does PV change life expectancy?

[souplover]

I'm sorry to bring up this topic, but I never seem to get a straight answer from the hematologist. The question is the extent to which Polycythemia is likely to change life expectancy. I get it, it depends on lots of factors, including age and other conditions. But still... I might live a little differently if I thought it would shorten my life. For example, I might make a different decision about when to stop working... I'm wondering whether others have a better sense than I do on this.

[Manouche]

Yes statistically it does, but you are not a statistic. You might even live longer than the statistics considering you’ve now adopted a healthier lifestyle !

[souplover in reply to Manouche]

Thanks, Manouche! I'm 72 - and have lived a fairly healthy lifestyle all along in terms of diet and exercise. Online I'm seeing that 14 years is average for life expectancy. Does that 14 years seem about right on average for people over 60? Understood that it will vary with individuals, but I'm just trying to get a better sense as I make decisions about how long to work, especially.

[Manouche in reply to souplover]

One often get confused between the notion of « average » versus « median » life expectancy. Let’s say the median life expectancy is 14 years (10.9–27.8 years). In other words 50% of PV patients will die within the first 14 years ( 10.9–27.8 years on some cohorts) and the other half will die after 14 years ( or after 10 to 27.8 years). So I suppose you can reasonably expect to survive up to the age of 99.8.

[Cja1956]

There is so much research going on now with new medications and treatments coming out all the time, that the chances of your living a long life are very good, in my opinion.

[soisew]

Hi there everyone. I have had pv since my early 40s. I am now 78. I still grow a vegetable garden, share some, can some. I work some rest some. My friend nancy (65) brings her dog over and we go for an 8 block walk with our dogs. Mine is a 20 year old Chihuahua so it is a slow walk. Housework is another thing, just a necessary evil in life. I do only what I can get by with. Take care of yourself

[Canbrit in reply to soisew]

Wow! Good for you! Are you on any meds for your PV?

[soisew in reply to Canbrit]

I take 2 500mg of hydrea on monday wednesday and friday and 1 daily the other days.

[Canbrit in reply to soisew]

When did you start taking those meds?

[catkinspolymer]

Hi , Now very nearly 76 have had ET/ PCV for 30 years did give up full time work at 55 and toured Europe with my caravan . Still maintain my old house 16c and large garden ans support the village Btitain in Bloom Group.

town crier

[samiris]

Now doctors deny to answer many important questions asked by patients, like if PV is a kind of cancer or life expectancy. They pick a pill and renew it monthly with checking the test results. They even don't discuss diet, exercise, and lifestyle which are critical factors in well-being and health of patient, might be not less than the drug. This is a kind of self protection, making their job easy and more secure. This behavior is not good. In the past (1960s, 70s) I recall doctors were discussing many subjects (diet, etc.) with patient as well as with their families, but now doctors totally ignore family members while the patient might be not fully functional, in need of help from family.

Re life expectancy, because there are many factors involved (general health, lifestyle, environment, diet, stress, etc.) it is hard to determine it just based on observation on few people with PV. But the experience of patients with PV can shed some light on the issue, like that people with PV can have a long life as normal. Some people may have shorter life due to stress than PV.

[souplover]

Thanks, everyone! It sounds like it can shorten life expectancy some, but there are too many factors to make a clear statement. It depends on lifestyle, environment, other illnesses. And there is a possibility, as Manouche says, of living a long time with it.

[hunter5582]

As others have already indicated, it is important to not confuse statistical projections with your individual prognosis. They are not the same. statistically, people with PV can expect to live a near-normal lifespan (76.1 years for an American male). There are risk bands in the better research that predict mortality for large groups of people based on known risk factors. This has little to do with what will happen to any one of us individually. There is no way to know whether you will fall one-two-three standard deviations out from the mean.

According to the statistics (and the MPN longevity calculator) I would expect to live to age 74 (currently 65 years old). I do not look at it this way. There is no MPN timer ticking away in my body waiting to go off. I have no plans to die on a schedule. My focus is on living a high-quality life for however long that is possible. All treatment is geared toward this goal. I do not fear death, so I do not focus on it. As a person of faith, I know something better awaits me; however, I am not in any hurry to exit this stage of my existence. Plenty left to do and enjoy in this life and I plan to stick around for as long as I have a decent quality of life. Treatment options are improving, both for maintaining quality of life and longevity. Perhaps there will be something curative in our lifetime.

I favor embracing life for as long as that is possible. While I am aware that PV may shorten my lifespan, I simply do not choose to focus on that. I focus on doing what I can to live the life I want to live. If continuing to work is what is what you want to do, then do it. If retiring is what you want to do to enjoy the retirement lifestyle, then do that. Or work part-time and enjoy the best of both worlds (that is what I do).

You may find that trying to get doctors to talk about longevity is difficult. Some are uncomfortable with the topic. Some also worry about creating a self-fulfilling prophecy. Often they really do not know the answer to the question any better than you do. Not many will make predictions unless you are end-stage with a disease. I think it may be more helpful to sort this out with friends who understand what it is that you are coming to grips with. Perhaps a counselor if things are really troubling you.

I believe the issue ultimately is more about how you will choose to live your life than how long it will be. Choose to do everything you can to create a high quality life, which will likely also extend it and let go of the things you cannot control. It is a much happier way to live.

All the best you you my friend.

[ja66ck in reply to hunter5582]

I needed to read this. This was so helpful. Thank you!

[BeHealthy1986 in reply to hunter5582]

There is so much I can learn from you Steve!

[hunter5582 in reply to BeHealthy1986]

Thanks, but do note I learned most lessons the hard way. I often learn from all the mistakes I make. Some lessons were learned the really hard way. I mostly know how much I still need to learn.

[souplover]

Thank you so much, Hunter! This is so well said. What you're basically saying is, "Don't live as a patient. Go out and live your life as fully as you can!"

I particularly like your last paragraph, which is wisdom for anyone:

I believe the issue ultimately is more about how you will choose to live your life than how long it will be. Choose to do everything you can to create a high quality life, which will likely also extend it and let go of the things you cannot control. It is a much happier way to live.

[Buggerbear]

Thank you all for your comments and words of wisdom!! Worrying about your life expectancy only creates more stress, and stress can make you very sick. Everyone's comments and concern helps me cope with the many challenges of PV and ET!!

[BloodZero]

I knew two twins that had PV. One died in their late 30s and the other is still living. The difference i seen in them both was how proactive one was with eating healthy. And looking after herself in general.

What i took away from that was that PV in itself may not shorten life expectancy drastically but ones response to it. Eating healthy, get enough sleep, go for walks etc.

[souplover]

That's an interesting story, a natural experiment.

[KevinJH]

When first diagnosed with PV seven years ago, a friend - whom I never even knew had the same - told me it's a bit like having the Sword of Damocles hanging over you. They had therefore adopted the philosophy of living life to the full as normally as possible, eating and drinking in sensible moderation and only giving thought to PV on the day of their blood test. Not suitable for all I know but this mantra has served me well up to now which I'm pretty sure has eased the stress levels.

Also, a haemo happened to say to me a while back that in the greater scheme of things, one is more likely to die with it than of it, so try not to stress too much about it (again, maybe not so easy for some......).

[souplover]

Thanks, good sound wisdom for all of us!