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Anyone have chronic lymphocytic leukemia (CLL)?

Blood Cancers & Disorders | Last Active: 30 minutes ago | Replies (303)

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Profile picture for Bigfoot @tomatack

@loriskt Smart move. This disease isn't commonly seen in local clinics and the treatment landscape is changing nearly annually. The local docs just don't seem able to keep up. I trust you will see a difference. I don't know the doctor at OHSU, but I will offer Dr. Sharman at Williamette is one of the leading experts in the CLL field and well respected worldwide. The most important thing to understand is your CLL's IGHV mutation status. Mutated-IGHV is a good prognostic sign and unmutated-IGHV a less favorable sign (seems counter intuitive, but it's the one time mutated is a good thing in cancer). Both forms respond to the new treatments, but those of us who are unmutated will tend to have more aggressive disease and need more therapy.

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Replies to "@loriskt Smart move. This disease isn't commonly seen in local clinics and the treatment landscape is..."

@tomatack
My IGHV mutation status is "mutated", thank goodness. Cytogenetic abnormalities showed abnormal signal patterns consistent with mono-allelic deletion of 13q in 88/200 (44%) of cells analyzed. All this indicates "long survival". I just hope I don't have to live the rest of my life feeling like I have the worst hangover in history (and I haven't drank alcohol for 10 years)!

Thanks for letting me know about Dr. Sharman. I'll check for appointments there too.