Eerr... I'm feeling a little uneasy writing this post... I'm just going to say it since it's been a nagging voice in my head for years now. I'm sure lots of you have had the same thought.
Here we go...
I live in the UK, Scotland to be more specific though I am English born and bred.
When I was first diagnosed with ET JAK2+ at 43 years old in early 2016. It was a bombshell, It came after a blood test which I requested after feeling unwell for months. My father had recently died after a stroke.
Now I'm getting to the nitty gritty...
I've heard of many people of all ages getting diagnosed with blood cancer. But all the statistics I've seen say that mpn patients can live a normal lifespan... most of which are diagnosed after the age of 60 years.
My ET quickly progressed to PV in 2017...
What is a normal lifespan??
No disrespect to anyone, but if I was told that I had blood cancer aged 60+ I'd take it on the chin. We're all going to get something, nobody gets out alive from this world.
Let's say 20 years ( according to statistics ) is a reasonable time to survive with blood cancer. Nothing to worry about, you'll be in you're 80s by then right?
Guess what... We're not all old, we haven't had the time that you had. We haven't seen our children get married, we never met our grandchildren.
We were never told to isolate/sheild during the covid pandemic. (At least not in bonny Scotland).
When will this condition be taken seriously? People who need to work, who need to provide for their loved ones, who need to feel wanted and cared for, who will stand up and say ME TOO?
I FEEL LEFT BEHIND.
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RobPV
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I love this! I definitely don't want to live to 120, but 85 would be excellent. I'm 50 now and even with this dumb MPN and having days when I feel like I'd rather be dead (bone pain!) I'm ready to get my vaccine and go do all the things I want to do.
Hi,Rob. I understand your anxiety and concern for your future. I was 52 when I was diagnosed with ET Jak 2 in 2008. It has since progressed to MF. The good news is that there has been so much more research into treatments for mpns that you will benefit from. My kids are grown (age 30 and 33) now and even though they are not married yet, I have seen them grow into loving, productive, successful adults. You will find a lot of supportive and knowledgeable people on this site. Try to stay positive and as active as you can. You could have a long life ahead of you
Yes, my birthday was this month. I try not to think about life span. My hematologist told me in 2019 that I would probably need an SCT within 2-5 years and to get “all my ducks in a row”. It was very difficult news to hear. And, for a while, I would have good days and bad days, thinking about this. Now, I just try to make the best of each day. Everybody has something that they are dealing with and I try to focus on being there for others, so I don’t focus on myself. So, stay strong, stay positive, and informed. You will be okay.
ET and PV patients certainly can expect a normal lifespan. I was diagnosed with ET in 2001, aged 39, so I know what it's like to be diagnosed young. I'm now 59 and I'm still here. Even though I progressed to MF last year, I'm not about to drop anytime soon - treatment is excellent and many more options are being discovered. Being 60 or older does not mean that we take a frightening diagnosis "on the chin" - we get scared and upset just like anyone else. When you reach 60 (and you will, and way beyond) I'm sure you will understand that.
I echo that - I was diagnosed in 1985, the dark ages to have a MPN, with 2 children under 5. It was very scary especially as treatment was rather brutal then. With platelets over 1600 there was a lot of head shaking by the doctors. They hadn't seen anyone of my age before and now on this forum we hear of many even younger people being diagnosed.
Although I, also, am one of the rare ones to progress to MF ( always wonder if it was the early toxic treatment) with ruxolitinib for last 3 years I'm still here at 67 with a reasonable quality of life The speed of new treatments over the last few years is staggering and I'm sure will only get better.
What does your haematologist say? It is a lonely disease as often we look fine though feel unwell both physically and mentally.
I get what your saying and I understand your feelings. I'm 36 and when they say "normal life span" I wonder, if that's also valid for younger patients. I know it's terrifying for everyone to get diagnosed with a rare blood cancer, but 20 years left with 60 and 20 years left with 40 isn't the same. I really don't want to be disrespectful and I hope everyone gets me right, I do not intend to downplay this illness for older people.... but they can life their life out (with restrictions though, I know) and in my situation I consider this as a great gift.
