I am new to this so please bear with me. I have been given the news that I have both PV and ET. I feel like I am in a box and I can't get out, scared and alone, may sound dramatic but the feeling is horrible. I am 43yrs old. I have the most awful dreams. I don't think it helped that my nurse said my prognosis isn't good this week but then I read that people have been living with one form or the other for years. Has anyone else got both ? I don't know where to turn.
Both PV and ET at 43 yrs: I am new to this so... - MPN Voice
Hello Karen and welcome to our forum, you have come to the right place. Have you registered with MPD Voice yet, if you haven't please email me at email@example.com and I can then register you so that you receive news on forums, fundraising, drug trials etc. It doesn't sound at all dramatic, I can completely understand how you feel, as will others on this forum. I would encourage you to read the information we have on our website, it is very helpful and might help you to understand more about ET and PV, please also feel free to ask any questions, myself and the other lovely people on this forum will do our best to answer them for you. I would also encourage you to think about having a buddy, I can send you a form to request one, a buddy is someone who has the same MPD as you and can offer help and support from the perspective of someone who actually has the condition. Kind regards, Maz
Hi Maz. Yes I am registered and I have the buddy form you sent on the 21st. I will get it sent back soon. Thank you
Hi Karen, you are not alone , I'm 44 and have E.t ,
I was diagnosed eight years ago and was very scared , the more I learnt , the more i accepted and the better I felt about my condition.I've been on hydroxycarbamide since February and I feel very positive , things are better, I've learnt to live with it and carry on with my life . All the best to u and good luck .
Hi Jase. Thank you for the response. I am also jak2 positive. I really am at my wits end and suffering terrible anxiety and tearful as though my life is going to end tomorrow as that's how my nurse made me feel. Hopefully soon I'll be in a more positive mind like yourself
Hi Karen - It's really hard to cope with your diagnosis when you get it and it sounds like your nurse hasn't reassured you and I don't know what your Haematologist said to you. I became really depressed when I was diagnosed nearly 8 yrs since but this was partly due to a lack of communication, the shock of it hitting me, my fear of needles, and having to give up my job which was very physical. .
BUT. . let me say this to you please don't give up coz you're not beat yet and if I could turn the clock back I wouldn't have stressed as much as I did resulting in me nearly going off me rocker. . It really knocked the stuffing out of me as I didn't know if I was going to die and I felt I was coping alone with it as my world imploded. My wife was very supportive but I didn't 'let her in' most of the time.
I started taking my tabs and after a while my counts stabilised and as time passed I realised I should try to carry on living my life as best I could and though Ive had to make many adjustments along the way I've done ok and I live it large whenever I can.
I only wish I could reassure you to such an extent that it would save you some of the heartache that I and probably many other forum members endured post diagnosis. . I hope your buddy helps and ask for reassurance from your Haematologist re treatment etc. Good Luck. JR
Thank you so much for your response. I have shut myself away and my nurse was not reassuring at all. I was under a locum at my local hospital in Essex who is a researcher of MPN from Birmingham Hospital he said and has since gone back there and didn't tell me anything but handed me a booklet to read then see his replacement and her nurse made me feel I will be dead in months, I went to my doctor who has no records from the hospital about what's been going on and has had to write to them to find out what's happened and so I feel utterly cracked up inside and in the meantime she has put me on anxiety pills as I have not slept for days. I now have an appointment with Proffessor Harrison next month at Guys, hopefully I will be calmed down. I don't have a buddy yet but this forum has been informing me of things i didn't even know and everyone is great and supportive which will help.
Hi Karen, you could not be seeing a more brilliant, caring or knowledgeable person with so much experience too, than Professor Harrison. Now you have an appointment with her, you can relax and sleep well...because you will be in the very best hands. Be encouraged. Tinkerbell (have ET, am Jak 2 pos, by the way and doing well just on aspirin)
Hi Karen. I know exactly how you feel. I am 39, diagnosed 2 years ago with ET and also JAK 2 positive. I was handed a booklet by my consultant and told that he had no idea what my life expectancy was and if I was between 50-70 it would be 15 years! I definitely felt like I was in a black hole in the beginning, so much so that I was sent for counselling by my GP.
I am in Essex too so not sure if it may be possible to meet up ?
