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.