I never wanted to have this kind of cancer, but if I would have the choice, I'd rather got this diagnosis 20 years later. I'm sure I wouldn't have felt better then, but I think "normal life span" would have been more probable for me then.
I mean, 80 years is considered a normal life expectancy, that means as a 40 year old you have to make it 40 years(!) with a rare cancer. This feeling, that I'll not see my kids grow up, never see them starting a family and I'll never see my grandkids provoked multiple breakdowns in the last couple of weeks.
I really hope for research and more treatment options, because this feels like the only hope left.
Where did this "twenty years" idea come from? With ET and PV, there is nothing to shorten your life if the disease is managed. I am twenty years on from diagnosis (at age 39) and am still alive! Even though I now have MF, a very experienced consultant told me that I can still expect to live for a long time. I think there is a mathematical misunderstanding here: if the AVERAGE survival time has been measured at 20 years in a study or two, that would be because the the majority of patients were at the older end, so would obviously live for a shorter time than younger patients, thus reducing the AVERAGE survival time. This average has no bearing WHATSOEVER on how long a younger patient could expect to live.
I think many researchers, doctors and patients are mixing 2 things up : Alive and living !!! You can be alive, but not have a life !!!
For us intellectuals there will most often be an escape into the booky realms (if you can see or hear), but for a person who think with his hands, (which is not less noble) a life he cannot live, must be a burden.
I've been on Pegasys for a good 8 years (born -54) and my body is already falling to bits (ET jak2 neg)-- and I know it is caused be the injections, cause it follows their " interval".
So-- I understand that many worry, esp. the young ones. There should be a lot of redundancy attached to the base treatment we get, such as special careful training, but also an open mind from the doctors---a willingness to listen and care about every patients trouble. Couse we are all different, not only of mind, age, situation, but also of "purse" and occupation.
I was replying specifically to the question about lifespan. Quality of life is a different question; that too can be perfectly fine with ET and PV, but for some there are more debilitating symptoms and extreme fatigue. I hope that the younger patients on here can take comfort from the fact that lifespan is likely to be normal with their MPNs and not be misled by poorly explained maths.Of course young people will be worried, as I was when I was diagnosed at 39. The average lifespan quoted then was 18 years (by Google, not by my more sensible doctor), and I also panicked and misunderstood, until I thought it through.
It is also possible (and likely) that young patients will enjoy a good quality of life for many years. The tragedy would be to spend that good long life believing otherwise. I know of a psychologist who said that she had seen far more lives ruined by fear than by cancer.
My husband felt exactly like you when he was diagnosed . He was so angry and don't get me wrong he can have low days when he thinks about things but in all honesty he went through two years of exhaustion he worried every day thinking if this is life I can't go on.Then he change to ruxolitanib it was a life changer for him hes got no symptoms at all now and is loads better mentally.
His consultant is certain in the future there will be a cure.
A lot of data etc on line is old news . We were told don't read about life expectancy as people have lived years with mpns and medication has come a long way so the future is very hopeful .
Hi RobPV, there are a lot of folk on this forum who have been diagnosed with an MPN and have young family and they have received loads of support here. I was 55 when I was first diagnosed and it wasn’t easy either. I was in the process of handling both parents dying (6 weeks apart) and the police force I was working for was changing to a National force which would mean both my husband and I were both lose our jobs. It’s never a good time to be diagnosed with a chronic disease.
Yes, it would have been harder if I still had my kids at home - I was lucky they were at university by then.
Stick with the forum so that lovely people can support you regardless of age, nationality, etc. Joining this forum was the action which helped me the most.
Hi Rob, yes I can say I've felt all those emotions at times. More so this year when I was fighting against the system to get a shielding letter.
