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PV at 28

Hey guys! I'm a 28 year old man with recently diagnosed PV. My counts are "borderline"178hb, 50 hct and 460 platelets. Starting vanesections and aspirin soon. My clonal copy of v617f - allele burden was 12% (jak2). And epo was low. I am really worried about the future and have spent so much time reading about PV online, statistics regarding survival etc. Some statistics are comforting, other scares me. As far as I've understood prognosis is good as long as we're monitored and treated. But it is the risk of progression that I'm worried about. I am still young and have much to live for. Should i still have goals? Chase my dreams? Forunately i don't have any real symptoms at the moment. I guess I'm not high risk. It feels weird to have such a rare disorder at this age. I have always been healthy, no other health problems. Just feeling anxious and worried right now. Im seeing my hermatologist next week, feel worried. Any toughts and shared experiences? Thanks!

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Hey young gentleman :) This is the simpler MPN you have ...... make sure you manage your blood outcomes intelligently by using the knowledge available to you , very well . Of course you can have goals , dreams and a long gainful lifespan. Treat this condition as a means to learn to value your gift of life even more. Do you have family or close ones ? If so then use their support for positive reinforcement when you feel low ....... else this support group is fantastic too ..... just speak out here and be sure someone will reach out to you :) All here belong to the MPN brotherhood in some way after all ....... All the best !

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Thanks a lot. It's very confusing with all the various informations about this disease. Among some sources it seems to be very manageable and most often not too serious. Other sources makes it seem very serious and life threatening. This forum is going to be a great support. Yes i do have family for support when i feel low.

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Hi. I cannot help you much on the PV side as I have ET, but I would recommend that you use mpnvoice.org.uk and any links that they provide as your main source of information. All information on the site is verified by MPN experts and is therefore reliable.

Good luck, and enjoy life to the full

John

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Thanks John!

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Please don’t worry. Within 5 years there should be new drugs and combo of drugs which will stop or dramatically slow progression.

Hems say even if they can’t find a cure, they will keep finding new drugs to buy time. Hence you should live a normal life.

And worst case, there is SCT. Risky at the moment with 60 - 85% survival depending on age and how progressed/aggressive the MF is. However my bet is that these odds will improve dramatically within 5 years as new drugs for GVHD are discovered and alternatives to chemo investigated.

There really is a lot of research going on, massively more than ever before. Hems understanding of the mechanics of MPNs improving all the time.

In the meantime, you just need to minimise any risk of thrombosis - this means eat well, exercise and regular blood tests to check your HCT.

Are you on aspirin? And have you had a bone marrow biopsy?

If you are offered HU or Pegasys, check out this Board before deciding. There are an increasing number of Hems who are coming around to the view that Peg MIGHT slow progression but there is not yet sufficient long term clinical proof. Recent trials, especially Ropeg v HU after 3 years, are encouraging. Pegasys should not be used if you are prone to depression and auto immune issues.

Best Paul

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Thanks Paul! You seem well informed on mpns. I have read many of your posts now and you have very good and comforting things to say. I haven't had a bmb yet and i'm not on anything att the moment. I do feel like I've always felt, meaning symptom free. But I will probably get those things handled soon. But as far as I've understood progression is much age related, and the longer you live with mpn the increased risk? On the counter, as you pointed, new drugs are in the pipeline and our mpns usually progress very slowly. I'm a member of a Facebook group and haven't heard of anyone dying or anything. Many have been around 10, 20 and 30 Years. So i feel more calm and optimistic now. Thanks!

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And I am really looking forward to ropeginterferon! Should be released this year?

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Progression risk over 60 yoa is double under 60 and I assume curve exponentially upwards. Hence you should be very low risk. Add in no symptoms and you should have a long time to wait for improved treatment plans.

