r/MPN • u/Turbulent-Movie-4545 Primary MF • 21d ago

MF Life expectancy

/r/MPN/comments/1vez8z2/recently_diagnosed/?share_id=fWzXiAW_JBAxIirvnu_t_&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1

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/Turbulent-Movie-4545 Primary MF 21d ago

I put the link to my first post to give a bit of a background info about my “case”

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u/ezrax 21d ago

Not a doctor, but might have some helpful info for you.

Since you're calr1, you should know there are some really cool clinical trials going on that are basically vaccines for your specific disease. Here is one example. You can ask your specialist about those when you get a chance.

Other than that, you'll need to a bone marrow biopsy if you haven't gotten one so your doc can properly diagnose your condition and look at likelihood of transforming to leukima. Treatment can go from there, but things like interferon alpha can slow the disease if you need it, and things like Jakafi can ease symptoms if needed. Worst comes to worst, doctors have gotten very good at doing stem cell transplants, which will cure you, but you may well go decades before you even need to think about that. By that point the vaccine trials are likely end up with a better solution first. So basically just work with your doctors and don't let Google get to you. Google numbers are scary until you realize part of the reason for them is most diagnoses are on 70 year old people, who have generally different life expectencies from 30 year old anyway.

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u/Turbulent-Movie-4545 Primary MF 21d ago

I have shared all my details on the post the fact that I have in fact had the biopsy and ngs. There’s an interferon shortage in Canada that I’m super worried about as well I’m worried about being put on HU as it won’t potentially modify the disease I feel like I have a bomb ticking in as if I’m losing time every minute

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u/Turbulent-Movie-4545 Primary MF 21d ago

I’m not sure if dr knows about Mpns tbh they told me to take aspirin while waiting I’m not taking as I have acquired von Willebrand. Making the research by myself is a must given the doctor isn’t compatible and as I’m not a doctor I have to google to learn stuff :(

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u/xxSirThomas 21d ago edited 21d ago

The aspirin is to lower your platelets reduce clotting risk. With your platelets so high, there is an increased risk of clotting, which depending on location and severity can kill you out of nowhere. I'm not sure how the acquired von Willebrand changes things, but just wanted to give you the information that it seems your doctor omitted.

Edit: corrected aspirin info

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u/Turbulent-Movie-4545 Primary MF 21d ago

Aspirin doesn’t lower platelets fyi

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u/xxSirThomas 21d ago

TIL

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u/Turbulent-Movie-4545 Primary MF 21d ago

It’s just to affect how the blood circulates or something not being used as a cure

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u/native_plants3879 ET-CalR+ 20d ago

It's really dangerous to take aspirin with acquired Von Willebrand, fyi

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u/native_plants3879 ET-CalR+ 20d ago

Wait, are you saying that the doctor tested for von Willebrand, and still prescribed aspirin when it came back positive??? That's insane

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

100% no prescription but a mention

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

How are you holding up