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Frustrated

I am 46 and was first diagnosed with ET in March 2016 I live in the UK. In March of 2017 my red blood cells were rising and diagnosis was changed to PV. I read lots of posts on the forum daily. Here's what frustrates me... I know that our disease is most common in older people, but I also know that it can be diagnosed at any age, the vast majority of posts I've seen mention medication as if we all get it, and hip replacements and all sorts of old age related stuff... can we please acknowledge that this disease is not only affecting older people. It would be most useful if we could mention our age and country of residence when posting on this forum. Thankyou. Rant over.

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P.S. I'm not an old lady... I'm a middle aged man.

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Hello there 😊. Middle aged covers a multitude of ages these days. I’m 65 and middle aged - well in my mind anyway .... 🤣 My sister is 53 and has ET and she is middle aged - yes? My friend is 37 and has ET - young I would say. How old are you Rob? Lesley x

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Oooh 46 sorry - just saw this 😊

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65?... Retired?... Middle aged?... I don't think so t

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In the UK if admitted to a hospital ward at over 50 you are geriatric. Not trying to affend anyone here, just stating the facts.

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No offence taken Rob 😜

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Why?? Is 65 old age? My you are aggressive! 46 is no spring chicken. There are people in here much younger! All of us around that age will assure you that we feel very young...The years pass very fast and you will find out for yourself when you reach that age and I am also quite frustrated as I don't understand what exactly is the purpose of your post.

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I'm 63. Have ET. Do not consider myself geriatric! There are quite a few younger ones on this forum and I'm sure the majority of us realise it happens to younger people

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I'm not saying that you should at all. I honestly didn't mean to cause any offence. It's just me having a grumpy day.

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Actually, what has always struck me about this Forum is that it’s user profile is probably skewed towards younger patients. It’s true that the MPN population tends to be older and that traditionally people were diagnosed after some kind of event - stroke, thrombosis, heart attack - in later life. But as understanding, diagnosis and management of the disease has moved at an incredible pace over the past decade or so more patients are being diagnosed at a younger age. The fact that this is an online Forum is why I suspect the number of younger (and optimistically ‘middle aged’ 😁) users prevail. From previous posts it’s clear that the concerns of younger patients - pregnancy, parenting and jobs - are very relevant here. And it is not unheard of for parents to post about their MPN kids. It’s great that everyone has a space.

May we all live to 120! There’s nothing like a long middle age!

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As I said, I can't properly understand your point of view unless you state your age.

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He didn't write anything about his illness. So why do you want to know his age?! Very strange indeed and not very polite!

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Couldn't agree more!

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Hmmm. Age is an interesting thing. And to a great extent it is just a number. There are MPNers well into retirement running marathons and travelling the world and those half their age struggling with a history of TIAs and other factors which compromise their day to day wellbeing and long term prognosis. Some people, regardless of their age feel positive and optimistic about living life with an MPN and others low and depressed. And everyone rides a bit of a rollercoaster with this disease. As Kelly2 says it’s good to hear about people’s MPN journeys. And while those journeys may be decades old they may have started at twenty or forty or sixty. The richness of this Forum lies in its diversity of experience and sometimes age is just irrrelevant. What often matters more is your diagnosis, or your gender, where you live and your access to healthcare or if you have or else struggle to find, support. And yes, sometimes the numbers of candles on your birthday cake counts!

As for me, we’ll i guess from previous comments I’d be put on a geriatric ward but I also have three dependent kids, two still at school with the youngest still a long way to go to independence. So I’m not sure where you’d put me!

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Very well put Ebot,

I posted a very long reply to Rob43ET a few hours ago and then deleted it after a while as, on reflection, I divulged more about me personally than I would normally want to do on an open forum.

Now.... I can’t be bothered!

Hope all is well with you,

Xx

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I’m not imagining things then!🤔

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😂, no Mary you’re not. I reeled it off in a bit of frustration myself, then calmed down!

