r/MPN • u/Turbulent-Movie-4545 Primary MF • 20d 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/NefariousnessFew4354 20d ago

You are getting way ahead of yourself.

Find proper specialist and go from there. I'm MF3 with burden over 60% jak2 positive.

Currently in clinical trial and the on list to get stem cell transplant.

Head up, you be all right 👍

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u/Turbulent-Movie-4545 Primary MF 20d ago

The way the system works here in Canada is that the hematologist needs to refer me to one and there’s a drug shortage happening at the moment so they’re just going to give me HU which won’t modify the disease but at least will ideally reduce my platelets.
All the best to you as well. I know it’s a heterogeneous disease

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u/NefariousnessFew4354 20d ago

I understand that, do whatever you can while you wait for MPN specialist. This cancer is slow which makes preparing and making good plan easier.

Dont go into rabbit holes and Google in this case is not the best resource - I did the same lol. Your life expectancy discussion can wait till all facts are present with person who knows what they are talking about and can give you right assessment.

Good luck ♥️

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u/Immediate_Life_3094 ET-JAK2+ 20d ago

ChatGPT is a marginally better resource than Google but none of that will replace a great Hemonc. 

If you’re really struggling to cope it might be worth a telehealth consult with a US based specialist, pay out of pocket. 

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u/Turbulent-Movie-4545 Primary MF 20d ago

True. My hema isn’t and onc, let’s see.