hi,
The person I’m caring for has had non-Hodgkin b cell lymphoma 3 times.
This time they are treating her with Zanubrutinib. She’s been on it for 2 weeks and her limbs have become very swollen with what looks like lymphodema.
Has anyone had any experience with this side effect?
She is very worried.
Lymphedema refers to swelling that generally occurs in the arms and/or legs. Lymphedema results from a blockage in the lymphatic system, most commonly caused by the removal of or damage to lymph nodes as a part of cancer treatment. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.
lls.org/support-resources/o...
Lymphedema is a build-up of lymph fluid in the fatty tissues just under your skin that causes swelling (edema). Lymph fluid travels throughout the body and is part of the lymph or lymphatic system. Certain cancers and cancer treatments can increase your risk for developing lymphedema.
cancer.org/cancer/managing-...
In view of the foregoing, it seems rather reasonable for this to happen in some cases (please note, this illness presents in so many different ways it is not a foregone conclusion, only that, it could be caused by the treatments). P.S. My mother has lymphedema and developed cellulitis, and it has nothing to do with treatment of cancer, so do be aware that there could be a coinciding health issue.
I'd definitely get her doctors in on this. Lymphedema, leads to skin integrity issues, and can become a cellulitis case, which in turn can become sepsis.
Hi Buster2024,
I see you joined us yesterday and appreciate that you are a caregiver to a patient that has one of the many different types of NHL (non-Hodgkin b cell lymphomas).
We share your concern about the lymphedema, and as Spark_Plug suggests getting your patient to a knowledgeable doctor very soon is important. Most of us have compromised immune systems and are very susceptible to infections, especially those in the skin and blood. So getting expert medical attention urgently is critical for us.
It is unclear what country you both reside in, and which of the NHLs your patient has. Those details would help us provide more accurate suggestions for you. You may want to fill in those details on your profile page here: healthunlocked.com/user/Bus...
And if you have time to read you may want to see these pages:
cancer.org/cancer/types/non...
cancer.org/cancer/types/non...
In general the indolent or slow growing NHLs are not curable but are mostly controlled with modern targeted drugs like Zanubrutinib, one of the 4 approved BTK inhibitors.
All of them have similar side effects, with slightly different ranges of each. Lymphedema is not a commonly listed side effect, but is more likely a result of a compromised immune system.
The drugs have side effects, and the ones we worry about a lot with BTK inhibitors, that seem to be true for all the approved drugs, to some degree, are things like bleeding, bruising, high blood pressure, and actually, an abnormal heart rhythm called atrial fibrillation.
Len
Hello & welcome, you are in the right place for real answers. I was on Zanubrutinib for 11 months of a 13 month BTKI regimen. I had the typical side effects & some of the not so typical side effects. My atypical ones were chest pain which was Pleurisy, a rubbing of my lung parenchyma. It was left untreated & developed into Left Pleural Effusion, Pneumonia vs Aetelectasis (as per CT Scan). That was still left under treated with just steroids when I clearly needed antibiotics. However from May 6th - Aug 2nd I could not convince 4 doctors; 2 Pulmonologist & 2 Oncologist of this fact, altho my symptoms were increasingly worst. It was a total of 3 ER Visits for Chest Pain in 3 Months when I gave up trying to convince them & just got some antibiotics for 10 days & then I began to improve.
However by that time I believe irreversible damage was done. Long story short I could not work out in my $15,000 Homegym for 8 months & put on 40lbs. Mind you I had just lost 92lbs deliberately over 6yrs by Lifestyle Changes of a Clean Whole Food Plantbased Diet & Consistent Workouts. I am a certified Nutrition & Fitness Instructor so I practiced what I preached everyday.
Again long story short, I am swelled up with abdominal & pedal edema, classic Congestive Heart Failure signs but they still want to debate it. I don’t negotiate with terrorist. After 13 months I had to stop Zanubritinib. Cardiology just agreed to Cardiac Rehab so awaiting the referral, I have a 4th Echocardiogram scheduled this week. We are checking my labs every 3 weeks & they are all over the place. I feel good, low energy but less pain.
My symptoms were severe joint/muscle pain that I contributed to the weight gain. I had severe left lateral rib pain that finally said something more sinister is going on, so the CT Scan showed my right mid & lower lung collapsing, unable to determine left main bronchus patency. No substantial pericardial effusion, etc which explained my pain. I was on 1/2 dose 80mg twice daily for 6 months, weaned down to 80mg daily for 3 weeks & then off since May 31st.
What would I do differently; I would make sure that all my symptoms were looked into early & that I would reduce the drug to where effectiveness & tolerance were equal. I actually love Zanubrutinib because of its effectiveness but in my opinion, they don’t want you saying anything negative about their new baby on the block. If a doctor could do more preventative stuff maybe I could of stayed on the treatment longer. You want to keep any excess fluids out of your lungs & movement, just walking is key. Drink 1 gal of water daily if not counterindicated, Lasix if indicated & compression wear if tolerated but move! #GODSPEED🙏🏾
ZANUBRUTINIB TREATMENT STARTS IN JANUARY
Zanubrutinib and water intake and sodium level
Zanubrutinib or O&V
Zanubrutinib 
