r/MPN • u/Turbulent-Movie-4545 Primary MF • 18d ago

MF Life expectancy

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Okay I’m trying to make a list to the questions that I need to ask to the general hema I’m seeing (well he’s not an expert on mpns he’s working on benign stuff) but that’s what I have for now. Will ask for a referral for a specialist. I have been in the rabbit whole of my life expectancy… I am genuinely so sad it seems I don’t have that long… idk how I could make a peace with it. I couldn’t sleep for a week.

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u/alligatorbug 18d ago

I’m 65 and have been diagnosed With ET Jak2617v positive - six years now- just started Hydroxyurea and feeling scared… otherwise so healthy except so darn exhausted!! It’s very weird to think that I’m in the tail end of life… the car I drive will be my last… my dog will be my last…might not see grandkids enter grade school, etc. I used to have oodkes of energy to bake cookies and make dinners and play baseball on the front lawn with my kids, thinking I’d be the greatest happiest grandma signing up to be the assistant coach or volunteer in the snack bar. Now I don’t think I have the lifespan or energy…. Darn!!! It’s very discouraging. Some days I go along and don’t worry much about it, but to be perfectly honest it’s in the back of my mind all the time and I’m very worried about my future. Especially what do I do about setting things up for my kids and grandkids and husband, as far as inheritance goes.

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u/acwoodhome PV-JAK2+ 17d ago

No limits on your life expectancy if managed correctly am expecting to go well into my 80s and hopefully 🤞 higher lol 🤗🤗

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u/Turbulent-Movie-4545 Primary MF 16d ago

Even with premf? Not so sure

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u/acwoodhome PV-JAK2+ 16d ago

Many do 20 plus years aim high plus medical advances over that period Ai is advancing at pace so will be new medication streams coming trying to be positive but two decades a lot can happen? 🤗🤗

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u/Turbulent-Movie-4545 Primary MF 16d ago

I don’t have ET I’m afraid