I guess I couldn’t believe that anyone would think when you get to your 60’s you have nothing to worry about! xx

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😳😫😱🤭🤯😲😡😂

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Go Ebot! Well said!

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Hi, actually I would like to hear more from older people and their journey. It's the future that worries me! I would like to know for instance how old is the eldest in this forum!

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Hi Kelly. Yes you’re right. The great thing about this Forum is the opportunity to learn from other people’s experiences - whatever their age. See my reply to Rob above.

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Mate, I am fairly recently 50, also in the UK. 3 years ago I believe I had a dvt, but didn't know it at the time. Flipping hurt, was limping everywhere for quite a few weeks. Then a year later got same, other calf. Had been to docs with a cough, they tested for asthma, but nothing. My wife sent me to casualty. Putting together cough, out of breath (esp lying down) and the bad leg. Well no clot found but I had 2 to 3 pulmonary embolism. On blood thinners. Stopped blood thinners as per treatment, got another bad leg 4 weeks later. Went straight to casualty, they find dvt. Scary how bad it might have been. So then they look at my blood. It's taken 3 years to get this far. Diagnosed PV as JAK2 gene Mutation positive. Had first venesection. On blood thinners for rest of life. Bone Marrow test next week. I know what you mean, I posted about if others feel hot in air con, got lots of menopause answers. Sounds like people get much hotter than I do. I guess we are relatively young? So lucky? Blood thinners and venesection should see me alright at least. And reading people's experiences seem to generally negative, although all pretty much common cause, we are all different and react differently. For me it's fear of bone marrow procedure. So I'll take it one day at a time. I have too many other things to worry about, like certifications work and my 4 kids.

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I know what you mean. I too have 4 kids to worry about and am PV Jak2+ and only on Asprin and venesections twice every 3 months. I live in Scotland although I am English, and have rarely seen the same haematologist twice in 3 years. It just winds me up when people assume were all on the same journey. Work, kids, future... its not the same for older people, they don't have the pressure of any of those things.

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Who said we are all on the same journey? I think you should ask Maz to find you a buddy with similar treatment and age. Maybe this will help you.

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Hi Rob,well when you reach 60,you don't have the same pressures of younger people like work,kids future? In the uk the pension age is rising year on year, the majority of the older generation have kids, grandkids, greatgrand-kids even, and i hope to god if i'm lucky enough to still have a future when i hit 60! I think a lot of people would actually be insulted by that comment that they don't have the same pressures! Were you just having a bad day at the office as they say? Or angry because of the diagnosis at your age? Whatever it is i wish you all the best and echo some of replies,if you want a specific answer to a question than post and ask, stating what specifically you want people to share concerning their experiences but take note that we are not experts,we can only relate our experiences and nothing else. All the best from tina,49 sex (yes please)only joking! Female, uk,Brexiteer, would say middle-aged,diagnosed 38, 2strokes, etjak2+, can't wait to hit 60 cause i will have no worries! And finally i hope you have a sense of humour!... Atb, tina.🤗

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😂👍

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Don’t forget your medical exemption card for free prescriptions.

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Do I get one now? It's costing me a small fortune. 🙄. Thanks for the advice, I shall look into it. Cheers.

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If you are taking any medication including low-dose aspirin for your MPN, that counts as cancer treatment and you can apply for a card.

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You are a hero!I know what it’s like to be falsely diagnosed for 7 years and have a young daughter and very old parents to take care of. Keep well and enjoy your family!

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Hubby has diagnosed at 47 (in 2017) with ET & he's looking towards PV nowadays. He hasn't had any thrombotic event, was diagnosed due to symptoms. We attended the London Forum & he found it the same, that everyone in splinter group were talking about medications & he was sat there juts on aspirin. Some days that seems a blessing, other days it seems they might help relieve some symptoms. It seems medical professionals are waiting for the magic 60. Not keen to wish our lives away so having to get on & make the most of life. Hope you not feeling so grumpy today, we all have them days though.

