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Looking for recommendations of doctors with expertise in CMML
Blood Cancers & Disorders | Last Active: Jul 3 10:02am | Replies (14)Comment receiving replies
Thank you @cblowers1, for responding to @joesim about your experience with CMML and Adult Langerhans cell histiocytosis. I’m so happy to see that you’re stable right now and doing well. That’s so encouraging and really helps other members when they realize someone else is going through a similar experience.
I found the discussion you started. Here’s the direct link for Joe and future readers. (In the discussion heading, you’ll find 3 … at the bottom. Click on those and you’ll see an option to copy link to clipboard. Then you can easily paste that link in a reply)
https://connect.mayoclinic.org/discussion/adult-langerhans-cell-histiocytosis-and-cmml/
It’s sounds like you have a great team working with you! How often do you return for a visit with your doctors?
Replies to "Thank you @cblowers1, for responding to @joesim about your experience with CMML and Adult Langerhans cell..."
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I have been relatively stable for the last two years and have visited Dana Farber twice a year (after 9 trips in 2019) and my local hematologist/oncologist twice a year. Blood lab results are sent to all doctors each time they are checked. I had some telemedicine visits during 2020 and early 2021, but this is no longer possible, since I live out of the state of Massachusetts.
I visit Mayo Clinic at least annually for a multi day annual physical. I see Dr Go during those visits. It is just too far for my regular care.
I have been visiting Mayo Rochester since 2001 when we lived in Minneapolis. I have participated in several studies over these years and continue to give blood samples, etc for those. None have involved medication trials, but I have participated in the studies for Cologuard and molecular breast imaging, as well as studies of blood diseases, etc.