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Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
April 10, 2025
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Answer Summary

Members shared their experiences with Zanubrutinib for CLL and MCL, with most reporting that the medication keeps the disease stable or... Read more

Members shared their experiences with Zanubrutinib for CLL and MCL, with most reporting that the medication keeps the disease stable or dormant rather than achieving complete remission, and that noticeable improvement can take anywhere from several months to nearly two years. Several members described common side effects including fatigue, bruising, petechiae, increased infections, and shortness of breath, while emphasizing the importance of regular monitoring through bloodwork and scans every few months. A recurring theme was patience and persistence, with encouragement to stay on the medication as long as it's working, keep fighting through fatigue by staying active when possible, and maintain hope while understanding that this is a long-term therapy journey.

A MyLymphomaTeam Member

Hi Bill. I hope your scans turn out well! Yes, during the time I’ve been on BRUKINSA, I’ve experienced quite a bit of bruising, petechiae, and fatigue. I seem to get infections very easily which is very common with this drug. Blood draw last weekend indicated everything was stable. Later in June, I’ll have a CT done of my abdomen, neck, etc. to check for new lymphadenopathy (hopefully not), splenomegaly or any spread of cancer. I did have a gene panel and although it did show some mutations nothing like TP53 which I think might mean there is some resistance to the BTK inhibitor. Since everything’s stable, I’m hopeful the drug continues to do its job and there’s been no spread of the cancer. The plan for me now is unless something changes, blood draw every month and scans every three months. I’m hoping for good results for you and that the drug continues to have minimal side effects.

May 30, 2025
A MyLymphomaTeam Member

My husband is 87 and has CLL and has been on Brukinsa for almost a year. He feels great and bloodwork shows improvement, but as other people have replied, it's always in the system. As long as you feel good on the meds keep taking them.

May 30, 2025
A MyLymphomaTeam Member

Thanks- that’s what I understand and I know it varies from person to person. I was interested it what other people’s thoughts were.

April 10, 2025
A MyLymphomaTeam Member

I was not tired to much, I suggest you keep going go to the gym , just keep going you may be tired - but fight it , this might help you, also try your best to live a normal life.

September 30, 2025
A MyLymphomaTeam Member

I have been on bruskina since last dec. my blood work has gone up and down. Finally my last blood work showed no flags.
But dr says stay on medication.

I am very exhausted. A real exhausted feeling.

I have fibromyalgia and chronic fatigue, but usually have been able to rest and I can pick up for an event.

But last 5 years, just cannot pick up.

Wondering if anyone else has fatigue.

September 29, 2025

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Chicago, IL