Water retention

[Marber]

I have been bothered by swollen feet, ankles and now the calves of my legs. I have been on Ibrutinib for 4 months now and more recently (6weeks) on weekly injections of Aranesp because of low red blood count (78). I have also gained 10 pounds in a short period of time. Doctors have changed my diuretic, ruled out blood clots and ruled out heart-related problems.

Anyone else experience this?

[Cindi73]

Marber, I started on Ibrutnib Feb 2018. I did have swelling in my legs in the beginning. My chiropractor suggested taking a rolling pin over my legs starting from ankles to hips. Apparently joggers do that because some chemical builts up when running. So I gave it a try and it helped. But the swelling did eventually stop. I haven't had it since. Wishing you the best. Cindi

[Marber in reply to Cindi73]

Glad to hear that it stopped for you. Can certainly try the rolling pin. Thanks for responding.

[Shedman]

Fluid retention with oedema in lower leg is typical of reduced kidney function, and/or, heart function.. I presume this is the reason for your diuretics?

My experience was directly related to CLL; malformed biochem causing blockage of kidneys.. and was a reason for urgent treatment.. ultimately this youngsters kidneys have mostly recovered/problem resolved. More or less.

It is wise to keep your primary care doctor and your haematology doctor informed of any pattern of worsening oedema.. it might be that the ibrutinib is interfering with heart function and thus worsening kidney function/output..

Talk to your doctors and be ready to give them an objective description of the worsened oedema..

Do you weigh yourself? This is a measure frequently used to assess extent of oedema. It gives the doctors a clearer idea of how much fluid is retained.

Best of luck. I am sure you spend time sitting putting your feet up.. it does help = ideally slightly higher than your seat..