Primary Myelofibrosis diagnosis in 40’s

Posted by rspriggle @rspriggle, Jul 14, 2021

I was shocked to learn my diagnosis because of my age. So many people are diagnosed with PMF in there 60’s. Is there anyone else out there that was diagnosed with PMF before 50 and if so how does the prognosis look overtime. According to DIPPS I am currently placed at the high end of INT 1 (fatigue, enlarged spleen, anemia, bone pain). Thank you in advance for your help.

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Welcome, @rspriggle. I can only imagine your shock of receiving the diagnosis of primary myelofibrosis, especially in your 40s. I'm tagging @stevehurlburt and @stimme who also have experience with this diagnosis.

What treatments have been recommended for you? Have you had to take extended time away from work?

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Hello, @spriggle (surely that can't be your name!) and thank you Colleen for asking me to say something.
I was diagnosed in 2011. As a point of interest I only began taking medicine (Jakavi ruxolitinib) just over a month ago – to reduce my spleen size. Before this, I took only high doses of supplements – especially liposomal vitamin C and medicinal mushrooms (amongst others) advised by a medical herbalist. My haematology consultant, a good man, said in front of a medical student recently, "whatever you are doing, keep doing it, you are unusually stable"). In fact, I feel fine. I continue teaching online (the violin) and have been decorating the house as well as gardening despite also having prostate cancer (reduced PSA from 15.5 to 3.5 in a year with saw palmetto complex and elixir supreme (mushroom complex) added) and also spinal stenosis. A bit of a bother at times but don't let these things get you down. I recovered from epilepsy 1953-85, a foolish diagnosis of schizophrenia in 1973 (essentially this was confusion from a stressful career with no life skills or communication ability – another story – which I worked on successfully) and, with good therapy a hemp cream and Anadin Extra I keep the physical problems at bay. I performed the 1st movement from Vivaldi's Spring two weeks ago and hope to get back to doing recitals when lockdown eases. Don't worry. Build health and have faith.
if you feel you want to ask more, please don't hesitate.
Best wishes, Roger

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@colleenyoung

Welcome, @rspriggle. I can only imagine your shock of receiving the diagnosis of primary myelofibrosis, especially in your 40s. I'm tagging @stevehurlburt and @stimme who also have experience with this diagnosis.

What treatments have been recommended for you? Have you had to take extended time away from work?

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I was screened for a clinical trial almost right away and qualified for the double blinded clinical trial. It includes the combination of Ruxolitinib (Jakafi) and a study drug called Navitoclax/Placebo. I also receive an EPO shot 1x per month and take an 81 aspirin daily. My lifestyle had to change completely. I had to retire early from teaching and stop all classes I was attending. It’s been very difficult but I am able to now rest when needed (which is often) and my quality of life has significantly improved since resigning and being in the clinal trial. I have an amazing hematologist/oncologist and I also see a bone marrow doc at MAYO Clinic to keep an eye on things. My hope and prayer is that I will not have to go through an allogenic transplant anytime soon.

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@stimme

Hello, @spriggle (surely that can't be your name!) and thank you Colleen for asking me to say something.
I was diagnosed in 2011. As a point of interest I only began taking medicine (Jakavi ruxolitinib) just over a month ago – to reduce my spleen size. Before this, I took only high doses of supplements – especially liposomal vitamin C and medicinal mushrooms (amongst others) advised by a medical herbalist. My haematology consultant, a good man, said in front of a medical student recently, "whatever you are doing, keep doing it, you are unusually stable"). In fact, I feel fine. I continue teaching online (the violin) and have been decorating the house as well as gardening despite also having prostate cancer (reduced PSA from 15.5 to 3.5 in a year with saw palmetto complex and elixir supreme (mushroom complex) added) and also spinal stenosis. A bit of a bother at times but don't let these things get you down. I recovered from epilepsy 1953-85, a foolish diagnosis of schizophrenia in 1973 (essentially this was confusion from a stressful career with no life skills or communication ability – another story – which I worked on successfully) and, with good therapy a hemp cream and Anadin Extra I keep the physical problems at bay. I performed the 1st movement from Vivaldi's Spring two weeks ago and hope to get back to doing recitals when lockdown eases. Don't worry. Build health and have faith.
if you feel you want to ask more, please don't hesitate.
Best wishes, Roger

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Thanks Roger for your kind words. Congrats on keeping things rolling! I too hope to renew some goals soon. My name is Rene’😊

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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

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@rspriggle

I was screened for a clinical trial almost right away and qualified for the double blinded clinical trial. It includes the combination of Ruxolitinib (Jakafi) and a study drug called Navitoclax/Placebo. I also receive an EPO shot 1x per month and take an 81 aspirin daily. My lifestyle had to change completely. I had to retire early from teaching and stop all classes I was attending. It’s been very difficult but I am able to now rest when needed (which is often) and my quality of life has significantly improved since resigning and being in the clinal trial. I have an amazing hematologist/oncologist and I also see a bone marrow doc at MAYO Clinic to keep an eye on things. My hope and prayer is that I will not have to go through an allogenic transplant anytime soon.

Jump to this post

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.

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