Life expectancy essential thrombocytosis - MPN Voice

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Life expectancy essential thrombocytosis

Irishgal12
Irishgal12

Sorry if this upset anyone

How long is life expectancy with et I read 33 year if under 60 at diagnosis am only 32

55 Replies
oldestnewest

As far as I know your life expectancy is not much shortened. You are much more likely to go to the funerals of your haematologist than the opposite !

Irishgal12
Irishgal12
in reply to Manouche

Love this. I got scared when I read

28yr ☹️

Irishgal12
Irishgal12
in reply to Aby1990

Really

Aby1990
Aby1990
in reply to Irishgal12

Yes

Irishgal12
Irishgal12
in reply to Aby1990

There are mixed reports some people say near normal lie expectancy

Hmmm79
Hmmm79
in reply to Aby1990

That's not true, Aby! There shouldn't be any effect on life expectancy

It varies person to person

Irishgal12
Irishgal12
in reply to Aby1990

Did your consultant tell u

Aby1990
Aby1990
in reply to Irishgal12

My doc told me that i will be having normal life expectancy with this disease; but there is a chance for progression to other form of disease..

Irishgal12
Irishgal12
in reply to Aby1990

Slim chance I think

What were your platelet count

Aby1990
Aby1990
in reply to Irishgal12

600-750 fluctuating

Mine have always been 450 454 for years sometimes 480 then down 450 but this time 574 I dont know cause

Hi Irishgal12, have a look on the mpn voice website which has trustworthy information. As far as I’m aware anyone with an mpn has a normal life expectancy if monitored and treated if necessary. I know there are a lot of folk on this forum who have been around for a lot of years.

Kindest regards Aime xx😻😻

Hi there Irishgal. I can see you haven’t stopped Googling since you last posted(!) and you’re still worrying yourself into a state of high anxiety.

When is your haematologist appointment? I’m assuming you haven’t seen him / her yet and haven’t yet undergone any further tests or got a diagnosis of an MPN.

If indeed you are diagnosed with an MPN then the chances are you will live out an entirely normal lifespan. Clearly none of us knows what might lie ahead. We still have to keep crossing roads!

So the advice is as ever, rather than diverting yourself with worrying about things that are not, or may never be, enjoy your life right now. You’ve told us you have a young family and you’ve said you’d like more kids, so please focus on these wonderful, life enhancing things.

Perhaps it’s worth a visit to your GP to see if you can get some support to help you manage your anxiety. This might help put you in a stronger frame of mind to deal with the tests and outcomes in the weeks ahead.

Wishing you all the best.

Irishgal12
Irishgal12
in reply to Ebot

I get bloods done this week haematologist in 2 weeks. Been to gp on medication for anxiety just really not coping x

Ebot
Ebot
in reply to Irishgal12

I’m really sorry you are having such a hard time managing your anxiety right now. Is there anyone you can talk to who might be able to help you through this?

I doubt there is anyone on this forum who won’t recall feeling anxious around the time of diagnosis. It can be an extremely stressful time - emotionally and physically draining. There’s the inevitable battery of tests, the waiting for results, the meeting with the right specialists, hearing and processing the diagnosis. Endless questions reeling around inside your head.

However, you have the great fortune from what you have told us to have a watchful GP who has set you on a very straightforward path to a haematologist and that all the appropriate tests have been organised. You also have the great fortune to be young, otherwise healthy and with a young family to need you and divert you.

As I’ve said before I doubt there is anything anyone on this forum can say in reply to your many questions that will reassure you right now.

I’m sure life is busy with a little person to look after so please just plan some nice things to do over the next fortnight, look forward to them and tick them off one by one. Before you know it, you’ll see the haematologist and you’ll be able to ask the right questions and get some sound answers.

Irishgal12
Irishgal12
in reply to Ebot

Hopefully I wont be diagnosed

Ebot
Ebot
in reply to Irishgal12

Entirely possible. So not worth extreme stressing. 😁

Petsch
Petsch
in reply to Irishgal12

I felt the same way at first. I was a mess. Actually went to a therapist who really helped me. It’s now been 3 years and I don’t even think about it anymore. Go talk to someone and get on with your life. It’s very precious and actually we are watches so carefully that is anything suspicious shows up we will be taken care of immediately

I was told more or less normal, with treatment if needed. I spoke to a lady at the clinic in her 80’s who had been on hydroxy for nearly 30 years without problems!

We have been asked to provide a prognosis report for a policy we have and the consultant said you can't give a prognosis as there is so many variables. With monitoring & treatment where needed then a MPN patient should have a long life. So as you are now in the system, if you are diagnosed with an MPN you are in safe hands. Therefore if you do get the diagnosisis you fear then please see the silver lining that it's been detected. It's a horrid shock to start with, & it's completely understandable but if it's not been detected it's more risky as are most health conditions. Its better to know and react than be in blissful ignorance. As hard as it is please try not to worry x

Hi Irishgal12,

On first diagnosis I was told by my haematologist “I give you 30

Years, if the condition doesn’t get you the medication will.” In my opinion he was a dinosaur and over due retirement.

