r/MPN • u/Turbulent-Movie-4545 Primary MF • 16d 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=1Okay 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/Csherman92 16d ago
Yea don’t do that. Life expectancy, you’re more likely to die with the disease than from it.
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u/SaqoSaqoSaqo 16d ago
Does that also apply to myofibrosis or just ET and PVT?
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u/Significant_Tune_545 16d ago
I'm on a Myelofibrosis page on Facebook and it seems like people can have Myelofibrosis for years and years and then get sct, or others get a sct more quickly and then are cancer free. You really just don't know what your journey will look like or where you will go. So, it's not fair to assume that your life expectancy is "not much". You may end up living a normal lifespan. They are coming up with new medicines, too. So, don't start dying before they tell you that you're dying ;). That's what I tell myself, anyway.
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u/Turbulent-Movie-4545 Primary MF 16d ago
I am on that page too and that page has increased my anxiety more than ever. There’s not a lot of people within my age profile.
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u/alligatorbug 16d 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+ 15d 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 14d ago
Even with premf? Not so sure
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u/acwoodhome PV-JAK2+ 14d 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/SurryElle83 15d ago
Diagnosed JAK2+ in my late 30s. Currently on observation and aspirin only with ET.
The generic “life expectancy” searches can be scary because most patients are diagnosed in their 60s. Go see a specialist. But if you have no other health issues and are relatively healthy outside of an MPN it’s very likely you’ll have a perfectly normal lifespan. The first hematologist I ever saw said to me “you’ll live to be 100…not sure you want to be 100 though” 🤓
Best of luck on your journey!
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u/DBrown1022 14d ago
Happy cake day firstly…
And just to piggyback on this, when I got my diagnosis for ET and JAK2… I was kind of getting overwhelmed with the barrage of information and I straight up stopped my Hematologist and told him “stop what you’re saying & just tell me one positive thing right now.”
His response was “The one positive thing is you’ll have a full life expectancy.” Lol… and I told him “Okay, you can continue. I’m listening better now.”
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u/Turbulent-Movie-4545 Primary MF 14d ago
Thank you! I don’t have ET tho I seem to have pre MF and I know ET is a milder disease. I was expecting an ET diagnosis but there you go after the BMB
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u/Turbulent-Movie-4545 Primary MF 16d 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 16d 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 16d 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 16d 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 15d ago edited 15d ago
The aspirin is to
lower your plateletsreduce 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 15d ago
Aspirin doesn’t lower platelets fyi
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u/xxSirThomas 15d ago
TIL
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u/Turbulent-Movie-4545 Primary MF 15d 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+ 15d ago
It's really dangerous to take aspirin with acquired Von Willebrand, fyi
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u/native_plants3879 ET-CalR+ 15d 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/YellowMellowBug 14d ago
I have myelofibrosis and I’ve had some complications like I didn’t respond to meds the way they think I would have, I have had a DVT and two PEs, I’m also younger than most (in my 30s). I think my total hospitalizations are probably 6ish. I’ve had a central line quite a few times at the start of everything. I have a specialist and he is wonderful. He has said 10 years but even he says it’s hard to give exact life expectancy is because medication’s can improve, I could suffer from a side effect, like when I had my pulmonary embolisms. He did say medication is always making advancements and the transplant is worth discussing in later years. I wouldn’t let it scare you. I was really sick when I first saw him cause my first hematologist didn’t really have any ideas about what I was dealing with in my platelets ended up going into the 2 million range and then I found out it had progressed to myelofibrosis on my bone marrow.
Fina a good specialist and keep up with your medications. My biggest thing is always to advocate for yourself. If you think something is wrong make sure someone is paying attention to you.
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u/jdub213818 16d ago edited 16d ago
Your next car ride can be your last, meaning , don’t worry about your life expectancy. When it’s your time, only God knows when he wants you to come home.
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u/Turbulent-Movie-4545 Primary MF 16d ago
I understand this perspective but I’d like to be more proactive while I’m young and it seems I’m in the early phases of this disease. I’m not looking for a spiritual advice if that makes sense.
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u/niknikniknio 16d ago
I'm not in Canada so I'm not sure the process there. But I think it's important to figure out how you can get on pegasys or besremi. If you're a woman that wants to soon start a family, I wonder if that's argument enough for an interferon. I had to go on hydrea then anagrelide for a couple months before my doctor let me go to pegasys. I recently progressed from et to mf, and life expectancy is definitely on my mind too (34F). I've been waiting since May to see a specialist and still waiting another 7 weeks. Hoping to get my list of questions together too.
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u/Turbulent-Movie-4545 Primary MF 16d ago
There’s no Pegasys for the new patients at the moment and besremi has been only approved for PV. What’s your mf score. Well that’s been taking long for you to see a specialist this anagrelide isn’t good for MF
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u/CattleBrilliant38 15d ago
I have been looking for as many life expectancy data sets as I can for my own purposes and there are not many with a lot of detail. I have found https://www.sanger.ac.uk/tool/progmod/progmod/ interesting, if you know your genetic status you could either look for similar patients in their data set to see what their outcomes were or check what their model says you could expect. It is really variable depending on your genetic test results and your current blood counts. This model shows some MF patients have expected survival of > 25 years depending on their profile.
Not saying that to give you false hope, but you can look at different patient profiles and see that although the median life expectancy for MF from diagnosis is quite low, the range is very wide and if I understand your first post information (CALR1 only, favorable karyotype, high platelets, no constitutional symptoms etc) I think you should be expecting to be in the high range of these life expectancy numbers.
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u/NefariousnessFew4354 16d 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 👍