Swollen legs on O&V: I am on O&V treatment. 20... - CLL Support

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Swollen legs on O&V

Nanaimo1 profile image
8 Replies

I am on O&V treatment. 200 mg of venetoclax daily so far. My lower legs have become quite swollen since starting venetoclax. "Popeye legs." Is this common? Any suggestions re treatment?

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Nanaimo1 profile image
Nanaimo1
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cllady01 profile image
cllady01Former Volunteer

Yes, there can be swelling of limbs---report immediately to you Dr. as per this link showing possible side effects of Venetoclax:

drugs.com/sfx/venetoclax-si...

Nanaimo1 profile image
Nanaimo1 in reply to cllady01

I had read this.

Lenny123 profile image
Lenny123

There are many reasons for swollen legs, very common as we age.If significant medical problems are ruled out, consider leg compression pumps( brand names such as Flex Touch). used for Lymphedema. These are very effective if used daily.

good luck.

Nanaimo1 profile image
Nanaimo1 in reply to Lenny123

Thanks. Used compression socks Yesterday. Didn't resolve the problem but swelling is down.

Sounds like you are in the ramp up period of Venetoclax. I would wonder if the swelling is more likely related to the volume of intravenous fluid you get during or following the O infusions? I imagine they give quite a bit of fluid with these infusions that would cause you to develop edema from the extra volume received. It takes time for the body to resolve this excess independently (without diuretics) and if you continue to get intravenous infusions (as you do during the O infusions), then it will have a cumulative effect and the swelling will continue. Has anyone noticed this and then found the edema resolves over time once the infusions stop and you are only taking Venetoclax?

Nanaimo1 profile image
Nanaimo1

Thanks for your comments. Only on O every four weeks so thinking fluid isn't the problem.

Lenny123 profile image
Lenny123

Cannot stress how important medical evaluation is, still many times there is no obvious cause. may well be so called "senile lymphedema". So compression stockings are excellent, 20-30 mm Hg. worn daily, and especially when legs are dependent for a long time(eg. car rides).

Sequential compression pumps are on another level entirely. Not well known by most docs, if you can find a Lymphedema specialist that would be best.

So these are sleeves that are attached to a small pump. they gently massage fluid out of legs.

usual recommendation is for 45 mins twice daily, but tremendous benefits from even occasional use. Very relaxing, one often falls asleep during therapy.

obstacles are finding a physician who is aware. and the cost, 700 to 8000 dollars US. Insurance will frequently cover cost.

You might look up brand names such as Normatec, Flextouch for more information.

and , v important to pee before each session as the water pumped out has to go somewhere!

Nanaimo1 profile image
Nanaimo1

Thank you. Good information. Seeing my cancer doc again next week.

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