Primary Myelofibrosis diagnosis in 40’s

I too was diagnosed with PMF in my 40s at 47; though that is truly the confirmation date as I have had mild symptoms for years. The date of confirmation is almost 2 years from my stage 3 melanoma diagnosis. My enlarged spleen was found during a post immunotherapy treatment CT scan (previously stated this was US, but went back to verify) by chance. The CT was to verify no spread of melanoma to the chest (discovered in my neck), but the CT went far enough to see a portion of enlarged spleen. Originally Dr. was not concerned, however my dad was in the last stages of MF and I knew the enlarged spleen was a known symptom. I pushed for more testing and I now have a new oncologist!
Bone marrow biopsy confirmation last week shows some fibrosis, but blood numbers other than platelets are normal. My spleen has shrunk dramatically in 10 weeks (around 40% decrease).... some dietary changes, some lifestyle changes, but no meds nor vitamins other than Vit D.
Meet with Dr. tomorrow, will discuss some of stimme and onamission's liposomal mixes that give me hope for continued stability as I would like to stay away from the drugs as long as possible.

@scottmatteo
I have not recieved a diagnosis but reading your comment sounds like me. I am 47 years old and have been having bone pain, fatigue, bone marrow biopsy show increased atypical megakaryocytes and reticulin mild to moderate fibrosis MF 1-2 . However, because all my labs were normal except my platelets continue to trend down and i didn't have enlarged spleen or the mutation ....I guess i didn't meet the requirements for diagnosis. my hematology doctor suspected autoimmune disease. I see rheumatologist and after 21 test everything was negative /normal. My symptoms got worse and i started having pressure marks on body, along with platelets still trending down (not emergency but now thrombocytopenia but hgb is normal) and mild enlarged spleen 12.8 i have been referred to Mayo because my hematologist feels i need higher care. I have my first appointment June and really hope I get answers. Thank you

@scottmatteo
I have not recieved a diagnosis but reading your comment sounds like me. I am 47 years old and have been having bone pain, fatigue, bone marrow biopsy show increased atypical megakaryocytes and reticulin mild to moderate fibrosis MF 1-2 . However, because all my labs were normal except my platelets continue to trend down and i didn't have enlarged spleen or the mutation ....I guess i didn't meet the requirements for diagnosis. my hematology doctor suspected autoimmune disease. I see rheumatologist and after 21 test everything was negative /normal. My symptoms got worse and i started having pressure marks on body, along with platelets still trending down (not emergency but now thrombocytopenia but hgb is normal) and mild enlarged spleen 12.8 i have been referred to Mayo because my hematologist feels i need higher care. I have my first appointment June and really hope I get answers. Thank you

@kasey78 ask as many questions as possible. The team in BMT at Mayo is large educated and well oiled. Pre BMT you’ll meet with a nurse and Doctor. Then many great PAs NPNs etc. nursing staff is phenomenal caring and of course familiar with what to expect. If you’re pushing toward a transplant you’ll want to get DNA testing so they can find a match for you the longer they have to look the better. Please ask anything I’m happy to answer the best I can. Many websites can give you lists of questions etc MPN etc Mayo has a good list. There is a book at Mayo that is a bit dated but thorough in what to expect at each stage of your journey. Think it was a coupon for a free BMT book and I’m sure you could ask one of the nurses. Be positive strong and know it can always be worse no matter how shitty you feel. You can do this and thrive.