As many have already said. Research is marching on. The care for MPN patients is far better now and the life expectancy, for most, is 'normal'. I'm 54 on Monday with a grandchild on the way.
I am fighting, behind the scenes, for Scotland to hear all their MPN patients.
Hi. I understand completely what you mean about the difference of being given 20 years to live at 60 vs 40. BUT....... if anyone told you you only have 20 years of life left you need to drop that doc & get a good MPN expert to oversee your treatment. Over the years I’ve read postings here from people who have lived 40-50 years already with no expectation of dying soon. Most folks die of something unrelated to their MPN & if diagnosed in your 50’s or 60’s it’s reasonable that you may die in 20 years from many different causes unrelated to your MPN. And now there are drugs shown to prevent progression for patients with ET & PV so take a few slow breaths & take it slowly. But always be sure to have a doc who actually specializes in MPNS. Take care. Katie
Hi. I am 49 with MF. I was diagnosed in October. I am on Jakafi and it has helped a lot with my bone pain and yet I have gained a lot of weight. I have fatigue as well but I do feel like it is helping me to deal with this cancer. My cancer is chronic and progressive and I am scared as hell a lot of the time. I’m also in the middle of a divorce, so I cry out of nowhere sometimes. The doctors here say I’m too low risk for a transplant so I will go to an MPN specialist soon. He may say the same. I feel confused sometimes and wonder why wouldn’t I get a transplant while I’m semi strong. This is a life changing disease but I’m going to fight like hell and keep on the positive side. I do believe attitude is everything! And support, and hugs, and puppies. Laughing helps too. I am grateful for this forum. It is the middle of the night and I can’t sleep so here I am. You are not alone.
Hi runnerbird, sorry to hear of your progression and your divorce also. Things always pile up together! If you haven’t yet seen an MPN specialist, I would not make up your mind about your condition as MPNs are rare and widely misunderstood by medics who are not experts in that field. Push for that appointment and keep in touch on this forum as many people with these conditions will help and support you.
I am sorry that you feel that your disease is not being taken seriously. Do you have the option of seeing a different doctor?
As one who is 61 and diagnosed Jan 2021 I know what you mean about taking it on the chin. When I was given the diagnosis and life span, I laughed and said so I am not going to be dying young then. I would not have had that reaction if I heard the same at 40.
But consider the following:
Statistics are accurate for large numbers, they don't tell you much when it comes to the individual. Statistics can't tell you where you will be on the bell curve of survival.
As you know, most people are diagnosed ET or PV after the age of 60. Since the 'average' lifespan of the general population is less than 80 in most first world countries (last I looked), it seems to me that the average lifespan of an ET patient receiving treatment after 60 is pretty much in line with the average life span of the population in general.
So how likely is it then that 20 years is accurate for those younger than 60? 20 years is the average future lifespan of any healthy 60 year old. My doctor said that if I had been diagnosed at the age of 59, my expected life span would be 35 (she even said the numbers were somewhat bogus, there simply isn't much data).
If ET and PV is rare enough in your age group, they may simply not know what the normal life span is for patients younger than 60.
But at least knowing what you have, you can be proactive in lessening the risk of a fatal blood clot by exercise and diet.
Medications to control the platelet levels are not without their own risk of course and more problematic the longer you take them. But hopefully you can find a reasonable balance between the disease and the medications.
Unfortunately, the life span is only part of dealing with ET/PV. The other is dealing with the fatigue and other issues that arise. I have had great luck with my meds, I hope the same for you.
I was 59 when diagnosed so I’m in a different situation but I totally understand your fears. I cried and cried even fours later when my platelets weren’t steady I cried. None of us know what our individual life span is prior to diagnosis. All I can say is tell yourself your glass is half full. That’s what I try to do.
What if You try and tell yourself ‘I had 43 years of a healthy life before diagnosis.’
My brother on law didn’t. He never learnt to ride a bike always had an awkward gait. Got diagnosed with MD when single and in his 30’s. Never married and had to be looked after by this parents beat all his life.
