Sep 27, 2018 Latest post:
Aug 23, 2022
I was diagnosed with a bone marrow disorder in 2013, a benign form of Leukemia called Polycythemia (PV), with Early Stage Pre-Fibrotic Myelofibrosis MF. I remained stable for ~3 years.
During 2016 through 2017 I transformed to MF, when the AXL1 and Trisomy 8 mutations were found. By 2018 my prognosis was considered Very High Risk - with a shortened life expectancy (< 2 years), if I did nothing. The only cure for MF is an Allogenic hematopoietic stem sell transplant.
I attempted to undergo a transplant with Mayo Clinic Phoenix, but they discontinued Jakafi too fast and triggered an acute event with life threatening heart and lung issues and high fever that placed my transplant on hold so I fired them for being careless. I then interviewed three transplant centers and chose Seattle Cancer Care Alliance (SCCA)/Fred Hutchinson who performed a successful Allogenic HSCT on May 10th, 2019, when my perfectly matched donor's stem cells were infused. My transplant experience was uneventful and I am now 3 1/2 years post transplant! Life marches on with huge thanks to Ethan, my donor, who saved my life. An extraordinary young man.
In 2022, my routine cancer surveillance found a mole on my back was diagnosed as "invasive metastatic melanoma"! Within 2 months that mole and nearest sentinel lymph node were excised. My initial diagnosis of the lymph node was positive for metastatic melanoma. 2 months later I learned the pathology department made a mistake and sent my lymph node for another opinion. Apparently it was not metastatic and a PET scan was also performed and found NO CANCER.
I am now vigilant and on heightened alert! MD Anderson in Gilbert service will not be pursued for Melanoma or any other cancer scares.