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Looking for recommendations of doctors with expertise in CMML

Blood Cancers & Disorders | Last Active: May 6 8:24pm | Replies (9)
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@colleenyoung

Welcome @joesim. I think you know what I'm going to say. I recommend contacting Mayo Clinic. Mayo's multidicsiplinary team approach means you'll have not just one expert but a group of experts working with you. For example Dr. Patnaik (https://www.mayoclinic.org/biographies/patnaik-mrinal-s-mbbs/bio-20055415) is a physician scientist with the Division of Hematology and a leading researcher and physician specializing in Chronic Myelomonocytic Leukemia (CMML)

To self-refer and ask questions about submitting a request for a second opinion, please visit http://mayocl.in/1mtmR63
Your oncologist can also make a physician referral, which can sometimes be easier for the patient.

I'm also tagging @tbone45 @jzier @cblowers1 who have experience with CMML to offer their thoughts where they received care as well as @loribmt who is familiar with the hematology department at Mayo.

Joe, is this a new diagnosis for you? Have you had been given a treatment plan?

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Replies to "Welcome @joesim. I think you know what I'm going to say. I recommend contacting Mayo Clinic...."
joesim | @joesim | Feb 21, 2022

Thank you, Colleen. I appreciate you very informative reply.
I recognize Dr Patnaik's name from his published papers including his recent 2022 CMML Review. I've also seen his Mayo profile but couldn't ascertain whether or not he saw patients or just consulted on their cases. I do see him as a top prospect for a second opinion. Perhaps @loribmt can clarify.
I was diagnosed this past September as CMML-0. Monocytosis, cytopenias as well as TET2 and SRSF2 variants being defining factors. Dysplastic or Proliferative subtype is not yet known. Currently wait and watch. As yet I am relatively symptom free but do expect that will change as the disease progresses. Like many with this diagnosis my age at that time will likely preclude a transplant.
When I do go for a second opinion, I expect it will be with a physician referral from my current hematology oncologist. I'm on the east coast but prepared to travel.
In the meantime, I'd love to hear any thoughts on CMML, those docs and trials from @tbone45 @jzier @cblowers1 and others.
Thanks again for your reply and helping.
Joe

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