Weight gain on Venetoclax

[2gizzy]

Has anybody noticed weight gain whilst on a Venetoclax, I lost 10.5 stone some years ago and had managed to maintain a healthy weight but since taking Venetoclax I’m slowly putting in weight. My consultant says that zi will , has anybody got any suggests as to what Will help me slow down the weight gain, Ive been a member of WW for a lot of years and try to exercise regularly.

[LeoPa]

Hi, exercise is healthy but it has not much to do with weight loss, if anything. Counting calories is a losers game. Very few can do it indefinitely. Actually I've met no such person but I realize that doesn't mean they don't exist! There's only 1 way (and I tried most of them if not all 😊). Going on a "diet" that naturally suppresses appetite. That would be one containing a healthy amount of protein (no protein no satiety), healthy fats (avocado, coconut, grass fed butter, ghee, unprocessed nuts in moderation) and limited carbohydrates. The more below 100 grams a day the better.

[2gizzy in reply to LeoPa]

I've been a member weight watchers for a number of years and lost 10.5 stone and was maintaining this weight without any problem until I started Venetoclax in 2019. My consultant said I would put weight on but I'm just trying to keep the gain as low as possible. Thanks

[LeoPa in reply to 2gizzy]

Venetoclax is likely messing with your hormones. What used to be enough to keep the weight off, isn't, under the new conditions. Congrats to such weight loss and keeping it off for years. Was it difficult or just a breeze? As you know it's always calories in versus calories out. Did your consultant say whether you will burn less calories or take in more? Can the basal metabolic rate drop on venetoclax? Does the brain burn less calories on it? These are the two largest energy consumers. Increased appetite due to the pills and increased calorie intake is more likely IMHO. Proteins suppresses appetite, carbs increase it. The solution hence lies in diet composition. Good luck in your efforts!

[AussieNeil Administrator in reply to LeoPa]

LeoPa, I don't understand why you think weight gain on venetoclax could be related to hormonal changes. Surely removing the nutritional demands to maintain the CLL tumour burden, along with the further nutritional demands that were involved in supporting a struggling immune system previously suppressed by CLL and replacing red blood cells and platelets removed by a swollen spleen ahead of their time are more than enough reasons?

Neil

[LeoPa in reply to AussieNeil]

Neil, when people gain weight it's because they eat more than the body needs to maintain weight. Prior treatment it was a certain amount of calories that ensured a stable weight. After treatment it may be a different amount thanks to the factors you mention too. In a case of calorie counting, it is very hard if not impossible to establish where the problem is, because calorie counting means going against the body and ignoring the signals it sends via leptin and ghrelin and other hormones which are involved in homeostasis. Therefore calorie counting is not sustainable in the long run as it doesn't fix the root cause of the problem. I don't think anybody calculated how much energy is taken up by advanced CLL, so that would be hard to quantify. You are right that it does not need to be the pills that mess with hormonal signalling. It could be just the composition of the diet or something else or a combination of these. But the solution lies either way in what I wrote because the problem is always in the increased appetite. It's not normal to want to eat more than the body needs and then try to fix the problem by ignoring the signals that drive us to overeat. The body always wins 😊. Muting these signals back to normal levels is the winning strategy. But you know this already. Thanks for the input. Another angle I haven't considered earlier.

[AussieNeil Administrator in reply to LeoPa]

I guess you are assuming 2gizzy is calorie counting. I assumed 2gizzy hadn't changed their diet in either quantity or composition, i.e. per your first sentence "because they (now) eat more than the body needs to maintain weight" and that requirement has changed because venetoclax has removed the nutritional demands of the CLL tumour and compromised immune system. I lost 5kg (11 pounds) when I started treatment (acalabrutinib, venetoclax and obinutuzumab), but put it back on - and more, when my CLL was vanquished. I'm not aware of venetoclax having any off target effect on hormones.

[LeoPa in reply to AussieNeil]

Yes, I assumed calorie counting. Isn't that what weight watchers do? If calorie counting was that easy the solution would lie in just reducing the calories further and just counting less of them 😊 But it doesn't work like that. The body is an adaptive mechanism. You reduce calories it reduces the metabolic rate, body temperature, energy levels etc. And you still gain - on fewer calories to boot!

[Gisygirl]

I recently started Venetaclax and drinking all that water has my legs swelled up and feeling heavy. I am sure adding pounds to the scale.

[Analeese]

I had lost 25 pounds before I started treatment. And I have gained back 8 pounds since I have been on V. Oh I could not say definitely that it is because of the V because it very well could be because my lymph nodes in my stomach have reduced and my appetite has increased.