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Good morning Rob, I am in this forum as a parent of a teenager with JAK2 positive PV , my son was diagnosed aged 14 so not quite middle aged just yet 😀 He has had several TIAs , on aspirin and very high doses of Pegasus and 22 venesection s in 18 months. Personally I have found great support and advice in this forum. I don't go on it regularly but when I've had a concern or question I have had the advice and support on here. Plus I have chatted to other parents of young adults who have reassured us that life goes on , their kids have continued to enjoy their interests , hobbies schooling and going to uni etc. All the things I worried about initially when Conor was first diagnosed. We don't personally know anyone else with his condition and felt very alone in the beginning so it has been so helpful and reassuring that there is always someone who knows what you are going through and what my fears as a parent are. As for the middle aged and geriatric s it's really reassuringvtovgearvthst some of these people gave lived for 30+ years and lead normal lives,I am thankful for their experience. However I can see where some of your frustration has come from, but I think all forums / support groups can just be a place where a small few people think they are experts , it's all about them and lack if insight that although people have the same condition, not everyone or their lives are the same! and these are often the same people who dominate the group. That is my experience as a cardiac specialist nurse who attends patient support groups . You just can't be everything to everyone. I hope you are keeping well Rob and you are starting to feel in control of your health. I believe we all ( parents included) go through an adjustment period trying to come to terms with a chronic condition. Perhaps your frustration is just part of the emotional rollercoaster. I know I've definitely been there as has my son , husband and Conor s younger sister. It affects everyone. Take care and glad you got it off your chest 😀

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I know that much younger people are affected by this disease which doesn't discriminate, any one of us could be diagnosed at any age. But that is exactly my point... we're not all old people. I was diagnosed at 43 but I suspect I had it for many years prior to diagnosis. I too have taken much comfort from the input of fellow sufferers on this forum. All I'm trying to say is please could people posting questions on here NOT assume that we are all on medication which doesn't kick in until we are either over 60 years old ( yes according to NHS that IS geriatric ) or if we have had a serious event such as TIA, stroke, heart attack or pulmonary embolism ect.

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Hi Rob43ET,

I haven’t noted any evidence that forum members have as you say , ‘assumed that we are all on medication.’

I can only speak for myself here. For example, if I were to discuss medication in response to a post, that wouldn’t mean I assume everyone is taking medication. It is just relevant to that particular post.

I can understand your frustration in that you have been diagnosed with PV at a young age, and the associated worries that come with that. I have experienced this too when my husband was diagnosed with a debilitating disease at the age of 31.

It might be that some days the posts do refer to medication etc which clearly does not apply to you and that can be frustrating. But equally, young people do post too. I personally think the posts are pretty diverse, from medication to newly diagnosed, Insurance queries, diet related, progression worries, etc etc.

All I can say is, I’m really sorry that you feel this way.

Mary ET (Jak2+).

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Oh come on Mary don't lose your time trying to answer the unanswerable! Don't you see that Rob does not know what he really wants from this forum? Is he here to scold us or something? This is how it looks to me. We were all very polite but he keeps going on and it does not make any sense.

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This is getting way out of hand now. Can't we all just agree that we have different opinions on what should and what shouldn't be posted on here. This is getting annoying now.

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Posting comments naming other members and talking about them is not what I would call polite.

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There is more that goes into the decision to medicate including the levels of different components of blood

Daily aspirin is a medication that a lot of people go on immediately. Once any medication is taken then entitlement to a Medical Exemption Certificate for free prescriptions begins.

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Hi, I can understand the need to know the other's age to relate with your symptoms but the country of residence why? Too personal I would say! We are incognito here!

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Hi, the country of residence is of use if you live in the same county. For example which treatments are available and where are the best MPN specialists. In USA for example treatment with drugs seem to start at any age no matter what history or symptoms, while in Uk treatment only starts after your 60th birthday or after a significant event such as DVT, heart attack or stroke/TIA.

