Hi @Lucky I love your positive attitude.
Perhaps tell your medical team about your skin problems and see if they can help.
Look after yourself and please do let us know what they say
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Oh Iām sorry to read that about your skin being affected. Apparently skin issues are pretty common with Polycythaemia vera (PV) and hydroxyurea, unfortunately. Skin photosensitivity and permanent dark lines under my eyes are joys Iāve been experiencing more of.
My skin also started getting really dry in recent weeks, very annoying. My family doctor suggested all sorts of moisturisers that I probably wouldnāt ever use plus shea butter which I love the smell of. Havenāt tried it yet as I had already started using a different moisturiser with SPF which seems to help. Oh and of course drinking loads of water all day helps hydrate our skin.
As for therapy, personally I think everyone would benefit if more people had it, like how we see our doctors for checkups and maybe even consider it self-care. Although my bias is showing as I am a psychotherapist!
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Thanks, yes, I mentioned the skin problems to my care team and sent photos but the problem is getting better on its own now Iām back on the lower dose. It may get worse again when I have the double dose this weekend.
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Thanks. I was shocked how quickly my skin started to break down. I use diprobase which really helps - much better than my wifeās moisturiser. Iām pretty careful about hydration too not just for the Polycythaemia vera (PV) but to avoid a repetition of kidney stones (very painful) but it helps my motivation to have a third reason too.
Iāve never tried therapy - my upbringing means it isnāt even on my radar. This has its positive and negative aspects of course. Iām really OK with having Polycythaemia vera (PV); it could be so much worse.
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Interesting that your skin changes so quickly when youāve had higher doses of hydroxyurea. My haematologist plans to increase my dose soon, now that my haematocrit and other blood cell statistics seem to have levelled off in their normal ranges. Definitely a lesson in patience! Wonder if Iāll note changes when I start on the higher dose like you.
Know what you mean about how our upbringings affect how we approach health. With hindsight Iād say I was a little too cavalier with my physical health, thinking that being healthy and active would keep me healthy overall. Alas, random gene mutations and other concerns got in the way of that youthful ignorant bliss!
Really glad that youāre okay with having Polycythaemia vera (PV). Itās good to know others living with it are tolerating it well like you, @Lucky. It really can be tolerable, and it could be so much worse like you say.
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Hi @Lucky this is a very person reply but I found that talking therapy helped me, it certainly isnāt an instant fix though and your relationship with your therapist is key.
Therapy wasnāt even thought about during my upbringing either, but it is not for everyone, I think you have to be open to it.
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I mentioned my skin problems to the care team as a non-urgent issue. The consultant was not worried by it. Curiously raised red rings have developed around a couple of the spots so I may raise this separately.
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Hi @Lucky perhaps a GP appointment is your next stage?
It doesnāt sound non urgent to me.
Please do let us know how they get on and take care of yourself
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Hi Erica, tried to get a GP appointment but no luck. Called the specialist nurse who after checking with the consultant said I should stop taking hydroxycarbamide and take an anti-histamine. The consultant will see me on Tuesday. Hopefully it will settle down.
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Iām sorry to read of those continuing skin issues @Lucky. Yes, adding to what @Erica said, maybe pass it by your consultant next week. Sounds like the specialist nurse thinks itās an allergic reaction if youāre taking an antihistamine? Hopefully itās not a big deal and settles down quickly 
Oh and I totally agree @Erica, Iād say if thereās no spark with your therapist then itās going to be harder to form a relationship to work through personal stuff. Iāve been known to end therapy when it was clearly not working, for example due to their homophobia or class issues. Rather not waste my time and money on all that nonsense! Nice when you can see the same therapist for years though.
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Hello Everyone! Im from Hungary , Sorry if my English is is not perfect. Im 49 years old and father of my 12 years old daughter.
I just got my JAK2 test poĆtiv a couple days ago and I fell the whole world collapesd on me.
