Acalabrutinib and water

[Curling123]

I was wondering, since starting Acalabrutinib four days ago and with all the water, (8cups) you have to drink, I have lost two pounds. Since I have lost 10 pounds in the last year already, I don’t want to lose any more. Has anyone else experienced weight loss in treatment? Do other treatments necessitate loads of water intake as well? I notice already my large neck nodes have decreased in size. Would that account for weight loss? Getting worried if it continues. Thank you

[Vizilo]

Have been on Acalabrutinib for about 18 months and have not experienced any weight gain or loss. As advised, I take the meds with one glass of water twice per day. It’s recommended that you consume 6-8 cups of liquids while you are on Acalabrutinib. So, I make up the difference (4-6 cups) by consuming juice, fruit, coffee, tea throughout the day.

If your food consumption has not decreased in the last year, you might mention your weight loss during your regular visit with your physician.

[Panz in reply to Vizilo]

I was told that coffee, tea and any liquids containing caffeine could not be counted as water.

Panz 💕🙏🙂🌈☘️👍

[Vizilo in reply to Panz]

Panz, I was told the opposite: that you can count coffee and tea when measuring total intake. While such drinks may have a mild diuretic effect, they don’t increase the risk of dehydration

[Panz in reply to Vizilo]

It would be nice if they got their stories straight….I do like your version better, however, I know I have one healthy normal size kidney and one half that size but is functioning so I will be factoring that in. I could drink 2 gal. If I could count the coffee!!! lol

I currently with the heat we are getting here in FL am having issue with dehydration as I am outside 4+ hours a day.

This shan’t last much more then 4-6 weeks! I HOPE!!!

All the best,

Panz 💕🙏🙂☘️🌈👍

[Vizilo in reply to Panz]

I sort of trust the Mayo Clinic website (as much as you can trust any website🧐). They like water the best but don’t think consuming caffeinated drinks is an issue. See:

mayoclinic.org/healthy-life...

Hope you manage the heat okay. No problem with dehydration this weekend in Niagara. Raining all weekend and currently an unseasonable 60F🥶

[Panz in reply to Vizilo]

Thank for sharing your source of the Mayo Clinic….I too hold the utmost respect for the Mayo Clinic…we have a satellite in Jacksonville, FL.

We surely could use a little of your rain and cooler temps, however, I shouldn’t complain as it is far more important that we get thru Hurricane Season and thus far are fairing rather well, however, we have a long ways to go!

I am having a cup of coffee as I write this…..life I’d good indeed!

Thanks again!👍

Panz 💕🙏🌈☘️🙂

[schmooth97 in reply to Vizilo]

Caffeine takes water out of the body.

[Vizilo in reply to schmooth97]

But caffeine does not cause loss of fluids in excess of amount ingested. You may have to pee more often but your body won’t lose any more fluid than what you drank.

[SofiaDeo]

I have to maintain good fluid intake on venetoclax. IMO it's more about not affecting your kidneys with dead CLL byproducts versus the drug itself harming your kidneys. As well as, we need good hydration for all ouf our body cells to function at their best, moving nutrients in and waste products out.

[Annie1920 in reply to SofiaDeo]

Obinutumazab requires a lot of water/fluid intake too

[lindalou5 in reply to SofiaDeo]

Also as I have found out lately, coffee is on the list for not being helpful with good iron absorption. Something some of us have to watch out for. I still drink a cup or two, but continue to drink loads of water.

[AussieNeil Administrator in reply to lindalou5]

Tea also reduces iron absorption .

[craterlake]