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You can always put a straightforward query about just anything you want to know. People who know will answer. Simple.

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Hi am 62, diagnosed ET at 50, was treated in UK from the start due to platelet count almost two million, no major events, not sure how this works for other MPN’s, I like to think that it’s ok for people to share as much information as they feel comfortable with on this forum, if we have individual questions we are free to ask them and make the most of those replies, the freedom to do this is paramount. Rob if you want to know about young people, people in UK, ask the question, if you have questions re treatment or medications, ask the question. Others with similar experience will reply. I remember well the confusion, anxiety and fear I felt on diagnosis, this forum has helped me to accept what is and live my life knowing others have travelled a similar road.

I wish you well Rob and apologies if I have duplicated any comments.

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I'm 49 now I was diagnosed with ET at 16 SCT at 46 for years I just took the tablets and got on With it keeping active is the best plan.

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Hi Rickyd

That’s a lovely positive post. I’m sure it will be inspirational to many on here. I hope our young MPNers and particularly Conor and his family are encouraged by this.

Good luck to you

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I ended up on blood thinners, Rivoroxaban, I think because they proved DVT and PE. I really don't think it was age related. I think if they had found PV before the DVT PE, I probably would have been on aspirin.

No idea what the difference is between them.

I'm no doc, but hope that helps.

😁

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Good suggestion regarding stating which mpn you have and age

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When I suggested that some months ago,and also the counts, Maz was upset and said that no one is obliged to give this information!!

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No one need give out private info. If someone has mentioned they have PV then usually I don’t respond. I’ll just give them a text hug. ( I’m 63 ET)

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Thanks

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Hi rob43ET I have Pv jak2 positive age 55 am. I'm confused with your comment about over 50 is geriatric according to nhs whilst in hospital for a week last year no one mentioned the word geriatric

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The aim of this forum is to provide a welcoming, practical, informative, supportive and non-judgemental platform where people, of any age, from any country, who have a MPN themselves or support someone with a MPN, or know someone with a MPN can ask questions. It is not a requirement that anyone posting or asking a question on this forum has to give any information that they do wish to, it is entirely up to each person what they share with everyone.

I can see the point that it would help others when reading a post/question to know what MPN, what age, what medication, what country etc but some people do not want to share that, the fact that user names are a requirement, and that is the ruling of HealthUnlocked, not MPN Voice, makes a lot of people feel much safer and happier using this forum, and I know that from speaking personally to people who use this forum.

I am sorry Rob that you are feeling so frustrated about this, but I feel that we have a very good, broad range of ages, MPNs, medications etc and views on this forum, and there have been times when people have been upset by some comments and things have been a little 'heated' but that again makes this forum real.

Treatment can start at any age here in the UK, it is not always entirely dependent on someone reaching the age of 60 or having a TIA or stroke, yes, these are the guidelines, but they are not rigid, there are many people much younger than 60 who are taking medication not necessarily because they have had an event, but more to prevent it, or to help with symptoms affecting quality of life, as in my case, I was diagnosed with ET a week after my 44th birthday, and I know I had had it for a few years before that because of the symptoms, and I started medication when I was 48, because of the symptoms, I am now 59.

What we all have to remember is that, we are all different, we all have differents views on any subject you want to mention, and we have to respect that.

Maz

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Thank you Maz for this most considered reply to the original post. I can't have been the only person initially upset then cross at the implication the forum was only interested in older people and that we are basically a waste of space, of no further use to society or our families. Forum members don't need to be told how essential us supposedly "oldies" are to the workplace (women in their sixties aren't geriatric in the government's pension arrangements) and to our children/ grandchildren and our own really elderly relatives! Being in my mid sixties I get weary of the press going on about "the ageing population" and the drain on the NHS and any implication that we are of no further usefulness to society or our families is so wide of the truth to be laughable. I can assure the poster that the "pressures" are still there , just differently skewed. Should I feel guilty now to being on a very expensive drug?