Iām physically fit without any symptons , but mentally Iām terrified.Till two week ago I just had the best time of my life,beautiful family and not to worry about anything.And look at me now ,diagnosed wirh cancer and dealing with the lowest depression ever.Can not eat, sleep and thing anything just thinking how much time i have left.Please I need some support.
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Hi @Rigalanc welcome from Hungary to our UK forum and you have had a great big shock so I think it is natural to feel terrified and depressed, your world has been turned upside down.
I have a different blood cancer and I was diagnosed 20 yrs ago and I came home and wrote my will and funeral music. I felt in a bubble and the only person in the world in the situation I was in.
I am still here and my life is good.
I know this is not easy, and I am not a medical person, but self care is really important and we need to eat for body fuel and to sleep to allow us function in a balanced way.
Nobody knows how much time we have left, I thought I had my life mapped out in front of me.
You say you are physically fit without any symptoms so, I know it is not easy, but try and just go out and try to enjoy life with your beautiful family.
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Welcome to the forum and sorry to hear about your diagnosis.
I too have Polycythaemia vera (PV) so understand and can empathise with your plight.
I think the word ācancerā brings a lot of uniqueness and peoples personal experiences of what the word means.
What is important is to realise that cancer is a very broad word and yes can mean the future looks very daunting and doomed but depending on the type of cancer and the timing in which itās diagnosed can be a huge factor.
The fact that you are healthy and not experiencing any major symptoms can and should be taken as a huge positive to continue living life and fulfilling those dreams you have.
Polycythaemia vera (PV) is a very slow building cancer as many have said and been told itās most likely you will die with it rather than from it. I know this can bring no comfort especially from a stranger but I would say speaking from one that has been diagnosed with your condition for a few years and knowing others on here that have been diagnosed with Polycythaemia vera (PV) for many years that as long you and your medical team are being monitored and keeping an eye on any changes youāre going to be ok continuing with what you are doing and doing your best to keep it that way.
It wouldnāt surprise me despite your diagnosis that if youāre fit and healthy (as you appear to be) that no treatment or drastic changes will be needed until levels and symptoms become more apparent. This may take days, weeks, months or yearsā¦ itās all very dependent on you, your body and your mind.
I donāt wanna sound preachy or an advocate for the type of cancer and what to expect or tell you what the future holds for you or tell you what to do or feel as with cancer hitting 1 in 2 people everyone is different and itās about you understanding and living with yours.
Youāre now at a junction at the end of a road with a roundabout and itās now deciding what your next road you choose and where itās going to lead you. But remember that whichever road you take there will be many more junctions/roundabouts going in different directions for you to be driven towards or for you to choose.
Be sure to remember despite being far away we here are only a post away
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@Erica @Rammie18 Thank you guys , these replys means a lot to me.
Unfortunatly in Hungary not to many trustable information online, and also the health care is in horrible condition. Im waiting for my dr. call me back on wendesday .
I still cant believe it is haapening to me, maybe just going to wake uo from this terrifying dream.
Im non-stop crying and lost all my motivaton .
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Hi @Rigalanc please donāt be too hard on yourself perhaps you are still in shock, I was in shock for ages and my mind was going in all directions which is absolutely exhausting and meant I had not got the energy to have motivation.
What I am pleased about. is that you are able to cry, because I bottled up all my emotions which did me no good at all.
Yes, it does seem surreal and I felt the only person in the world in the position I was in.
You have found us now you are not alone.
I would say to give yourself time and be ever so kind to yourself. Perhaps get back into a healthy routine, looking after yourself and keep posting as @Rammie18 says we are only a post away.
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Give this a read if you havenāt already
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Hello @Rigalanc, welcome to the forum! Iām so sorry to read about you testing positive for the JAK2 gene mutation. I have that gene mutation too, and many others on the forum know what youāre going through after a terrifying test result like that. You describe so clearly how you feel. I hope it feels helpful to open up here, itās been very supportive for me since my own diagnosis last year.