In a wheelchair a few years later. He lost his job because of it and died when he was in his early 50’s.
I have a friend who was after proving herself to be a gifted teacher was diagnosed with bio polar. She’s lost her job. They are my inspiration.
Hi Rob, I’ve had similar thoughts too, the literature and info really isn’t helpful, we’re constantly reminded that it’s an over 65’s condition and that we can live a normal life span, like you say that doesn’t factor in those of us who are diagnosed in our 30’s, ultimately there doesn’t seem to be the research into the life expectancy of younger people living with an MPN. As a cancer group we never seem to fit any where and definitely seem to be an add on!
Hi I was diagnosed at 47 after a major stroke. So it’s good you’re being treated prior to an incident. Here’s something to cheer you - my nan had ET and lived to 97. My mum has it and is 77 and going strong. She was diagnosed in her 50s. The reality seems to be some people get away with a ‘low level’ hit from ET but a few do progress to worse - My consultant thinks I’ve had it for decades before diagnosis so those diagnosed in their 60s probably had it for years therefore if you do the maths you can hope for a long life. Jx
I very much wonder the same Diagnosed last year am 33.
I really struggle i worry 😪
When I asked my specialist he said to expect normal life expectancy and that progress to other diagnosis is rare apparently some people never progress i cant help but think is he trying to reasurre me
The problem there is that a higher percentage of those with problems will seek out these forums than those of us who are luck enough to be symptom free ( so far, fingers crossed). The main reason for MPN patients dying younger would be if we were not diagnosed - so who knows how many strokes and heart attacks were and are caused by clotting in undiagnosed people? We ALL stand a better chance of a longer life because of our diagnosis than we did before it!
Life expectancy is improving dramatically. Our boffins are making massive strides in understanding MPNs and there are amazing and exciting therapeutics in the pipeline. MPNs have been under researched but no longer.
The landscape and prognosis is going to look very different in five years. I follow various MPN sites on Facebook, contributors post the latest world wide research pretty much on a daily basis. You will find it very reassuring.
My view is it’s all about buying time for this Cavalry to arrive eg adopt healthy life style, exercise and be positive.
Also, short term check out Pegasys/Ropeginterferon. This is gaining credibility as a short term fix for some patients.
I often think (fantasise?) how the appearance of Covid and technologies such as Crispr might result in medical advances that will help find the cure for MPNs. Or I’m just in denial, not able to face the fact that I will need to put up with this for the rest of my life?
Can you please share the links to Facebook and other resources you're following? It might help to stay positive.
Your post cheered me up today and I just wanted to thank you. A BMB recently identified I have PV not ET which I'd prepared myself for but it also identified I have lymphoma which I had not prepared myself for. My hemotologist is really nice and trys to reassure me that both conditions are manageable and I do try my hardest to stay positive but sometimes it's hard. Reading your post cheered me up as it's gives hope that a cure for mpns may not be too far away so thank you I'll keep focusing on that cavalry arriving. 🤞
The belief in save lives at any cost breaks the Hippocratic Oath ,at times .
Of course young people are worried when diagnosed. Medics arnt trained to really listen . Some have a natural ability . So called alternative practitioners know the importance of a listening ear.
I can fully relate to what your saying I have mylefibrosis jak2+ I was diagnosed at 24 years old not long after giving birth to my second child i got portal vein thrombosis after my c section my lungs and body filled with blood clots due to mylefibrosis it was diagnosed after tests I have lived with it for 11 years and iam 35 now I can apprieate your thoughts because I have had the same many times every time I have had treatment iam always the youngest there I think we just have make the best of it my family say quality not quantity but it doesn’t make it any better I wish they did more to cure us or at least try to
That's very young to have to go through an MF diagnosis. How horrible for you. Has your consultant talked to you about a stem cell transplant? Obviously it's not without risk but MF can be hard to live with.