I’d be amazed if no ‘cure’ discovered within your required timeframe

Best

Paul

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Hello, so sorry to hear about your diagnosis , it is such a worrying and frightening time for you. I personally don't have PV but my son was diagnosed 16 months ago as JAK2 positive PV at the age of 14. I totally understand the uncertainty and confusion you feel in relation to the conflicting information and that all the information including risk is often written in relation to >60 years of age and you think well why has this happened to us? You will most likely go through a roller coaster of emotions which are normal for what is a life changing experience for you. This I call an adjustment period, coming to terms with what has happened, why and where we go from here. With the help of a good haematologist who can help you understand and come to terms this complex disorder you will feel back in control of your health, and it will become a new normal. I did struggle initially more so than my son as I worried about his dreams, goals and his future just as you are. He still has all his dreams that any other 16 year old has! GCSEs exams this year to focus on, college choices etc, life goes on, he has to look forward to a bright future. It is not the road we have chosen but we have had to take an alternative route but with the same hopes and dreams of getting to the same destination. For now, try and avid reading all information on line and speak to your haematologist, hopefully your hospital has a specialist haematology nurse and get the advice , information and treatment that is relevant and individualised for you. Are you in the UK? Try and be referred to a specialist centre, we travel 70 miles to Addenbrookes in cambridge and it is so worth the journey as we feel more supported, reassured and feel we are getting the best care. At our local hospital we are for ever explaining Conors condiiton and correcting the doctors, We now know more about this condition that general docs do, especially the paedatrics as it is even more rare in paeds!

So Key points :

Give yourself time to come to terms with your diagnosis, this includes having a good cry, shout scream etc.

Avoid reading too much info on line, get relevant information for you from your haematologist . Ask if there is a specialist nurse ,they will be a great contact for you.

With good monitoring and treatment such as aspirin and venesection's for now this may well keep your bloods well under control You may have " bumps in the road" where treatment alters or changes and they might need to add new treatment in at a later time. It is so reassuring to hear you have not had any symptoms so far and the fact this has been picked up early will possibly mean a much better prognosis for you.

Review your lifestyle if necessary. Do you smoke? if so you have to stop smoking , lots of help out there to stop smoking . Eat well, drink plenty of water, regular exercise. You might feel a little more tired at first after venesection's but this may improve. Conor has now had 21 venesection's and he takes them in his stride, does PE, plays cricket.initially his energy levels dipped and he tired quickly as the aim was to keep him iron deficient but he has more energy recently as he now knows how to pace himself, avoids "boom and bust".

I hope you are not exhausted from reading this long reply, i hope there is something in here you might find useful. Just allow yourself time.........

use this group for advice and support . Take care, Christine

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Thanks! Great to hear how your son is doing well! Honestly, Iv'e always had a high blood count ever since my teenage Years . But been doing well so far and still feel good. So yes its a blessing that i dont have the symptoms many with PV have. I actually live in Sweden haha. But yeah I will demand seeing a specialist for best possible advice, monitoring. I do feel a bit calmer now and yes you're right. There seems to be a lot of outdated crap on the internet that is not relevant with the treatment and options we have today. Theres even less info on how young people with mpns has fared. Anyway those I've came across on the internet are still living and thriving so I'm optimistic. And, no, I do not smoke :).

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Nothing for young people ! Good luck with everything.I have no idea how healthcare works in sweden but hope fully you will get a good haematologist. Live for today and enjoy life. take care Christine x

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Hey, I would like to offer some comfort. You have not had symptoms and yet it has been picked up so this is good news. You are still young and there is no reason not to live life normally. I was ill for 4/5 years before diagnosis and felt like I had lost those years, so finally getting the diagnosis as much as was a shock at 35 it was also a relief. I went on to live my life better than I had before. I started to run races and do more exercise which helped with the fatigue. So although my journey now at 44 has changed I can't say it is all because of PV but it made me value life and not put things off, as we should live every day well and never take anything for granted, don't see this as a negative. I went travelling in my late thirties and I was fine, just some extra blood thinner for long haul flights. I had more energy than any of my friends without PV. I bought a MX5 sports car (selfish with only 2 seats haha) as I thought why not. Another piece of advice. Don't google too much. Come to this form look at the MPNVoice website as Prof Claire Harrison is the leading expert in the UK and I am blessed to be under her care now. Also Patient Power is a good resource and MPN in US has some good information but I just come here, where I trust. I know you are not in the UK, but if you need someone to recommend the best person for you then she is the person to ask. Also, just like with anything health is your wealth, so look after yourself, exercise, eat well (personally I am plantbased) and drink plenty of good quality water. Limit alcohol if you do like a drink. Also don't jump onto drug therapy unless you REALLY need it. I have seen too often some haemotologists try and put people on drugs at young ages when they do not really need them. I take aspirin and am now on watch and wait because I tried a drug and I had horrible side effects so I won't try anymore. I also have bladder cancer (apparently unrelated) so I have something else to focus on but working on this with diet and once my foot is healed (unrelated foot surgery to correct big toe) then I hope to be back up and exercising as I definitely found this best for any fatigue. Believe me when I say I understand when people want to know why me and what caused it, I feel like this about both cancers but sometimes we may never know the exact cause but we should be mindful of today and be present and live for the moment and still have goals and aspirations for the future. Happy to chat anytime and wish you all the best for 2019. x