However his comments facilitated my anxiety and denial of my condition.

To cut a long story short, after seeing a health phycologist and changing to a hospital with well informed haematologists I now believe in normal life expectancy, and that MPN’s can be life limiting but not life threatening.

I was 30 at diagnosis, 20 years ago, and have no reason to believe I only have 10years left, the advances in medicine and clinical trials is inspiring, and who knows what will be discovered in the future.

Good luck and Have Fun,

Ourlife

Life expectancy with ET is absolutely normal so long as other risks like thrombosis are controlled and you’re one of the 90%+ whose ET doesn’t progress to anything more serious.

There are lots of scary stories out there as ET was traditionally diagnosed later in life and if you were in your 60s already then 33 years would be a good result..!

When I was diagnosed 16 years ago I found studies showing average 15 year survival but on closer inspection those were based on historic diagnoses in people in their 70s and 80s..!

I was diagnosed at 47, so 33 years would get me to 80 - if that’s all I manage I’ll be disappointed but am confident it’s something else that will get me, not ET..!

Hi I was diagnosed at 35, I am 68 now and still alive and kicking and been on Hydroxy for the last 20 and aspirin for the last 20 years so I don’t think you need to worry to much, just enjoy life 👍

I too am sorry you are getting anxious over your prognosis. I was told many years ago that most people die with ET not from it. That said prognoses that you have read are by their very nature historical. There has never before been such extensive research into MPN disease and treatment. Who knows what this research will bring? Understanding of MPNs is progressing all the time and therefore treatments will progress too. Don’t worry about the past. Have faith in the future and put your ET on the back burner where it belongs! As someone else has said Dr Google can be unnecessarily scary. Very best wishes, Jan x

Hi Irishgal, I don’t come on the site very often but felt I needed to tell you that ET is very treatable and if you get a diagnosis you will be in good hands with medication to deal with it. I am now 74 and was diagnosed 10 years ago and at that time the diagnosis wasn’t good but there have been so many good things come out of research and trials that I am confident that I’ll get a birthday card from the Queen on my 100 years! It is scary at first but your confidence will grow and you will enjoy your life. I wish you all the very best and hang in there xx

Thank you

Manouche
Manouche
in reply to ballycool

I’m quite sure you’ll make it to 100, but you might receive a card from the King, not the Queen :-)

I'm have simptom from my 28, dx at 33, ET for 27 and progress in PV before 2 years I'm now 62, with MPN over30 years, 20 only on aspirin, and 1 year on venosection , and now on Pegasy 45 mcg every 2 weaks . Enjoy your life , best wishes!

I was diagnosed first in 1986 age 42 and probably had ET for a while now 75 . once bllod under control the life expectancy should be normal unless we all get Tumped.

Most people with ET live a near-normal lifespan. There are different risk groups within the spectrum of people with ET and where you fall within those groups depends on things like age, co-occurring medical conditions, what symptoms your ET is causing, which genetic mutation is causing the ET (JAK2, MPL, CALR)and the presence of complicating genetic mutations (e.g. TP53, ASXL1, etc). If you are JAK2 positive, then the mutant allele burden also has a bearing on prognosis.

I was in my early 30's when diagnosed with ET. That was over 30 years ago. My ET progressed to PV about 6 years ago. Still alive and kicking at age 64! I am fortunate in that my form of the MPN is relatively indolent. I have never had a single incident of thrombosis. In fact, I am a bit more prone to hemorrhage. I have had more trouble with the other effects of the JAK2 mutation. The increased load of inflammatory cytokines has been more bothersome (Note: osteoarthritis, planters fasciitis, eczema, chronic insomnia, GERD). What many of us experience is that the MPN has more impact on quality of life than its length, however, much of this can be controlled and dealt with.

Please know that like many, I have had a long rich life despite the MPN. Perhaps the PV will shorten my lifespan somewhat, but I plan to live my life to the fullest, enjoy each and every day, and not worry about my eventual demise. Living a high quality life is much more important than its length in my experience. So - try not to worry about lifespan - focus on living a rich full life in which you manage the challenges the MPN may present.

All the best.

Blood cancer can now be managed so as long as your condition remains stable you can live a normal life expectancy.

Medication has come a long way along with research.

My husband had PV he's now progressed to MF.

His bloods are stable since starting ruxolitanib.

He works full time he was diagnosed at 41 he's now 47.

We still lead a normal life yeah MF makes my husband exhausted but he just goes to bed early.

He feels lucky that his blood cancer can be managed.

Tracey

In the past this has scared me too, but my understanding is that it is perfectly possible to have a nornal life expectancy. Obviously it can progress, but I believe it's best to focus on staying healthy now.

Yes and I read progression so rare

What can it progress to

Stop! You haven’t been diagnosed so stop thinking yourself ill. The stress you are putting yourself under is doing far more harm than any symptoms you are experiencing. I have read your post and the wonderful support and answers you have been given. You seem to ignore all the reassurances but jump immediately on any possible bad reference.

