There is a lot of amazing info in this group. Kudos to many of you have researched experimented and brought forward alternatives to expensive and many times harmful drugs that may or may not help in our fight against MF. My father passed in June from MF, he was in later stages of MF when diagnosed though numerous symptoms existed for years prior. His experience with Jakifi was horrendous, coming off Jakifi nearly killed him and he never fully gained his previous level of health.
Seeing and knowing the symptoms of MF I pushed my oncologist for further testing of my enlarged spleen that was discovered during a follow up ultrasound post melanoma treatment. It took pushing the oncologist to complete a simple JAK2 test, which I have. My new oncologist ordered a bone marrow biopsy and further genetic testing. Confirmed PMF, though early, it is present. At 47 I am young for the disease and am still wrapping my head around the diagnosis. Prognosis from Dr. this week and will discuss options then, but will certainly be discussing some of your experiences and alternatives to the "approved" methods.
Thank you all for sharing your stories and being on the forefront of alternatives.
Glad you popped over to this discussion group, Scott. I'm tagging fellow myelofibrosis members like @teriberi123 @stimme @wellness3070 @stevehurlburt @onamission
Given that you are only 47, you might be interested in this discussion started by @rspriggle who was diagnosed in their 40's.
– Primary Myelofibrosis diagnosis in 40’s https://connect.mayoclinic.org/discussion/primary-myelofibrosis-diagnosis-in-40s/
What questions will you have for your doctor's appointment coming up to discuss treatment options?