Looking for recommendations of doctors with expertise in CMML

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?

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

Hi Joe, I don’t have CMML but I did have AML, now in remission after a bone marrow transplant. So hopefully some of the other members Colleen tagged will respond and have some answers for your questions. But I have spent a great deal of time at Mayo-Rochester receiving treatment and met many hematologist oncologists during my stay.

I’m not sure whether or not Dr Patnaik sees patients either. There’s no harm with inquiring for an appointment with him though.
I’d have no hesitation in recommending any of the hematologist oncologists at Mayo Clinic. All of the doctors and their teams encountered in my almost 3 years of treatment are world class and relentless in finding answers. I’ve experienced first hand the flawless, collaborative effort between specialists during my leukemia battle and bone marrow transplant. Both my husband and I are so impressed with the outstanding care I receive.

Once again, here’s the link @colleenyoung provided to submit an application for a second opinion.
http://mayocl.in/1mtmR63
Do you have any questions about a possible visit to Rochester?

Lori,
It's good to hear that your AML is in remission following BMT and treatment. I'm sure that was a difficult journey for you. Thank you for sharing your story and your high regard for the docs at the Mayo Clinic.
It's a bit early for me to know if I'll be coming to Rochester, but I do appreciate that you're open to questions about that.
Wishing you well.
Joe

Hi Joe,
I was diagnosed with CMML 0 after a BMB in late July of 2019 at Dana Farber Cancer Institute in Boston. Rather than tell my whole story again, may I refer you to a topic that I started 2 years ago and was last commented on February 2. The title is Adult Langerhans cell histiocytosis and CMML. Both are very rare diseases and I decided very early that I needed to seek care at a clinic with very specialized physicians and researchers.
I chose Dana Farber since we can drive there in about 6 hours and they have a Center for Adult Histiocyte Disorders and I have been going there for 5 years. I have a team, led by Dr Eric Jacobsen,that I see there at each visit. I see them together in the same room, usually with residents and fellows as well and they brainstorm, often with me in the room. When I visited in June of 2019, my platelets were 2! This was considered an emergency and I was sent immediately for a transfusion of platelets . A follow up bone marrow biopsy the next month indicated CMML 0. I already knew that I had 2TET mutations and a BRAF mutation, as a result of heme panels done for the LCH.
I was given a referral to Dr Daniel DeAngelo, the chief of the leukemia section at the clinic. I have been very happy with my experiences there and they are more than happy to work with my local doctor and they collaborate with doctors at other institutions. This is a benefit of having a rare disease, since the interested doctors are a small group and work together on research, as well as seek suggestions for treatment.
I am 78 now and so not a candidate for a stem cell transplant. My 3 diseases are all rare, but seem to be stable after 5 years (LCH) and 3 years (CMML). My thrombocytopenia has not become severe again. I continue to take hydroxyurea and to have regular blood labs to monitor my response.
If you have questions for me, I will try to answer.

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?

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.

Hey Joe, how are you doing?

I have a friend recently diagnosed with CMML-1 and she may request a second opinion from Mayo. Her current doctor doesn’t plan to start any treatments and her next appointment is in 4 months. She will only get blood tests every 2 months. Is this standard for CMML? She is concerned that nothing is being done to treat her and I am too. Can anyone share their experience with this disease?

Hi @edb1123 I was wondering how your friend is doing with her CMML diagnosis? Because CMML is considered a chronic form of leukemia it is generally slower to progress than the AML that you and I had. Depending on the status of your friend’s CMML, it may be that 2 months is appropriate for her condition. The doctor will view trends in her blood numbers and monitor for changes that way. If they see any progressive upward or downward movement after subsequent tests they will reassess. Down the road there are treatment options available, the ultimate maybe being a BMT which you’d be able to offer her a lifeline with your experience. How are you doing these days? How are your gvhd issues?