Fluid in lower legs and foot numbness ..

[Rance2222]

Hi All, Been On Imbruvica 140mg 3 per day for 3.5 years , no side effects to speak of except now, fluid in lower legs And some numbness in feet and toes ..Walking 4 km everyday , so not restricted in that area ..Anyone else having the fluid and numbness Problem ..Tks. Vin

[Ginajetta]

Yes i have been on imbruvica for 2 years and get numbness and tingling in toes and feet also some days legs feel a little heavy otherwise doing ok.

[Rance2222 in reply to Ginajetta]

Thanks for the reply Ginajetta Took a couple of years for side effect to kick in but I can easy live with it ..Cheers

[retired46 in reply to Ginajetta]

Hi there, same here .

[LeoPa]

Did you have your kidneys and heart checked out? Fluid retention is sure no joke.

[Rance2222 in reply to LeoPa]

I have indeed , full blood checks every 3 months , Blood pressure weekly at home, No abnormal signs ...

[LeoPa in reply to Rance2222]

That's good news. Does elevating the legs while sitting or laying down help?

[HailMary-USA in reply to Rance2222]

Hi Rance. I’m treatment naive but do have leg and ankle swelling.

A recent Echocardiogram (heart ultrasound) detected Leaky heart valves. Something to be aware of, and not detectable by other means.

Please watch for any other heart symptoms such as shortness of breath or fatigue, and discuss with your doctor.

Best wishes from Mary

[DelrayDave]

I am on ibrutinib now 5+ years and have edema/fluid in both lower legs, ankles, and feet. Shoes up one full size. My nephrologist confirms kidney disease is stable and no one suggests treatment. Creatinine steady at 1.7 to 1.9, last 1.7. It seems a side effect of ibrutinib. I was also on Eliquis for a couple of years and that also probably contributed.

Do check with a nephrologist to be sure there is no immediate danger.

Good luck.

David

[Rance2222 in reply to DelrayDave]

Thanks for reply David ..Still doing 3 monthly’s and Oncologist is happy, started with CLL that turned into Leptomenangeal , After a month on Imbruvica that miraculous disappeared , I’m one lucky person !!

[country76]

Yes, I did have edema in my legs and some numbness. Between the edema and cramping and knee pain it was hard to walk very far.

[Rance2222]

Thanks country ,