Water or how much water on Gazyva?

[Rico49]

Skyshack and I got into a discussion about how much water are you to drink when on V+O.

I decided to send out my general findings and see if anyone has additional info.

I was unable to find definitive instructions for water and Gazyva.

An AI search on Microsoft first took me to drug .com but it went directly to Venclexta I guess since they are generally given together. When I challenged the result ,AI apologized and said: According to Chemocare, there is no information available on how much water to drink with Gazyva

The Venclexta Medical guide says to drink 56 ozs a day.

I'm going to ask the infusion people next week. I know if you get a transfusion they say drink lots of water. After my first cycle ,only on Gazyva, my BUN doubled and they said I wasn't getting enough fluids. I had been drinking at least 84 ozs a day and I still had to get an iV.

I'm going to keep drinking water. I don't start Venclexta for a couple weeks.

I found this article from Cancer Treatment Centers of America.cancercenter.com/community/...

Interesting rule of thumb. Divide your weight by 2 equals the ozs you should drink. ie: 160 lbs equals - 80 ozs. I weigh 185 so I need to lose some weight or drink 80+ ozs a day and go to the bathroom every hour!😂😂

CTCA were pioneers of treating the whole body. Maybe the best Cancer facility I ever went to in the 90's. This article is about hydration.

[AussieNeil Partner Administrator]

Indeed the official Gazyva site is silent on the matter, perhaps because this monoclonal antibody therapy is supposed to be taken with another treatment drug for which you should be drinking an adequate amount of fluid, plus you have a drink of water with your premeds and you also have IV fluid through your saline infusions prior to and when the Gazyva is flushed out of the IV tubing at the end of your infusion

gazyva.com/first-line-cll.html

Gazyva is also buffered in a saline solution. "Dilute 40 mL (1,000 mg) into a 250 mL 0.9% sodium chloride infusion bag", so you already get at least an additional cup of water via your IV, hence the fun of waltzing the IV drip stand to the toilet at least once during each infusion.

My concern is that people can go dangerously overboard with how much they drink during treatment. Water is toxic when drunk to excess and the result can be fatal if you drink so much your sodium serum level falls too low (hyponatremia).

There has been a great deal of misinformation regarding how much we should drink for our good health shared over the years, often by allied health professionals. The glaringly obvious one is that caffeinated drinks are dehydrating, so you supposedly need to drink the equivalent amount of water to the amount of tea, coffee, or soda water/energy drink you have. That is absolutely incorrect as this Mayo Clinic article points out: mayoclinic.org/healthy-life...

If your urine is pale, you really don't need to drink any more fluid in my non-medically trained opinion.

Neil

[Rico49 in reply to AussieNeil]

Thanks Neil. I've always thought someone could over do it with water. With all the sophistication in the field you'd think they could arrive at some consensus about hydration and water. Great Mayo reference.

What got me personally was I was drinking 80+ ozs of water daily ( no caffeine)and my BUN said I wasn't getting enough fluid so I was put on an IV- .5 liters.

[Big_Dee in reply to AussieNeil]

Hello AussieNeil

Love it, love it, "hence the fun of waltzing the IV drip stand to the toilet at least once during each infusion". How about 5-8 times durning infusion. 😂 I like the pale yellow color test as best, although hard to gauge depending on amount of water in toilets, how are those people in Europe which do not have standing water in their toilets. Get out the measuring cups. 😂

[SofiaDeo]

It's not necessarily "how much water do you drink" but "what's your total fluid intake." Water in our foods counts. The Mayo Clinic recommends guidelines from The U.S. National Academies of Sciences, Engineering, and Medicine:

mayoclinic.org/healthy-life...

Environmental, disease, and other factors modify these recommendations. Someone outside in the desert Southwest of the US at 100 degrees, likely needs more fluid than someone in the Southeast with humidity 80% outside.

I like to eat watermelon when it's hot out, more enjoyable than just drinking water haha

[Rico49 in reply to SofiaDeo]

Certainly a complex topic.I live in Florida and used to play a lot of golf in very humid weather . I've seen many people become dehydrated and not even realize it.

I recall playing golf in Phoenix when it was 107° and no humidity. I was in my 40s and just recovering from chemotherapy. I remember drinking seven Gatorades to be sure I'd be okay. I ended up in the hospital with an IV for a couple hours. That's when I learned you had the drink water as well as Gatorade.

I think the discussion around hydration is different for people that are healthy and those that are ill like many of us.

I like your watermelon idea!

😁😁

[AussieNeil Partner Administrator in reply to SofiaDeo]

Exactly SofiaDeo, That's per the advice from five experts regarding the general health question "Do I have to drink 8 glasses of water per day"

healthunlocked.com/cllsuppo...

Arguably, public health announcements encouraging people to have enough fluid, lose this fundamental fact in the attempt to get out simple, guiding message. The 8 glasses message then becomes a dogma that at times can be dangerous if applied without reasoned application.

