Weight loss with Venclexta

[brooklyn7672]

I am taking 600mg of Venclexta daily and am loosing weight. Is anyone taking this and how do I gain the weight back.

[Newdawn Administrator]

That’s a higher therapeutic dose of Venetoclax than is used for CLL so can I assume you have a different form of blood cancer brooklyn? I’ve been on 400mg for over 2 yrs and haven’t lost weight. Are you suffering any gastric issues that could explain this. Is your appetite normal?I think this is one for your specialist because it could be such a high dose could result in this weight loss.

Hope it’s working for you however.

Newdawn

[brooklyn7672 in reply to Newdawn]

Thank you for the response. I have a hybrid of CLL and LPL (Bone Marrow Cancer where my spleen gets enlarged and now has shrunk) I usually have a weight of 165 - 170 and would like to stay around 170. I was at 159 this morning. I have seen a nutritionist who is recommending a diet for me. Are you or have you experienced any other side effects? I get some aches and my WBC is around 1.0. Working on getting shots of Neulasta. Thanks again.

[Newdawn Administrator in reply to brooklyn7672]

I’m on a clinical trial (U.K.) for Ibrutinib & Venetoclax. I had to stop Ibrutinib at 15 months due to severe arthralgia and myalgia. Thankfully Venetoclax hasn’t caused me any significant side effects (that I’ve attributed to it). I’m now uMRD but have to continue on 300mg daily till Feb as per the trial protocol. I have lost 7lbs since coming off Ibrutinib but I feel that med does cause weight gain.

My only errant lab result at the moment is a slightly depleted ALC at 1.4 but I’m lucky not to have suffered cytopenias during treatment. I have a severe joint problem presently but did have pre-existing arthritis. In truth I don’t know if Venetoclax is implicated in any way but it’s such a successful CLL treatment, I’d persevere with it regardless!

Your weight loss isn’t massively significant at the moment but obviously keep an eye on things.

Newdawn

[lankisterguy Volunteer]

Hi brooklyn7672,-

I'm curious, was the 600 mg a typo?

A quick check of the dosing schedules for CLL and other uses shows 400 mg daily.

Some patients that have side effects have asked their doctors to permit reducing down from 400 mg successfully. And the original clinical trials went up to 800 mg but did not find a benefit but more side effects.

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There are a few previous posts mentioning weight loss in the box on this page labeled "Related Posts" but not really significant information.

These might help: healthunlocked.com/cllsuppo...

A search on weight loss yielded these results: healthunlocked.com/cllsuppo...

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You should actively engage your doctor(s) to explore other causes, infections or indirect side effects.

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BTW, I had difficulty with weight gain when I started Venetoclax, and it has not subsided since 2016, I must closely restrict my calorie intake to maintain my goal weight.

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Len

[brooklyn7672 in reply to lankisterguy]

Thanks Len. We'll keep working at on the weight gain. I have a nutritionist who is helping me but looks like a long trip. I'll look at the other suggestions you gave me. Thanks again.

[RosettaClapp in reply to lankisterguy]

I gained weight too on venetoclax ..i just felt so much better so I ate more .. I hadnt realised how poorly I was feeling before I started my fist treatment for CLL

[Flute117]

I had issues with diarrhea while on 400 mg Venetoclax and lost about 10 lbs which is somewhat significant for someone who started at 119 lbs. I worked with a nutritionist to find the right foods that helped. I hadn’t realized how much Venetoclax suppressed my appetite until I had been off it for about two weeks. It has been about a month and I am pretty much back to eating everything with no issue. My goal now is to maintain my weight.

[LeoPa]

When there is a weight loss the reason is always because of less calories in than out. The reasons for this can be multifold but the law of thermodynamics is still valid. Therefore in order to increase your weight you will have to increase your calories intake. But please remember that there is a healthy way of gaining weight and there is an unhealthy way of gaining weight. It all depends from the composition of the diet. Hopefully your dietitian will give you good advice and guide you through this. But in case you want to have more understanding about the problem and to learn how to gain weight in a healthy way, please read my favorite book as of late written by Dr. Lustig which is called Metabolical. You will become a partner in the discussion with your dietitian as opposed to someone who is just following orders pertaining to a subject he does not understand.

[dazed1]

fwiw, While taking venetoclax with ibrutinib I lost about 40 pounds. Enjoyment of sweet foods vanished, but suddenly enjoyed veggies. Two days after stopping V my old preferences bounced back. Good thing I kept my "fat" clothes.

[Gardengirl44]

Hi!! I am sure the medication piece will level off, but in the meantime, I think the best way to boost the weight or at least add some good things to your body is by remembering to add in to every meal something like Avocado, Peanut Butter, Olive Oil, extra type stuff to add density and healthy fats. All the best!

[Hiker13]

I am on Obinutuzumab and 400mg venetoclax. I lost weight the first few weeks, then started to slowly gain weight about the fourth month.

[DelrayDave]

I switched from ibrutinib to venetoclax 300 mg. in June of this year. Nausea and reduction of edema caused about 20 pounds loss of weight. I still do not have my usual appetite back, but the actual nausea is gone. My various doctors are not worried. My BMI is normal. I am eating the same as I did but seem to burn calories faster on this drug.

David

[brooklyn7672 in reply to DelrayDave]

Thanks Dave. I'm trying to eat healthy and keep the weight stable in hopes I can gain more weight. I have a nutritionist help.

[Catnap7]

I lost over 15 pounds when I was on Ibrutinib and Venetoclax I was starting to get pretty worried .. also noticed the loss of muscle mass Don’t have that problem anymore My muscles are back and it is so pleasurable to work out when OFF drugs Catnap7 🐈