Iam under donal mclornan at st guys and Thomas and iam hoping to have a stem cell transplant but I have some complications and it’s going be very risky so they want to wait incase the worst happens to give me more time with my boys but jafiki is no longer working for me and I will be going for a face to face soon as they have asked see me as soon as it’s safe enough for me travel
I'm so sorry, that's a truly horrible situation to be in. I really hope things can be sorted for you. New drugs and treatments are always on the horizon so here's hoping for you.
Yes it sounds as if you need an appt to discuss your worries. This forum will help keep you cheerful, so many lovely people sharing their health concerns. Keep looking forward and feel really good about yourself. We are great survivors and not given to abandoning hope.Thank you so much for voicing your concerns, I have looked up life expectancy and had awful days wondering how much time I will have. Then I read about people who have lived a wonderful long life. It all seems very individual. Enjoy each day and I think plan to live a long life. This gentle optimism will help reduce stress and give you an energy to help others.
Hi Rob. When we are all trying to be positive on this site, it is timely to hear your heartfelt and reasonable fears and to have that acknowledged. It's a bombshell for all of us to hear the diagnosis, but it must be especially hard when you are young. Other posts here have well expressed that these days, normal life span isn't considered to be 20 years for MPNs. Remember that the Jak2 gene as an MPN driver mutation was only discovered in 2005, and the WHO re-classification from 'disease' to a 'neoplasm' (a form of cancer) was only in 2008. Things have really changed since then; there's a lot of new science. There'll be good days and bad days, and I hope you can learn as much as you can about your condition and proactively manage your treatment and your life. What you've expressed is real and I feel for you. All the best.
Hi Rob, you poor chap. I wouldn’t worry too much if I were you. The youngest patient I’ve met is 21 and the oldest 82, and the 82 year old was still kayaking and hiking!My mother’s 99 and I sure as hell don’t want to live as long as that! At your age I’m quite sure you want to live forever. At 67 however, 80 ish will do me fine.
I’m not staying if I can’t do everything I want to.
A normal lifespan is a normal lifespan - I would say between 78 and 85? Who knows. Could be run over by a bus before then 😂 Dear old Captain Tom was 100 but who wants to creak along like that? Not me, that’s for sure, and he was a exception.
You’ll certainly not pop your clogs early. Think of this like diabetes, treatable but not curable, and don’t stress.
Normal life span for someone diagnosed at 60 might mean 20 years with the disease (so hitting 80). But it is a rare condition, esp. in younger people, say diagnosed at 40, where in order to get to the same life span you'd have to live with the disease 40 years. I'm not sure there is enough data to even say, but it can't be the same, surely? (Not trying to be negative - but it is different when diagnosed at 4o / 50).
Lifespan really can be normal for younger patients. As long as ET/PV are managed well, there is no reason for life to be shortened. Although they have been reclassified as cancers, they are chronic cancers and not life threatening in themselves, as long as medication is used to protect you from blood clots. Even if you are in the minority of unlucky ones like me, who progresses to MF, you still have a good chance of a long life.
I understand they are not life threatening in themselves. However, from what I've read the chances of them progressing to something that is increases greatly with time. Hence the worry for younger people.
Sadly, the chance of getting any serious illness increases with age, but to my knowledge, progression to MF only happens to a minority (which is why, in my bleaker moments, I feel so frustrated that it has happened to me). Progression to leukaemia is even more rare - I discussed it with a very experienced haematologist many years ago and he reassured me that it hardly ever happens with ET or PV. Fear is not unique to any age group - you should have seen the state I was in when I was told last year that I had MF. And in all honesty I'm certainly not free of fear now. But it's important to put risk in context and and to get some understanding of the limitations of over simplified statistics. It would be a tragedy for lives to be ruined by fear when the vast majority of MPN patients can live to a ripe old age.
