Lymphedema with CLL

[Okeefish]

I have Lymphedema in right arm and trying to determine if any connections to CLL or Acalabrutnib!

[AussieNeil Partner Administrator]

Nothing has come up in the Related Posts section, nor could I find specific mention of any relationship between the two conditions with an online search. Lymphedema relates to impairment of the lymphatic circulation system (basically muscle activity powered), whereas acalabrutinib inhibits the CLL and other B cells in the nodes along the way as well as elsewhere in the body where they have accumulated. It's normal for nodes to swell and shrink in response to infections; as they contain germinal centers where lymphocytes multiply while trying to find receptor matches for the infection causing agent.

Lymphedema needs to be managed if it doesn't resolve, so I hope you have good medical support for what can become a painful chronic condition.

Neil

[Okeefish in reply to AussieNeil]

Thank you for the response! I am grasping at straws to try to figure out why I got the Lymphedema without any injuries or other apparent cause? I do have an excellent therapist who is a lymphedema specialist! By massaging and wrapping she has gotten my arm back to nearly normal size! Hopefully, I will be able to keep it in control with special glove and a sleeve to avoid wrapping all the time! I’m also getting a pump and sleeve plus a garment to do daily massages of the lymph system!

[kitchengardener2 in reply to AussieNeil]

Hello Neil, I chat with a lady as a buddy with Leukaemia Care and she has been diagnosed with Lymphodema in one arm. She says it aches a lot and restricts things she can do. She was referred to the Lymphodema nurses but apart from being given a very uncomfortable sleeve to wear, nothing else is being done. She has had CLL for 15 plus years, she is taking Acalabrutinib and is in her late 80's.I had not heard of CLL causing Lymphodema, it usually affects people who have had lymph nodes removed due to surgery for breast cancer. I have heard of men getting it in their legs after surgery for groin injuries.

[AussieNeil Partner Administrator in reply to kitchengardener2]

That's my understanding too, that lymphedema is typically caused by physical damage to the lymphatic drainage system, often from surgery.

[DanBro1]

I have CLL and have lymphedema in both calves - I just started wearing compression socks to see if they help..... I don't believe it is related to my meds.

[Hidden]

I don’t know if I would go as far as to say that my wife had lymhodema, but one of her legs and foot where very swollen while she was on venetoclax. She seems to have gone back to normal after switching to pirtobrutinib.