life expectancy for under 60’s

[Carthe]

healthunlocked.com/fight-mp...

The life expectancy is a bit shocking on this article - I’m confused - and a lot younger than 60? I’d take 20 years at 60? But not at 45!!

[kevmince]

Dont panic ! the median survival rate is the middle number of years survived after diagnosis , half would survive less than 18 and half above, but the vast majority of people diagnosed with ET will be over 60 and will die of other things because of their age , not ET .

so the point i'm trying to make is survival rates are skewed because most ET patients are into older age at diagnosis. When i was diagnosis in my twenties , haematologists looked at me like a unicorn , and Ihad gps tell me i couldnt possibly have ET .As a younger patient those stats are not necessarily helpful, because they dont represent us.

Anyhow , i'm at 25 plus years since diagnosis and probably 35 plus of high platelets and im still here

[Otterfield in reply to kevmince]

I was going to say something similar. I would also point out that elsewhere in the article it clearly says that ET patients have a normal lifespan, as long as the disease is well managed.

But I have noticed, Carthe, that your main issue seems to be anxiety. You have said that you have only slightly raised platelets and no symptoms. If you have ET, it will be easily managed and you can look forward to a long life.

Jennie

[Carthe in reply to Otterfield]

oh Jennie when o see you name pop up I smile.

I love your outlook and kindness! I am surrounded by a family of ‘get on with it’ ‘ we don’t do I’ll’ that and 2 demanding young boys - not their fault they are thriving but I’m tired and worried.

I’m going to speak to go in the morning to get some sleeping tablets as I just need to rest I think!

My main concern is if tests are negative so they start testing for ‘other’ things? Or would you expect to see that on the bloods? I also do not want a bmb if it is negative to be honest…. Xx

[Otterfield]

That's a lovely thing to say - now you have made me smile too!

I think you are right to see your GP, perhaps he could also refer you for some counselling (although I think there are waiting lists) or even some anti anxiety medication - there are meds that are not addictive, like Sertraline.

Very best wishes, Jennie

[monarch5000]

It's true that compared to older patients, younger MPN patients have an even higher excess mortality due to disease progression: youtu.be/s9euOVQGhks(Not working as expected?)

[Carthe]

who is this guy? What’s the bigger article about? Thanks

[monarch5000 in reply to Carthe]

Gaith Abu-Zeniah sciencedirect.com/science/a...

[ainslie]

it’s also worth bearing in mind these numbers are based on historical data , I think the stats are based on Mayo data from the last 50 years! . Treatments are very different now and will be even better in the future. As someone else mentioned you’re more likely to die of something else at some point and not your MPN.

[KLCTJC]

I know how you feel. I was diagnosed at 38 with PV. A year after having my daughter. I have had a rough ride over the last 3 years, but my MD Anderson doctor told me not to look at any of those studies. He reassured me several times I can live a normal life. Now I have since been diagnosed with MS. So, it has been rough, but I am on Besremi which has lowered my anxiety because I feel like I am doing something. I just pray every day I live long enough to see my daughter grow up. But the doctors continue to reassure me. So I keep going and keep living my life the best I can. But I know the feeling! The people on this site are the best resource and they can reassure you too. They are working on new treatments and medicine is only getting better!

[hunter5582]

Interpreting the statistics involved in life expectancy with ET requires a deeper dive than just looking at the median survival rate. That statistic does not say anything at all about your individual prognosis. There are many other factors to be considered in determining your individual prognosis, such as non-driver mutations and co-occurring medical conditions. Looking at broad statistical projections only predict what will happen to entire populations, not to any one person. Do also note that the long term survival statistics include subjects who did not have access to the treatments that we now have that can improve survival.

Most people with ET will live a normal lifespan. You are more likely to die with ET than from it. Treatment options are expanding and improving. People with ET do need to properly manage the condition, but can plan to live a good life. I certainly have. I was diagnosed with ET 30 years ago. It progressed to PV 9 years ago. Now age 67, I have lived and am living a good life. I initiated treatment with the IFNs (Pegasys/Besremi) and am responding well. My plan is to live a normal lifespan and enjoy life to its fullest.

All the best.

[saltmarsh]

Keep the faith. You will learn to live with it. There are many new approaches and, while a bit overwhelming for a mom of young boys, it is going to be ok. The understanding of this ailment has greatly increased just over the last 20 years. So relax, enjoy this stage of your life with the boys, and look forward to a full life.

[Mostew]

I don't remember if I've suggested th Insight Timer app to you? If not have a look . Lots of relaxing stuff on there . Maybe you can find something you like .

Not easy to take time for yourself with children but you do need to , for their sake and YOURS .