So sorry to hear you have progressed to MF I totally agree we need to live our best lives and not be shackled by the 'what-ifs'. However, I think there is a reluctance to discuss / look at how those progression statistics change over time (+5 years, 10 year 20 years and beyond), as for most of those diagnosed two decades would be full life expectancy anyway. If others are anything like me - it is the progression over years rather than the management of PV that keeps me up at night. Personally, I don't consider 10% progression after 10 years to be 'rare', and it gets worse over the decades (I read somewhere 25% after 20 years, but I can't find the reference atm). That is why younger people feel lost with it all - or at leat that's how I feel. It seems that living with the disease for multi-decades is very different to managing the disease for only a couple. EDIT: Please do not think I am belittling or playing down the impact of those diagnosed at 60+ - I absolutely am not. I'm just saying that the challenges, specifically the chances of progression, do not seem to be the same. Here is just one reference - I shall see if I can dig the others out. media.leukaemiacare.org.uk/...
I didn't think you were belittling the impact on those diagnosed at 60+ 🙂 That's not me though - I was 39 when I was diagnosed (now 59). At the time, I had to get over the shock and then I set out to find out as much as a lay person could about ET. What I learned was reassuring and I was lucky to have a very knowledgeable and informative haematology team. I decided that I would not be defined by my illness and I was confident of a long life if I took care of myself. I always knew that progression was a possibility but I was determined not to spend my life expecting it. When it happened I was devastated but so pleased that fear had not ruined my ET years. Even MF is not the end of the world, as I have discovered. It's much harder, symptom wise, and I'm not quite over the shock/anger phase yet, but still I certainly don't want it to define me.
Well, I was 74 when I was diagnosed and I certainly didn't "take it on the chin". Apart from fibromyalgia and OA, I considered myself a healthy person and I'd never heard of MPN or MDS which I was also diagnosed with. To learn that I had only ten more years to get my affairs in order, when the older you get the faster time flies, was devastating.
However, my consultant did say that the prognosis is based on a median of people who are diagnosed (and most of them are over 60) and I have come to accept that the consultant had no idea of how "alive" I felt and I don't believe I am going to die until I've had enough of this life.
I am low risk but my bloods continue to have the same trends and I just remind myself that if I hadn't gone to the GP with a heartbeat that sounded like a marching army and keeping me awake at night, I would never have received the diagnosis. Except that I wouldn't have been put on aspirin and might at some point have had a stroke. Who knows? Fear can do more harm than the condition we have. Hopefully, when you've got used to the idea of having this thing, you will start to enjoy life again, because worrying about it isn't going to help.
As other members have said, one doesn't have to be 60+ to experience anxiety from the uncertainty these MPN's can cause. I was diagnosed at 56 with PV. At that age I felt like I was in the best years of my life, so hearing a cancer diagnosis was a real blow. I sat with my feelings about it for several days and then realized that no human being knows with certainty when they will die. We do not have firm expiration dates assigned when we are born. At that moment I decided I would live with this chronic disease one day at a time. I have to approach this the way most breast cancer patients approach life these days. Thanks to good treatments, many cancers are now considered chronic diseases to be managed and treated vs a death sentence. Can there be progressions or transformations with our cancers? Yes. But other cancer patients deal with recurrences and remissions. I gently wish you the perspective that has helped me so much- to live one day at a time with your MPN. I hope to live to be 106. I do what I can to promote that possibility. Attitude and perspective are key.
I learned that I have PV in my early 40s. I remember the same symptoms from my teens. My Doctor said it was very possible I had it then. I will be 79 my next birthday. My biggest problems is my back. Degenerative scoleosis and aurtherites (never could spell). I still make my little garden, do some canning and a lot of resting. I take my medicine and walk my dog 3/4 of a mile almost every day. We rest about half way. Housework is at the bottom of my list sometimes it even falls off. I take care of ME first then whatever. I hope you can do the same.
I think, a "normal" life expectancy is a life span equal to that of the general population in the same age group. An average life span (from diagnosis) on the other hand, takes into account all patients irrespectivelly of their age.
