Primary Myelofibrosis diagnosis in 40’s

@scottmatteo
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.

@kasey78 glad you’re getting help at Mayo. They saved my life; one year post BMT in two weeks. Not that they let you choose but I highly recommend Dr Shah. Especially if you’re willing and able to laugh in the face of the potential diagnosis and treatment… he was honest with good or bad news with an ability to explain process and complicated issues plainly. Keeping me and my wife calm as complications came up and subsequently treated as needed. You’re at an age that isn’t typical for the diagnosis similar to me and I took it as a blessing as we are able to recover quicker than those a few decades older.

@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

Thanks for your response.
No I've not made any changes,

I am interested in the response above with @stimme who has prostate cancer. I have that as well.

I am working full-time as a Business Law Consultant and see no need to stop at this stage.

It would be inetersting to get a fuller response from @scottmatteo what changes he made in his diet.

I am enjoyong this site.

Hi @raglus, I'm tagging @scottmatteo to make sure he sees your question about dietary changes.

Have you made any dietary or lifestyle changes since being diagnosed with myelofibrosis?

What dietary changes did you make to help with myleofibrosis?

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.

My mother had CLL at 50, and my niece was diagnosed with ET at 15….then I was diagnosed with PMF at 65…but these are not hereditary? Mother passes at 95, niece is 36, well- managed and considering options to safely get pregnant and I have tried Hydrea then Pegysus/interferon….then returned to Hydrea. Each medication has its pluses and minuses and the disease it so rare and research so inadequate…well, hard to tell long term prognosis. But I too have an oncologist and transplant specialist at Mayo monitoring me. I also go to a kidney guy to keep up on spleen and kidneys. I feel like my life is visiting doctors sometimes…but prognosis for “long term” and that can mean over 20 years. I belong to some blogs with other PMF thrivers…their stories can inspire you….early diagnosis(40’s) and long term living 20+ years. I had prostate cancer at 50 and know how you feel…but, ya deal with it one day at a time and find yourself surviving and thriving. High level 1 is still level 1. Be positive and good luck.
Steve

Good luck Rene.