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Profile picture for minnesotajim @minnesotajim

@panevills Having read the various comments here, my first question is to inquire if you are seeing a true CLL expert. Since you question if you even have CLL, have you had the various tests (FISH, flow cytometry, etc.) performed? I was diagnosed with CLL nearly 20 years ago and treat with CLL experts at Mayo. Over 8 years ago I went on Zanubrutinib (now FDA approved as Brukinsa) in a clinical trial. I remain on the drug today with very few side effects. "Watch and wait" is a standard procedure for many CLL patients, depending on various markers. Make sure you are getting the best advice before starting any treatment. Check out the list of doctors at cllsociety.org and at least get a second opinion before starting anything.

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Replies to "@panevills Having read the various comments here, my first question is to inquire if you are..."

@minnesotajim
I have taken Brukinsa for 15 mos & bruise extremely easily, have dry mouth, dry nails & my hair breaks off. Also, I have swelling & Purpura on one foot & calf. It has really worked to bring down my white blood cell count & lymph lumps.