These are rare diseases, so samples are small to allow conclusions. Scientists also tend to disagree on anything from symptoms to therapies. Some experts say that even if certain mutations play a role, individual genetic profiles/random mutations define presentation and progression.
So you have something that probably affects every one differently, can present with anything from no symptoms to dozens of symptoms and doctors will not always agree which are these symptoms, we have no universally accepted and safe cure, disease can progress (or not). Then you hear of people who live fine for 30 years or more with them, or others who live miserable and short lives.
My conclusion (and I am new to all that and no expert by any means) is that we cannot say anything with certainty. For me this is the worst part. It can fill my head with fear and dispair on a bad day or seem not "a big deal" on a good one. It is my russian roulette. I know there's a bullet in there somewhere but where exactly, I am not sure.
As my diagnosis is fairly recent, my bad days are more than the good ones for now, so I know how you feel (I am 49). I can simply hope that will change...
Your post resonated with me. Today I feel great. I'm super positive and not that worried about my PV. But the next bad day will be a different story. It is hard for me not to feel low when I'm horribly fatigued and having other symptoms.
It isn't really lifespan that concerns me, but quality of life. I'm considered low-risk so was told to take an aspirin and go about my life. I'm very much looking forward to receiving my vaccine and getting to see my hematologist in person to discuss these issues.
True. Knowing that you have a "disorder" you may even associate irrelevant symptoms with it. As I often say, there was a time when a headache was a headache. You'd take a painkiller and move on. You felt a little dizzy and would get over it with a quick nap. Now I am thinking clots and strokes and whether this is how my life is going to be from now on.
It could be something simple, not related to the MPN but you just know you can never be the person you were before. At least for someone like me who saw every day as part of a bigger "project" to achieve something, it is (so far) impossible to live my life day by day and focus on the positive things in my life, knowing I might not be able to enjoy them.
Low risk and on aspirin as well so I was also told to focus on reducing stress and forget about . I suppose anyone who could do that, would not join an MPN forum to be reminded of his condition or have quarterly medical checks and appointments.
Your diagnosis is very recent. I remember those days very well even though it was twenty years ago. I was horrified and miserable but I got used to my new status eventually and most definitely went back to being the person I was before. I had a really good life, just being a little more tired than other people and dealing with minor side effects from medication. Some people obviously do have more symptoms but ET doesn't necessarily change one's life that much. Now I have MF and I'm so glad that my ET years were not ruined by fear. I've had to adjust to my own new normal now, but even MF doesn't have to ruin one's life. So many new treatments are appearing and the future can be bright, especially for young people who will be around to benefit from new research in the future.
The difficulty with this is that every individual is different and progression on the condition unpredictable and specific treatments varied. It makes it incredibly difficult to predict a life span and the notion of life span is problematic anyway. I could be run down by a bus tomorrow - We none of us know. What is different is that you know that you have a condition that may affect how long you keep going. As others have said you can do things to help yourself like exercise, eat healthy, think positively. I don’t think the age of diagnosis is particularly relevant as anyone at any age will feel the same kinds of emotions. None of us will be wanting to give up yet and we all have things yet to offer the world. It is easy when worried and coming to terms with this condition to see others as luckier somehow, or less deserving etc. The most helpful way to think is to realise that each of us is valuable and that none of us wants to leave this earth just yet. But the human condition is about being uncertain about what time we have. Being diagnosed just brings that to the fore. And as I say - no one can accurately predict how long this gives us as there are so many variables to take into account. Give yourself time to come to terms with it and try to be kind to yourself. those of us here enjoy life albeit with set backs and down days. The point is that this is life.
Hi Rob, I was 31 when I was diagnosed and was absolutely devastated when I read that average life expectancy was 9-30yrs, fortunately lots of research and groups like this have made me realised that stats are just that and can show many things. I know that’s not very helpful but I would like to hope that our conditions can be well managed now and we should be able to enjoy life to the full. I find it interesting that you aren’t on the shielding list, I am also in Scotland and I am on it. It seems to be a bit hit and miss across the UK.
