Swollen hands since starting Acalabrutinib

[Gampo]

Hi,

Just wondering if anyone has had issues with hands swelling up so much you can make a fist whilst on Acalabrutinib? I started treatment 2.5 months ago, was on Allopurinol for the first month, within a week of stopping that my stomach was back to feeling like I'd eaten a the biggest meal ever even when I'd just had a light breakfast and the fingers of one hand were puffing up overnight. My doctor put me back on Allopurinol for a month which helped the stomach bloating and stopped the hands getting worse. Now I've run out of Allopurinol for the past week and my fingers look like fat sausages and I can't seem to get them down even after doing lumps massages on myself. I'm guessing the problem is originating from the swollen lymph nodes under my armpit. Anyone else had this? Or found any solutions?

Thanks

[AussieNeil Administrator]

Sounds like you are thinking it could be lymphedema, but that's generally caused by damage to the lymphatic vessels, typically from surgery, thereby affecting drainage and not by swollen nodes, or we'd see more questions. (I can't see any previous mention of this in the Related posts titles.) Hopefully my bouncing your post into News feed will bring more replies. Making your post private to this community will probably also help healthunlocked.com/cllsuppo...

Neil

[Gampo in reply to AussieNeil]

Thanks so much Neil. I've had swollen lymph nodes under my arm for the past year but there's not been any surgery. I also searched before submitting my question to see if anyone's been talking about this but couldn't find anything. Think I'd better check in with my oncologist.

[LeoPa]

How are your kidneys coping with the A? Do see a doctor as soon as possible. You seem to need to restart the allopurinol ASAP as well. Could be the kidneys need help with cleaning out the waste products of your dying B cells.

[jt882]

yes- my father developed swelling of his hand and forearm after being on ibrutinib for several years. the drs. gave him a compression sleeve/glove and compression device to use at home. it helped a bit.

[Big_Dee]

Hello Gampo

Good question. I have swelling in fingers but suspect it is arthritis from way before CLL diagnoses. I also have been getting "sausage toes" on/off until I started my V&O treatment. Last go-round before treatment I tried Epsom salt foot bath seemed to help. I also had lymph fluid show up both above and below diaphragm from massive bulky lymph nodes during CT scan. Blessings.

[Gampo in reply to Big_Dee]

Thanks, good idea about the Epsom salts, I'd forgotten about those