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Thanks! Wow your'e really been through a lot. And I am sorry about your bladder cancer, hope you'll be alright. This is an excellent place. Thanks for all the advice, I feel better now and you are right. We have to enjoy the present. That goes for everyone, mpn or not :)

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Thank you and exactly! All the best.

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Hi, I also have PV, diagnosed in 2014. I lead a normal and very busy life with full time work and teenage sons, and hardly think about the disease anymore. I have been on Pegasys interferon (and low dose aspirin) for over 3 years with great results, minimal side effects, normal bloods and injecting only a tiny dose every 3 weeks now. Pegasys is advised for younger patients as it is not chemo, and can lead to haematological remission in some cases, especially if taken at diagnosis, so it would be worth discussing it with your haemo. So don’t worry, there are good treatment options these days that allow you to live a normal life with this disease. All the best to you, Susana x

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Thanks susana! Yeah, I would like to go on ropeginterferon once its released since i heard its more tolerable. One danish guy in a Swedish PV forum was diagnosed at 17. And he's 37 today and was using interferon for 10 Years until he was 27. His allele burden is now barely detectable, at 0,2% I think. Anyway hes been of medication for 10 Years now! So it seems that interferons are indeed powerful but they take time to give optimal effect. It's comforting to hear you can live normal with PV :)

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Hi, I too was recently diagnosed with PV. I am 39, with 2 small children (4&7) & a busy full time job in the City of London. So like you all to play for! Also similarly to you I have been feeling scared. Bewildered at the diagnosis, afraid of what I’ve read & fearful of what might happen in the future. I was diagnosed a month ago & since then it’s been a whirlwind of venesections & hospital visits. I’ve had a month of 1 minute feeling fairly positive the next really low. The last few days particularly bad & mentally I hit a wall. I am under the Guys Cancer Centre in London & the nurses & my haematologist (who specialises in MPNs) are so great, they really picked me up when I visited yesterday. We had a long chat & I wanted to share with you 3 main things they told me that made me feel better in the hope it will make you feel better too.

1. The first 6 months or so of any new diagnosis is the worst. It is natural for the human brain to go through a rollercoaster of emotions as it comes to terms with what is a significant & scary piece of news. My haematologist assured me in a few months the intermittent positive feelings will overcome the negative & PV will become part of my life but not dominate it. The fear will diminish.

2. Do. Not. Read. The. Internet. Dr Google is not medically qualified, out of date & doesn’t know you! My haem mentioned this forum (only) as a good source of info if you have specific questions/need support, but said take everything you read in the context of it being someone else’s story not yours. He has hundreds of patients who lead perfectly normal lives for decades. There is no reason you won’t too.

3. Like me, you are low risk. Your age & general health works in your favour. I too have been worried about progression but like my haem said it is a ‘chronic’ not necessarily a ‘progressive’ disease. He told me to ‘park’ any fears over MF/AML, the risk is low (lower than Dr Google will tell you) & even lower if you are low risk as you are. One of the nurses told me in 6 yrs & all the hundreds of people they venesect she had not seen a single progression to AML. My haem tells me the strong likelihood is that low risk patients will stay stable for years & only need medication at 60 (he says probably 65 by the time we get there!). That’s 35+ years away for you. Medicine only moves forward & we can only imagine what progression towards a cure there will be by then.

So, in the context of this advice I was given, I am being gentle with myself during this tricky time. I rest when I need to, push through when I feel I can & allow myself to feel however I need to while I’m adjusting. I believe things will get better & I will eventually live alongside PV rather than under the cloud of it.

I hope for your continued strength & courage & send you my very best wishes.