Good morning Curling , the water has to be weight dependent to some degree . when we are biking in hot weather our son in law who is 6 foot 4 inches drinks about a gallon a day of water ... plus juice which he does not consider to count to take the place of the water .. he does not drink pop by the way ...... i am 5 foot 7 inches and weigh 144 ponds and only drink about 2 quarts max ... but since starting the calquence i definitely feel it if i do not drink enough water during the day ..... i also had lost weight before i started the calquence . it is one of the symptoms of advancing cll . before i started the calquence i did a 5 day prolon fasting mimicking diet . NOT recommended by the prolon folks for people over 70 especially with cancer ....unless you have your doctors supervision ... it really helps people who are taking chemotherapy ... the chemo is given 1 1/2 days into the fast ... well i have fasted before so i did it anyway ... by the end of the 3 rd. day i was feeling better . but i got down to 122 pounds ... i carefully started eating again . no dairy or meat ... slowly started exercising . this is with a hemoglobin of 8 ... so anemic .... started taking the calquence which started shrinking my massive spleen . then i had more room for food and i was feeling better so my appetite increased dramatically ... i had 2 iron infusions and with a smaller spleen and the iron my hemoglobin went up to 12.3 within 2 months . i was gaining weight all this time .. i started getting some belly fat so i started exercising more . swimming , biking , walking , digging ditches for our irrigation lines on our farm . etc . i installed a pull up bar in our carport and doing some push ups as well .. i can now ride my bike up the hills on our gravel road in 8 th gear .. i have not been able to that in years .. i had my 74 th birthday last week -still no dairy or meat in my diet .. unfortunately i had to stop the calquence 11 days ago because of low platelets ...By the grace of God and the good diet plus the remarkable effect of the Acalabrutinib i am in better physical condition then i have been in years .. where do i go from here ??? only God knows .. i will keep every one posted as they have helped me so much . you have a very good chance of having the same results with the calquence .but without the low platelets problem. do not worry . just keep looking up and moving forward .. blessings , james

[Curling123 in reply to craterlake]

James you have worked hard by eating well and exercising towards good health. If only we could find something that levels out our platelets and hemo. Treatments seem to work best at reducing WBC. It’s confusing to me why your platelets would drop from 170 to 70/80 while on Calquence. Since I am new to this treatment and unsure what my path may take, I can’t be much help. I can only wish you blessings and that platelets improve and you can continue Calquence since it was working quite well for you in the beginning. Keep us posted. We are all learning from one another’ s experiences and that is a definite plus on this journey. Thank you.

[SofiaDeo in reply to Curling123]

The various tyrosine kinases (of which BTK is just one) are enzymes involved in many body processes. So while it wasn't anticipated that platelets would be adversely affected, in some people they are. As well as the kinases involved in skin and GI function. So until newer agents that are more selectively targeted get developed, we see problems. Issues like this are common in the "early years" of many drug classes, the cephalosporins being the one that offhand pops into my head.

plateletservices.com/2020/0...

pubmed.ncbi.nlm.nih.gov/173...

uptodate.com/contents/tyros...!

FYI, some clinical trials seek to collect the various diseased tissues, to have something to grow to test against new drugs. IMO this helps determine which drugs *might* be clinically useful, compared to decades ago when the first trials in humans were more of a guessing game. Now they can actually test in diseased cells as well as animals, before trying out humans.

clinicaltrials.gov/ct2/show...

[craterlake in reply to Curling123]

thanks ---- i did cut back on my calorie intake as it seems the calquence makes me eat a little to much .. i also only eat 2 regular meals per day . big breakfast , then lunch at 2 pm .. then my green /beet vit. c smoothy after 6 with a piece of fruit and a couple of rice cakes .. anymore than that in the evening and i start to get more belly fat ... i don't like that because it reminds of when my spleen was huge ... besides my pants do not fit right .... ha ha ...............Yes a definite big plus for all the wonderful info and compassion shown here on this forum...😊👍

[HailMary-USA]

Hi Curling, I lost several pounds in my first few weeks on Calquence, due to rapid reduction of my massive spleen.

The weight loss trend then reversed and I’m now 10-12 pounds over where I’m comfortable.

I do think the med is contributing to abdominal weight gain, but I also can’t pretend to have any discipline for healthy dieting.

Best wishes from Mary

[Pageboy]

I lost about 7 - 10 pounds when I started Acalabrutinib and it has stayed off. Came off quickly too so perhaps it was something to do with the spleen/node size reduction. Levelled off after a few weeks but was worried too at the beginning. I can’t say for sure it was the Acala /water but the two appear connected in hindsight.

[schmooth97]

I just started 6 days ago and weighed myself and was up 6 lbs. in a week, but just remembered that I drank most of the 96 oz today back to back right before then, so that was probably it. Either way, shakes to lose weight for me for the time being, but I am not having weight loss issues. You do gain and lose throughout the day and 2 lbs is within the 1-5 lb. range, so you’re probably fine.

[kitchengardener2]

I drink copious amounts, not just water although water is best to flush nasties out. I lost a bit of weight (could stand to lose more). I have been on Acalabrutinib just one year and feel marvellous.