You need to see your GP as a matter of urgency for your stress/depression. You are diagnosing yourself which can be very dangerous for your mental health.

I think you must be torturing your family.

This response is so unlike me, I always offer my utmost support to anyone who has been diagnosed with an MPN but, love, you are doing my head in. It’s almost like you want to be diagnosed.

GO TO YOUR DOCTOR AND STOP THINKING YOURSELF ILL!

The people here who have been diagnosed can not reassure you or help you because you don’t even know if you have an MPN.

Sorry to my MPN family if I sound harsh but this lady needs to stop putting herself at risk through stress, go see her GP, and then IF diagnosed come back so we can guide her through the “process” and offer support. Right now we don’t know if we are putting her at risk by adding to her anxiety. Sorry.

I appreciate your honest reply and it's made me stop and think. I dont want to be diagnosed that's my fear. But everything u said your right

As others have said, you don't have a diagnosis yet and perhaps not knowing causes more anxiety. IF it turns out you have ET, your haematologist will talk it through with you and be able to reassure you. But honestly, of all the things that can go wrong with our bodies, ET is one of the least threatening. You get used to medication if you need it and you get on with your life. Please try not to Google - it just leads to more anxiety. Keep us all up to date as we are all here to support on another.

I didn't want to be so harsh love but I was so concerned about the anxiety you were causing yourself. Dr Google is the worst doctor. Get your answers from your Haematologist and get ready to enjoy life but with medication to take. An MPN is not a death sentence my lovely, it's just a hiccup along life's highway xxx

My gp is aware of the impact on my mental health and doesn't seem supportive

At the hospital where I live there is a MacMillan Cancer Centre. I got tremendous support from them when I was first diagnosed. If you don't have one in your local hospital look them up online and ask their advice. There again, you will need to be diagnosed first or they probably won't know what to support you with.

Like u said not diagnosed and hopefully wont be

Yes,dear,so stop the fretting until you are. If you don't have an MPN look at all these weeks of stress you've wasted when you could simply BE HAPPY. Not sure if someone else suggested this with all the other advice but have you considered chatting to a counsellor/psychotherapist? You are clearly anxious and, sorry to say this but, you might "find" another illness to fret about once you AREN'T diagnosed with ET/PV/MF....

Be well and for you and your family's sakes try to enjoy life and shed the habit of worrying. Stress IS a killer!

Karol

Thank you

👍🏻 Only trying to reach out to someone who's definitely in need...Karol

I appreciate

I get all my bloods done tomorrow

Tico
Tico
in reply to Irishgal12

Hi Irishgal12,I have been off the forum for a bit and was shocked reading your post and previous posts and then realising you had not yet been diagnosed. I agree with jillydabrat and think you need the help of your Gp with the stress and fear you are instilling in yourself which will do more harm than good! I hope you get good news when you next see you Haemo but if you are diagnosed with an Mpn your in the right place here and you will be managed by an Haemotologist and clinical nurse specialist. Ata,tina.🤗

My hematologist said there is no shortening of life span as long as you are under a doctor’s supervision. He sees me once a year and only has me on baby aspirin. May need to do more like phlebotomy tho 😕

Irishgal12
Irishgal12
in reply to Mpncoda

Good what is your platelet count

Thats rubbish. Keep your body as healthy as you can and there wont be any difference. Healthy eating. Zero junk food. Keep active. Healthy weight, healthy cholesterol, blood pressure, etc. Make it your mission. All this things are withing your control.

I’ve been diagnosed since 1994, but it was suspected up to 5 years earlier. So I’ve had it for 32 years. I don’t need meds and I had another BMB to check for progression but was fine. My platelets are around 500-650.

I understand your anxiety as my new Haemo was convinced I had progressed to MF and I put off my BMB for 6 months. However if you do get an ET diagnosis then you should be looking forward to a normal life span.

I’m 36 and read that also.,, it sounds terrifying bc I’m not ready to be dead by 69.. i plan to live well into my 80s and beyond 😁 I think it’s hard to get stats on people younger than 60 bc it’s primarily been found in people over 60 until recently. I see it in a lot of younger people now.

Aneliv9
Aneliv9
in reply to Mamab83

33 years of lifespan that you read, is in fact a MEDIAN number. This means that 50% of people will have less than 33 years, and 50% will have more than 33 years. So 33 years is not the top

Hi Irishman,

I have read many life expectancy averages. There are several points to consider.

In my hospital in Vienna, it is now 22 years from the day of diagnosis. BUT don’t forget, that most people get this in their mid sixties and older, therefore, they bring the average down considerably.

Some are diagnosed within 2 years of start of illness and some (like me) at the 7 year point or older. Mine started at 44-45.

There are soooo many ways to enhance your good health through changes in diet and lifestyle that will (I am convinced) lengthen you good health years and years overall considerably. I am healthier and better off today than I was 15 years ago because of my really looking after my health and banning all chemicals, removing metals, pesticides, negative people, harmful foods, etc.

Educate yourself and get empowered. You will live a stronger, happier and fuller life as I do, after my diagnosis than before.

Hope to have helped. 🙂 Anag

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