CLL and Lymphedema

[Okeefish]

CLL and Lymphedema in forearm while taking Acalbrutinib (Calquence). This appeared without any warning about 6 months ago after a year and half on the drug? The Clinical Trial (Assure) Doctors think there possibly is a chance the drug could be involved, since there was not an injury or definitive cause found? I am using a massage sleeve but it is staying constant even with an hour per day usage and wearing a compression sleeve while awake!

[CycleWonder]

Okeefish - I looked this up since this term is new to me. Do your doctors think it will resolve in time with your treatment?

I am sorry you are going thru this. I hope it is not painful.

[cllady01 Former Volunteer]

Has your Dr. done the following tests to find the cause?

How Is Lymphedema Diagnosed?

First, your doctor will examine you and ask you when you first noticed the problem. If your arm or leg is swollen, your doctor may measure it to compare it with your other arm or leg. Usually, if your swollen arm or leg is 2cm (about 4/5 of an inch) bigger than your other arm or leg, you have lymphedema.Your doctor may also suggest other tests to find out if you have lymphedema and if so, what is causing it. Lymphoscintigraphy is a test that uses radioactive material to see if the lymph vessels are blocked. Computed tomography (CT) scans and magnetic resonance imaging (MRI) can take pictures of the swollen area to find out why the lymph vessels are blocked.

cdc.gov/cancer/survivors/pa...

[cllady01 Former Volunteer]

Okeefish, to help with understanding your situation, is the Assure trial you are on looking at your heart issues? I found the following that appears to be a Clinical evaluation of a cardiovascclar device.

clinicaltrials.gov/ct2/show...

If there is a Clinical Trial named Assure in regard to Acalbrutinib or other BTKi, I haven't found it.

I certainly hope, with your history of Quad surgery, your Drs. are aware of BTKi side effects and are acting on your situation posthaste. There should be a conversation ongoing with your CLL provider.

[Okeefish in reply to cllady01]

Thanks for your great information! My Clinical Trial is with AstraZeneca and is Assure, it is 600 participates from 21 countries testing whether Acalbrutinib is effective for non previously treated CLL patients! My Cardiologist and Trial Doctor are in concert and apparently are completely comfortable with my progress? I’m using a massage pump on my arm one hour daily which seems to keep swelling minimal? I have a history of premature beats, and a little AFIB. The drug seems to not exacerbate either, so I am being monitored closely by both Doctors? Best Wishes and Thanks for your feedback!

[cllady01 Former Volunteer in reply to Okeefish]

Happy to hear you are doing well on the trial. Best wishes for that to continue.

It sounds like you are in very good hands with your Drs.