Venetoclax and weight loss early

[profrich]

Although all my numbers have improved substantially after almost two weeks on venetoclax (ALC 41000 to 9000; Hg 10.4 to 11.5, etc), I have lost weight and experience fatigue on and off throughout the day. Have others experienced this with good numbers?

[thb4747]

I wish I could lose weight while on Venetoclax! No such luck so far. I’ve been taking it for 48 weeks and been in remission for almost 3 months.

[profrich in reply to thb4747]

Did you take rituximab?

[thb4747 in reply to profrich]

Not with the Venetoclax but I’ve been treated with Rutuximab 18 times in the past.

[Smakwater]

Profrich,

I gained ten lbs in two months. I eat more, because I get nausea if I do not keep a full stomach.

JM

[thb4747 in reply to Smakwater]

That’s interesting. I get nauseous about 60-90 minutes after taking the dose (I take 200mg each morning) and lunch seems to fix it. I might have to throw in an extra mid-morning snack perhaps?

[Smakwater in reply to thb4747]

My nausea lasts about 1-2 hours. I take 400 mg right after lunch. When I began venetoclax I took it at between 6:00 and 7:00 AM.

[81ue in reply to Smakwater]

Right now I take Venetoclax at lunch time. Eating to get rid of nausea is what I've been doing too. It feels better to have a full stomach. I think I might experiment with using the "Quesy Drops" hard candy samples that the pharmacy gave to me instead of filling up my stomach I also have some left over nausea pills to melt on my tongue. I don't want to keep snacking after lunch through dinner for this odd nausea that needs food.

[Smakwater in reply to 81ue]

Overall, I find that right after dinner works best.

[Mcpill]

I take Venclexta at 6 pm. I usually have dinner shortly thereafter and have very rarely had problems with nausea. I started (ramp up) September, 2017. I have lost about 25 pounds over that period, but it is the weight that I gained with Imbruvica. I had quite a problem with edema while on it, and my body continues to adjust even now.

Perhaps you could try taking the pills early evening.

Wishing you well,

Susan

[casanova]

Hi Profrich,

I had a rapid count drop on Venetoclax and suffered with fatigue in the first six weeks. I also felt nauseous about an hour after taking my tablets and suffered with diarrhoea. I lost ten kilos in weight which I think was caused by the diarrhoea. I stopped taking my tablets at breakfast and now take them after my evening meal which seems to have solved the problems. I have also now gain my weight back, and some 😓. Started my treatment August 2017.

Good luck.

Maureen UK

[ChrisLovesLife]

I've lost 11 lbs since starting 1/14/19 but it was mostly edema from my prior drug trial, it was miserable, squishy stomach gain. All gone now and stable on weight, eating mostly a keto diet with a carb or two snuck in here and there. I always take my dose with a snack if not my midday meal or experience a little queasiness.

[brooklyn7672]

Thank you for the info. I am taking 600mg daily. did you take all the pills at once or spread out during the day. I take 200mg at breakfast (8am) 200mg at lunch (1pm) then 200 at dinner (5pm)

[AussieNeil Partner Administrator in reply to brooklyn7672]

The maximum daily dose of venetoclax/venclexta prescribed for CLL is 400mg which should be taken in one dose each day, not spread throughout the day. Looking back through your past posts, you've had an interesting treatment journey, but I'm wondering if you have a CLL diagnosis? You are able to arrange for a free consult with a CLL specialist through the CLL Society's Expert Access program: cllsociety.org/cll-society-...

Neil