I hope you manage to get some answers and peace of mind about your future.
Hi a was diagnosed last year end of march the same date has the covid19 just started so a was abit like all over the place at that time I've had ET jak2 positive since 2014 which I only found out last year only on 75mg aspirin eating healthy when a can, walking bit of excrises long has we are manger with treatments symptoms if any checks up then we are fine but has I say am only on 75mg aspirin been on a year now but I was on nothing before hand since I've had this year 2014 great people on here a know alot better by chatting to nice guys on here has help me aswell but am not worrying just take everything has it comes but I wouldn't want to live 120 neither 100 maybe round about in my eighties will do bits that me .Best wishes
A normal lifespan was 83.1 for females and 79.4 in UK 2017-2019 - slightly less if you eat the deep fried Mars Bars !That is what the phrase means - an absolute figure - not how many years from diagnosis !
Hi Rob, I get that you are worried, I was diagnosed PV Jak 2 neg shortly after my 50th Birthday in 2005 so will be officially be a Senior Citizen this year.When I was diagnosed I too was terrified about lifespan Google was telling me 15 years.
Nearly 16 years on I have been started on Hydroxy (2 years ago) and am pre MF, I decided a long time ago that this will not define me and just go with the flow. I hope and believe that I will see my Darling Grandaughter who was born last March reach her 18th Birthday at least.
While I understand you are worried my best advice is to live life as best you can at any given time , with an MPN this can vary somewhat.
Eat well, exercise when you can and keep positive.
Hi Rob, I completely understand your feelings, I wouldn’t waste any more time mentally on it, my dad told me about my own illness, everyday is a bonus, it’s all about your mind set, as absolutely no one regardless of illness knows how long they have left. Find yourself a good consultant, then try to get past the second guessing what will come next, find things you enjoy, take pleasures out of the simple things in life, be glad to be alive. I had a person ask me when I was first diagnosed how I felt about the fact I knew I was going to die, and I said and your not? Totally not like me to reply like that. But sometimes it’s just required. Wishing you the best health
My husband was diagnosed at 41 with PV by age 46 he had a bone marrow biopsy which revealed progression to MF so he's on ruxolitanib now and it doing great.We don't even look at life expectancy as you can life a good normal life once your blood cancer is managed .
Science has come a long way now there's lots of new medication out now.
My husband's 49 this year and he's doing really good works full time .
He's seen the bone marrow transplant team that was daunting but like the consultant said as long as they can treat with medication a transplant won't be needed.
So we've stopped thinking about what if and trying to keep positive.
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-- Best wishes. <3
-- How awful. 18 years . I wonder where he got that number ???? 
I totally agree we need to live our best lives and not be shackled by the 'what-ifs'. However, I think there is a reluctance to discuss / look at how those progression statistics change over time (+5 years, 10 year 20 years and beyond), as for most of those diagnosed two decades would be full life expectancy anyway. If others are anything like me - it is the progression over years rather than the management of PV that keeps me up at night. Personally, I don't consider 10% progression after 10 years to be 'rare', and it gets worse over the decades (I read somewhere 25% after 20 years, but I can't find the reference atm). That is why younger people feel lost with it all - or at leat that's how I feel. It seems that living with the disease for multi-decades is very different to managing the disease for only a couple. EDIT: Please do not think I am belittling or playing down the impact of those diagnosed at 60+ - I absolutely am not. I'm just saying that the challenges, specifically the chances of progression, do not seem to be the same. Here is just one reference - I shall see if I can dig the others out. 
Exemption from prescription charges for MPD medication.
ET/Hydroxycarbamide/ Low JAK2 levels - Another update - in case it is useful to anyone. 
Something to make you smile
small lump/bruise on neck