Emma

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Aren't we blessed to be under Guys Emma. I see the health pyschologist and she is amazing and it helps to have someone to listen to me without burdening my family. I have learnt so much about myself. Good luck with your journey. x

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Hi, yes we are. I feel incredibly fortunate to be able to go there. They mentioned the health psychologist to me, the nurses said they have been helped by her so definitely think it is something I will do too. Good luck with yours as well.x

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Thank you so much for your reply. I am feeling a lot better now. It is definitely not a death sentence this disease,since iv'e already encountered plenty of people having it for 20 and 30 Years, still doing fine. And yes, I have stopped googleing. Screw dr.google ;). Like you said, prognosis is only getting better and better with new treatment. Just need to take care of myself. I wish the best for you and I'm really glad I found this forum. Cheers!

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My husband has had PV for 6 years he's been on hydroxy the last three years. In October he had a bone marrow biopsy and his PV has progressed to early stages of myelofibrosis.

Apart from exhaustion he's got no other symptoms.

He's waiting to see the stem cell transplant team but he's not ready to go ahead with this just yet. There is medication that can help .

Try not to worry too much as my husband still works full time. Not every patient is the same .

When he was diagnosed in 2012 we thought our world had ended after reading life expectancy etc but this blood cancer and research have come a long way .

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Thanks for your comment. Sorry to hear about his progression, how was it picked up upon? Did they notice changes in his blood count and decided to do bmb? Im sure he will do well given hes not that old and can even work full time.

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Hi,

My husband had an uncomfortable feeling in his left side so his consultant requested a scan on his spleen which showed it had grown 4cm in the last year his spleen is now 20.02cm. this lead to a bone marrow biopsy which revealed fibrosis in the bone marrow.

Try not to worry as my husband still leads a normal life works full time and we still go on holiday.

We are concerned about a stem cell transplant and this would be my husband last resort.

Hope this helps you.

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Morning young man

I have PV, JAK2+ and had been suffering for a long time.. I was diagnosed 5 years ago, my numbers were through the roof, my GP had ignored previous blood results, but, that’s another story,

I have long got over the “I have PV and cancer bit”, I no longer regard it as a cancer, but a condition. That was stage one..

Stage two, I joined a Facebook Page and tries to be as positive as I could, but some on there had decided it was a way of life, they eventually kicked me off for being too positive.

Now , my take on my condition…

I’ve been diagnosed and have been on aspirin, venesection (52 in 5 years) and Hydoxy. I am down from 17 Hydroxy a week to 3, have been injecting interferon for over a year.

I have regular blood tests, so anythi9ng of of the ordinary will be picked up, A POSITIVE, better than the average Joe, who may feel ill, but is unaware of a problem, possibly until it’s too late…

My bloods are relatively stable, the odd up and down..

So don’t think of it as totally negative, there are pluses..

I suspect the current medical thinking is to reduce the risks, that may reduce the symptoms and in the future, they will make strides to fix that JAK2.

Don’t let PV rules or change your life, it’s a bloody inconvenience, but that’s it… Think positive and enjoy your life.. I’m 63 this year and I walk the dog, travel in my motorhome. Learning to play the guitar, I have two elderly parents, dad had a heart attack the day before his 91st birthday, in hospital until |Christmas eve, mother is struggling with memory issues and early dementia..

When you get to my age, PV will have been fixed, you will live a normal life, have 12 grandchildren and a tattoo of Felicity Kendal.

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Thank you so much for your message. Haha,12 grandchildren is not bad :). I dont really feel sick at the moment so thats good. And I love your positive outlook, crazy they kicked you out for it.

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Not really, the ones who ran it wanted to make a living out of it, they still smoked etc. As I said there are some benefits to PV, regular blood tests etc.. Plus, some nice staff. I have beem going to Leicester General for my venesection, its like meeting up with family.. When I wanted an urgent venesection they came up with the goods. Think of PV not as cancer. Enjoy not paving to pay for the prescriptions and go and have a beer or too... Life is too short and valuable...

Do at the doctors tell you, regular testing, yu will be fine...

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Hello Yeah12, welcome to our forum, I hope that it helps you to be part of our forum, as you can see, the people on here are very supportive and informative. I would urge you to read as much as you can on our website mpnvoice.org.uk and also look at some of the videos of experts and patients talking about MPNs and medications. We all understand how you are feeling, it is a very scary time when you are first diagnosed, wondering what the future will hold and the impact your MPN will have on your daily life, so take your time to read and learn and understand PV and try not to worry too much. Best wishes, Maz

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