Neil

[Big_Dee in reply to AussieNeil]

Hello AussieNeil

On my second infusion pre-check before starting infusion, I had 103 deg F temperature. Doctors were concerned that I might have sepsis, so spent 5 days in hospital waiting for lab results. I suspect they suspected I might be dehydrated so they proceeded to give me 6-1/2 liters of saline solution in 6 hours. By 11:00 PM I was so fluid congested that I had difficulty breathing. I called wife, wife called charge nurse and told them to get in and check me. Spent the rest of night on diuretics. Oh fun times. 😅

[Ladylin151]

I think what is being missed in the messaging is that your electrolytes must be balanced with your fluid intake. Everyone needs APPROXIMATELY 8 (8 oz) glasses of FLUID or 2 liters or 1/2 their body weight, but individuals need to fine tune that. ( 1/2 body weight is a good tuning mechanism!) It's the details, like fluid ( not just water) and the size of your glass and the size of your body, not to mention individual metabolism,food choices, activity levels, climate and medication. It is entirely possible to drink so much water that you deplete sodium, potassium and magnesium. The signs of low electrolytes are weakness, muscle cramp and headache. Exactly like dehydration! The reason is that the water cannot stay in your body and do it's many jobs if you don't have the balance of electrolytes. There are very very few "electrolyte" drinks that have a good balance and sugar changes the picture again so Gatorade isn't nearly as helpful as it could be. The general public seems able to take anything to an extreme so general advice tries to be so general! 🤦

[Sojomama13]

I am on the Acalabrutinib, Obinutuzumab and Venetoclax (AVO) trial. I was advised to drink 3 liters of water a day. I drink about a gallon. There have been a few occasions when I did not drink enough water. Those days I had lots of bubbles in my urine and pain in the flanks. In my opinion, the water we are asked to drink prevents the kidneys from being too taxed.

Don’t get me wrong, it is a tremendous amount to drink. My Grandfather had diabetes and excessive bubbles (like a head of beer)in the urine were a symptom of his kidney function depletion. If drinking the water helps ease the medication’s effects on my body, then I am drinking what is advised.

Sandy

[Smakwater]

Roco49,

I was given instructions during the trial that I was in to start off with 64-82 ounces a day. At the time, I was 58 years old, in good physical condition with no co-morbidities. The medical team monitored my creatinine closely, only once did my creatinine climb. that was when I increased my exercise level on a warm day without increasing hydration. I also drank unsweetened green tea and other fruit juices not containing CY3AP inhibitors if I felt thirsty in addition to the prescribed water.

I found that if I over hydrated it would influence leg cramps. I suppose this was from flushing electrolytes and such out of my system.

You are well thought as you said, to ask the infusion nurse about your individual hydration needs.

Important to listen to your body and inquire with those monitoring your progress.

Be well,

JM

[Rico49 in reply to Smakwater]

thanks. there have been some interesting points in the discussions..everyone is different and the amount of water and electrolytes needed will be different for each person.

the medication guide provided by venclexta specifically says to drink "about " 56oz of water. Gazyva is not clear!

[Smakwater in reply to Rico49]

As we read "guide lines/recommendations".

[spi3]

My husband's Dr and medical team (Dana-Farber top CLL Expert) instructed him to drink 3 litters of water a day when he started Venetoclax (he had finished is O) last year to keep his kidneys hydrated and to reduce side effects -- he is doing so well since. Before he started treatment, my hubby's creatinine was very high.

[Rico49 in reply to spi3]

Thanks. The medication guide for venclexta says about 56 oz of water. 3 liters is 101 ozs. it depends on your weight and other factors that I'm sure Dana Farber took into account. They can monitor this with the blood test that we run(bun).one rule of thumb is to drink 50% of your weight in ozs.but again it would depend on where people live ,what's the temperature and what humidity is. there really isn't an exact number of ounces of water to drink based on everything I've read. Neil basically said that when I first posted this.

[craterlake in reply to Rico49]

Exactly ,, i am taking venclexta .. now that it is summer and the humidity is down to 30 % or so and 85 or 90 degrees and i am working outside on our farm ; some days i drink twice as much water as i did last winter .. it seems to just be enough to keep the urine a pale yellow .. i am finally convinced that it is definitely the drug that makes me need more water even in the winter ,, so i drink more water and am feeling good .. 😊 .. blessings . james

[DanBro1]

64 ozs per day is a standard rule of thumb while undergoing cancer treatments. Of course, practicing medicine is an art as well as a science, so your doc may tweak it up or down depending on your other health considerations...

[Gisygirl]

I was sent a 28 oz water bottle that I keep in the fridge and was told to consume 56 oz. daily. After a number of months, I was told not that much any more but keep well hydrated. This on Venclexta as the Gazyva went wild in my body and I only had 2 sessions.

[Rico49 in reply to Gisygirl]

I like the bottle 😎

[Skyshark]

It was the adjunct Allopurinol to prevent TLS that requires more water than the 1.5-2 litres Abbyie state for Venetoclax. People at "high risk" of TLS should start on Allopurinol before the first infusion of Obinutuzumab.

"If your doctor has recommended you take allopurinol with lots of fluid, try to drink 2 to 3 litres of fluids every day."

nhs.uk/medicines/allopurino...

[Rico49 in reply to Skyshark]

Thanks I am and I am!👍

[SERVrider]

FWIW a US gallon is 3.6 litres a UK gallon is 4.56 litres. A UK gallon is 8 pints a pint is 20 UK fl. oz.