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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 loriskt @loriskt

@tomatack
Boy, that's quite a drive you make every 90 days. I went to cllsociety.org and found a CLL specialist, Dr. Stephen Spurgeon, at OHSU in Portland, Oregon who is taking new patients! I live about two hours from there. I will call Monday and see when I can get in. Thank you very much for suggesting that. I have had the oncologist at Kaiser for over a year and I think I may have actually seen her one time.
I hope your ongoing treatment is successful and you live long and prosper!

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Replies to "@tomatack Boy, that's quite a drive you make every 90 days. I went to cllsociety.org and..."

@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.