Primary Myelofibrosis diagnosis in 40’s

Posted by rspriggle @rspriggle, Jul 14 7:19am

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.

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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