaryKim , my medical team explained that the high water amount (56oz or 1.7 liters per day) was important during the dose ramp up.

This is because during one of the weeks of increase, the Venetoclax may suddenly kill off lots of CLL cells, and the high water flow is to make certain all the debris (TLS en.wikipedia.org/wiki/Tumor... ) from the CLL cell die off is flushed out promptly. There are no physical signs or symptoms of TLS, and only blood tests can determine if your Uric Acid, Potassium or Phosphate are high when the cells die.

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Once your ALC and nodes are normal, the water is not needed for avoiding TLS problems, but you should maintain a healthy fluid intake to keep kidneys etc. fully functional. My medical team had no specifics volume target for that.

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Len

[roszika]

Hi. You need to drink around 2 Litres of water the whole time you stay on Veneteclax. I have been on 400mg since May 2019. I found I bought a drink bottle and fill it with water every morning and again at night and have ot by my bedsie if am thirsty during the night. One can also ingest water as coffee or tea or soft drink but if you are on V for 2 years as I am you need to keep up the fluid all through that time.

[lankisterguy Volunteer in reply to roszika]

Hi roszika,

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Do you have a specific reference for your statement "You need to drink around 2 Litres of water the whole time you stay on Veneteclax"

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The other replies and references do not agree with your statement. The need for extra water/hydration is specified during the ramp up period.

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Please see venclextahcp.com/cll.html?c...

VENCLEXTA poses a risk for TLS at initiation and during the ramp-up phase. Changes in blood chemistries consistent with TLS that require prompt management can occur as early as 6 to 8 hours following the first dose of VENCLEXTA and at each dose increase.

Patients should be assessed for TLS risk, including evaluation of tumor burden and comorbidities, and should receive appropriate prophylaxis for TLS, including hydration and anti-hyperuricemics. Reduced renal function further increases the risk. Monitor blood chemistries and manage abnormalities promptly. Interrupt dosing if needed. Employ more intensive measures (IV hydration, frequent monitoring, hospitalization) as overall risk increases.

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Unlike some of the other targeted or chemo drugs, the kidneys are not the primary means of removing the excess drug from your system. Venetoclax is expelled through the colon.

accp1.onlinelibrary.wiley.c....

A negligible amount of venetoclax was excreted in the urine. In summary, venetoclax exhibits a pharmacokinetic profile that is compatible with once‐daily dosing with food regardless of fat content. Concomitant use of venetoclax with moderate CYP3A inhibitors should be avoided or venetoclax dose should be reduced during the venetoclax initiation and ramp‐up phase in CLL patients. Renal excretion plays a minimal role in the elimination of venetoclax.

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dailymed.nlm.nih.gov/dailym... Excretion

After single oral dose of radiolabeled [14C]-venetoclax 200 mg to healthy subjects, > 99.9% of the dose was recovered in feces (20.8% as unchanged) and < 0.1% in urine within 9 days.

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Len

[harley2018]

It seems like a lot but not really. Sit out 4 16.9 bottles of water a day and before you know it they are gone. Drink one with each meal and you only have one to drink during the day! I hated drinking water and it’s been very easy. Your body will adjust to the extra fluids!

[aloneifly]

Sorry but what's a 16.9 bottle?

[bigunwill2]

A normal bottle of water you would buy. 16.9 oz or .5 liters.

[BeckyLUSA]

Drinking an appropriate amount of water also helps ward off and/or lessens the intensity of possible side effects. The more water I drink, the less side effects bother me.

[mrsjsmith]

Hello aloneifly,

I think as you are in the UK and some of the US volume conversions may have gone awry ! I am sure 2 litre bottles a day will be fine. I know people who set alarms to remind them. Just try to space it out during the day. I am on Ibrutinib and I am terrible at remembering to drink enough. Keep a bottle by the bed and I sometimes add a slice of lemon or lime to make it more interesting.

Colette

[Smakwater]

aloofly,

The instructions that I was given during the O + V trial matched what Neil states - general requirement = 8ea 8 ounce glasses of water evenly spread throughout the day (12 hr).

As CLL lady advised, you should discuss with your doctor. Your activity and environment can influence the amount that you need individually.

I went for a 30 mile bike ride on a warm day without increasing my intake, and choked my kidneys. I became nauseous and dizzy. A blood test showed high creatinine levels due to dehydration.

JM

[prbild]

According to the AbbVie site (venclexta.com), the specific requirements for the ramp-up period are:

"Drink plenty of water during treatment with VENCLEXTA to help reduce your risk of getting TLS. Drink 6 to 8 glasses (about 56 ounces total) of water each day, starting 2 days before your first dose, on the day of your first dose of VENCLEXTA, and each time your dose is increased."

The quick start guide that came with my ramp-up package contains a graphic calendar that says "drink water" on the two days before, and the day of, each dose increase, starting before the first dose. There are no requirements on the intervening days other than to stay hydrated, which is always a good idea.

Paul

[aloneifly]

Thanks for all the replies.

I shall indeed ask when I go back in for my 2 night stay later this week.

As they say in that UK program-

Kee- ep Drinking!!

[Canuck901 in reply to aloneifly]

How’s the Venetoclax ramp up going? Hope you’re doing well

[aloneifly in reply to Canuck901]

Thanks.

Now on 100mg. Seem to be coping ok.

Just a concern that swollen nodes are showing no sign of shrinking and if anything I'm finding more i.e in my groin.

Consultant ordered an excision biopsy of my axilla swollen node just to be sure disease not transformed.

Bea few weeks before that happens and hopefully by then it won't be necessary.

Creatanin slightly elevated so I've got to drink drink drink!