This forum is a fantastic resource and comfort. Being diagnosed 30 years ago the only resource was the library - told not to look it up, did so and frightened myself witless and fearful for my husband and young children. It was years out of date even then. I only met one other person in 20 odd years at clinic with ET and we only had 5 minutes to exchange information. Discovering that there had been others of us out there was amazing but also what is so interesting is how far treatment has come on. Rob complains it is assumed everyone is "on medication" - well I wish the years could be pealed back and perhaps I might have been "wait and watch" though with the symptoms and platelet levels possibly not. I notice other people of a similar age on the forum who were diagnosed in their 20s and 30s, were immediately treated like me with a highly toxic drug, rarely used now and possibly that has led to present complications. However it was "best treatment" at the time.

We live in exciting times with fast moving genetic breakthroughs, different treatments for different patients and new drugs in the pipeline. I can remember how excited my consultant was years ago when Jak2 was discovered - needless to say I didn't have it and had to wait for Calr to emerge from research. I hope the original poster and all younger members will benefit in time from personalised drugs. In the meantime I really appreciate hearing other people's experiences, whatever their age, with the different drugs and get reassurance about similar side effects and potential new drugs if the present one fails - makes it all less worrying and at times bearable.

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Hi just a quickie- although rare not all joint replacements are age related or due to being overweight. You may have seen my post re hip replacement last year aged 41 (keen sportswoman till that point) with my PV and I found posting here very helpful for advice.

Hope you manage to link up with similar aged people with your condition. There's definitely plenty of us in our 40s on here.

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Hi there I understand your frustration.I am 56 diagnosed at age 46yrs I live in UK have ET and jak 2 pos first symptom was blood clot in the brain and find that due to the rarity of this condition we are constantly learning new things.Compared to 2009 this is a time of hope.

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I thought my rant was not too offensive and was not written in an angry way. It is just my opinion.

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Hi Rob, I don’t think your post is offensive whatsoever!

This site is full of older folk having a moan, and that actually can be helpful sometimes depressing, too, but why bite Robs head off for doing the same thing?

I’m 64 and was diagnosed 10 years ago. To have this condition at your age, probably having to go to work not feeling exactly on top of the world, maybe with family and mortgage to support I think must be the absolute pits.

My heart goes out to you. I’m retired and have a wonderful husband who is an absolute rock.

The youngest person I’ve met with an mpn is 23, and I’ve buddied about 33 ladies the youngest of whom gave birth to a little girl about 2 years ago.

I live in the Lakes and I for one, understand completely how you feel.

You’re a young man, not middle aged at all, and its completely bloody unfair that you’re having to put with this disease, cancer, condition - whatever you might want to call it.

However, I would say, that I think by the time you’re 60 ( sorry I know, light years away) or before, a cure will have been found. I fully intend to be around to see it!

Do remember that for every moaning old post there are probably 100 mpn patients out doing ok and you’ll be fine.

Like you I think there’s too much undercover stuff on this site.

Why can’t we know everyone’s name, age, and where they live?

Who gives a toss, do they think some sad soul is perusing health unlocked saying “eeee look, Tallulah from Solihull has got PV! “

No!

So come on folks, less of the cloak and dagger stuff.

Have a great Tuesday, get out there and have a jolly good walk if you can and get those endorphins whizzing round.

Love

Louise Broughton Windermere Cumbria aged 64 and 65 on the 12th May!

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Ha! Spring chicken. (Andy, 68 and rising, Leafy Chalfont, from username picture either I'm male or an extremely ill-favoured female.)

As for grumpiness, I use my PV as an excuse for indulging in it - most therapeutic and satisfying. Witness my username.

Andy

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Canada 68 Male Diagnosed 18 months ago.

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