[studi]

I am on imbruvica and have been for about 3 years and my white cell count is now 13 so all seems to be working.I have not seen any weight loss I think I have gained some purely with the amount I eat which I am going to cut back on.I drink plenty of water and drinks during the day,which I was told to do.It May be worth contacting your consultant and just have a word with him.I would not have thought that there was any thing to be worried about,and he may be able to explain why.Hope it is soon resolved as you do not want any additional worry.

Thanks

Trafford

[JIDD]

Hi Curling123

Curiuosly I started losing weight just before I started Acalabrutinib -

Monthly Averages (kg)

Jan Feb Mar Apr May Jun July Aug

82.21 82.21 81.31 80.13 79.24 78.31 77.97 76.72

I started Acalabrutinib on 21 April. I have been 82(+ or - 1) for years before.

The MacMillan Centre at UCH, London, have referred me to Gastro-Ent at UCH. We shall see!

[BaseballGardener]

The requirement to drink lots of water is to help clear your body of the white blood cells that are being killed off and removed through the kidneys. You should talk to your doctor, but I suspect that you may be losing weight because of your CLL condition itself, not because of the drug and water intake. This seems to be confirmed by your message; you had already lost 10 lbs. before the treatment started. You may start to lose muscle tone, and should consider nutritional supplements for that, too. My mom was diagnosed with CLL 5 years ago, has been on acalabrutinib for 3 years, and has lost 30 lbs. during this journey; most of the weight loss occurred before the drug therapy started. Thankfully, her weight has been stable for the last few years. You should also review any prescription doses you may be taking for other reasons. For example, if you are diabetic or taking high blood pressure medication, then these doses should be adjusted for your new weight.

[happyclappy]

I was just told to drink lots of water. Can't remember it being quantified. How much is 8 cups?As for weight loss! Lol!

I'd king of lost my appetite prior to Acalabrutinib, but my, how that's changed!

[CaptRon1976]

I’ve lost around ten pounds in the last year or so. I attribute it to better nutrition, watching simple carbs, processed foods and reducing meat proteins. On Acalabrutinib I have not noticed any additional weight change.After you rule out other causes for weight loss, your weight loss may be due to a lack of ice cream!

[phd1114]

I experienced the same thing when starting Acalabrutinib. When I discussed the weight loss with my CLL specialist (as I too had already experienced significant weight loss prior to starting treatment), they indicated that it was likely due to the leukemic cells being flushed from my bone marrow and nodes, increasing them in my blood stream and causing initial weight loss (CLL causes weight loss). However, this was just an initial reaction, and as my CLL cells continued to decline with further treatment, my weight came back up and stabilized. I wouldn't be too concerned as long as you continue to eat, drink and sleep in a healthy manner.

[Curling123]

thank you all for your responses to weight loss. It has helped me to worry less, which could be another reason for weight loss. Makes sense that Calquence, plus water is flushing out cells and reducing my bulky nodes, hence some weight loss. Don’t know what I would do without this forum of thoughtful and helpful CLLers.

[OSUfan]

On calquence for 10 months and have gained about 8 pounds. 162-170. Found that appetite is too good since on the drug. Tough to control food intake.

[Bill1288]

I have been on Acalabrutinib for 3 years and 3 months. Have not lost weight due to Acalabrutinib. I fluctuate a couple of pounds up and down, nothing substantial. I augment my water with coffee in the morning, and drink a bottle of Gatorade and a can of V-8 Juice that seems to help with my joint and muscle pain. I usually drink at least 48 to 64 ounces of water.

Bill

[Direstraits12]

hi there Curling123. I’ve been on Acalabrutnib for two years now. I remember my weigh being fairly constant the first couple of months while my nodes and spleen decreased. Some tiredness during this time too. Then came weight gain. From 72 - 87 kg. Then stable for just over a year. I think I didn’t realise how thin I was before treatment! Acalabrutnib has been a life saver to me: stick with it, you’ll put weight on once the meds kick in.

[janvog]

I only drink warm water since DECADES. I am 88 with CLL and take Imbruvica. My CBC and CMP are normal. I even sip warm water during the night for dryness caused by C-PAP. During the day, I remind myself to drink "half-cup" quantities of warm water.