Perhaps you have read that the JAK2 gene mutation is often related to MPNs? I wonder if I may ask, have you been diagnosed with an Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV)? People with a JAK2 gene mutation donāt always have blood cancer, but sadly usually do about 97 % of the time.
I am a similar age to you and after a year of treatment for Polycythaemia vera (PV) my blood cell numbers are in the normal ranges again. Such good news! This was my haematologistās main goal for my treatments. A year ago I was so anxious about Polycythaemia vera (PV), about how it might shorten my life, and about what it would be like to live with Polycythaemia vera (PV). It was horrible. I know how bad it can feel.
Honestly, with a lot of self-care and trusting my haematologistās expertise and my nurses who I see for treatments, I actually feel okay now. It seems like I can live normally with Polycythaemia vera (PV)! Incredible to believe that my life can continue with minimal medical intervention and I can go about my life normally. I still hike and eat vegan food, but now I avoid the midday sun, I try to not get stressed, and I rest when cancer-related fatigue is bad.
So I hope you come to feel like life is not actually over, although I know itāll take time to really believe that. There are lots of treatments for Polycythaemia vera (PV), if that is what youāve been diagnosed with. Please trust that it can be lived with healthily. Iād say you are fortunate not to have any symptoms.
Try to give yourself a break and avoid reading about all this on random websites. If you want to read about it, stick to reading proper blood cancer websites like this one as the information is more accurate and up-to-date.
Keep us posted about how youāre doing, @Rigalanc.
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Oh @Rigalanc I forgot say, a good thing to do before appointments with your haematologist and other experts is to write down all your queries, long-term concerns, medical questions, anything that comes to mind. You might find it becomes a big list, or maybe even like a journal. Just write it all down. Take it all to your appointment on Wednesday and see if your doctor can answer, and maybe even help you feel less worried too. Let those tears out, itās good to express all this stress. Itās a worrying time and getting it out can help. Do let us know how it goes with your doctor.
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Hi Guys! I just got back from my doctor.So now Im a official Polycythaemia vera (PV) patient.
They took 3,5 dl blood from me and she put me on Hydroxycarbamide. Any opinion. advise about it?
It has to many side affect. I read. The dr. told me, after a couple months I can leave this pill and start taking Pegasys.
Anyway Im still in shock and I fell I never gonna be the same person again.
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Hydroxycarbamide is probably the most tried and tested form of medication and also the most common.
Yes the side effects are alarming just as the notion of having cancer and having chemo.
As itās very common you will read a lot of patient experiences both good and bad and itās important to note that for as many negative posts there are about hydroxy there are plenty more else it wouldnāt be in circulation.
I was really nervous about starting hydroxy as out of everything it was starting that that me having a form of cancer really hit home.
Itās worth noting that though hydroxy is more of a one shot fits all, it is the gateway of more options of alternative treatments. Like you will only have access to certain meds if hydroxy hasnāt worked. Same goes with potential future trials.
Upon my own experiences of hydroxy is that it really did control my white blood cell and hct and platelets down and I generally tolerated it well continues to do my daily routines and activities. Though I was coping with it wellā¦ no sickness or secondary effectsā¦ out of all my treatment routes I was extra cautious in that I was avoiding staying in the sun and avoiding what appeared to be ill/sick people which to be honest isnāt a bad trait. Iāve read and communicated with so many people who have been on hydroxy for decades and continuing to live life as a ānormalā person.
Like I said people have a sigma of chemo and hear or envisage the common stereotypes but this is a much different type of chemo.
Donāt let the side effects scare you too much, they have to write them as a disclaimer but also to prepare you for worse case scenario or what change you may notice that you could pin down to the meds.
Starting any new medication can a high chance of showing some initial symptoms are you are putting some foreign in your body thatās intended to change something internally for the better. Iāve learnt to take it on the chin that you may need to take three steps back to be able to take 5 steps forward.
Itās a bit like parking or getting your car out of a tight spot.
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