I changed my consultant and now travel up to London to see Professor Harrison too. She is fab and very caring so you will be in great hands!
Hiya, I too have "both PV and ET" but as I understand it what they mean is that there are quite a lot of us who have intermediate forms of myeloproiferation disorders between the 3 "pure" diagnoses. The docs haven't quite worked out yet how they fit together and change over time. Good luck
Hi Karen, I have PV Jak2 positive. Diagnosed 5 years ago. I`m so sorry to hear that you have been left so much in the dark by your Drs, and although I haven`t been treated by Professor Harrison I know she is the acknowledged expert in this field so I`m sure that once you have seen her you`ll feel much more positive. I can`t say anything about ET as I don`t have it but as regards PV, current thinking is that it doesn`t impact on life expectancy much, if at all. Those of us with PV will die with it, not of it!
All the best
Hi Karen, like you I have both PV and ET, I am Jak2 positive and was also diagnosed at the age of 43. I am now 45, so I have had the condition for 2 years. in fact, like a lot of folk, it took a long time for me to be diagnosed, so I have probably had the disease since 2007 and I expect to be around for a while yet. It is frightening and, in fact, I still haven't fully got to grip with it after two years. The stats suggest that we're very much in the minority, having contracted this cancer under the age of 60 (I asked Maz some time ago to put a poll on this site to find out the age distribution of members). The reason I mention this is that prognosis for under 50s is different than for over 60's and yet the statistics on survival that are usually waved around are for that older group. I found a study a while back for under 50s and almost two thirds of people were still around after 20 years. But remember that all stats relate to populations, not individuals. I hope that is some consolation for you.What you are going through is normal. Give it some time, go at your own pace and expect to have ups and downs. Adjusting to the news takes time. Best wishes S
Hi Karen, I am 45 and have had ET for 15 years, I remember the consultation when I was told I had blood cancer as if it was yesterday, and felt very much as you have described. At one of the London forums it was suggested that it takes on average 2 years to come to terms with the condition,
I went into denial and it took me nearer 10years to accept my limitations and ET, I am under the care of Guys and Clair and all the professionals are fantastic and understanding, I am sure you will feel better once you have been. You life is not over it has just taken a change of direction. Good luck, ourlife
Hi there. Sorry to hear you are feeling so worried. I have ET and am jak2 pos as well. I think it is everyone's lack of knowledge that worries us so much. I have been given little information and have had to find most of it myself. This forum is a great start and has been fantastic for me as I have felt for the past few years that there is no one else that understands. There are plenty of people going through the same thing and I hope it helps to know you are not alone.
it does not sound like you have had the best of care around your diagnosis, i myself have had comments from nurses that were not helpful, im sure you will be much more reassured once you see Prof Harrison. The conditions are rare, many gps have never seen anyone with pv,et or mf so you will be much better off when getting your information in london. Good luck
Thank you Paul. At the moment I just feel the best way is to deal with it is just stay in bed and wait :-(. My GP didn't know anything about it or had any kind of records from the hospital either to say I had been attending.
I'm gobsamacked at the level of 'care' you have received and the lack of communication between the hospital and your GP.
I have also recently been diagnosed with ET and some other illnesses. I'm still coming to terms with it but learning that life goes on and worrying improves nothing for us.
I spent a lot of time at the start consulting Dr Google, trying to analyse my own blood test results and fretting when it struck me. All this wallowing will change absolutely nothing other than giving me headaches and putting me firmly in the doldrums. In the meantime I'm missing out on the people and things I love.
It's a blow but you have to make the most of everything while you can. No one knows what is in front of them - cliche, but true! I hope you can do something today that brings you joy and helps you find something else to focus on. For me that will be a run along the beach, a nice lunch and then a good book.
Best foot forward and best wishes to you.
I would also like to say that going to Guys and seeing Prof Harrison and the whole team there will make a massive difference - it definately has for me. I transferred there from another hospital in London after hearing on here about the care and expertise on offer. From the fact that the lovely lady on reception remembers your name, to having bloods done that don't leave your arm bruised for days to the absolutely brilliant help and care given by Yvonne - who is an absolute star - and the consultants you are made to feel so much 'better' every time you visit (even if you are not feeling good at the time).
So don't despair too much: it is a tough thing to get your head round at first but apart from getting some sound medical advice from experts like Prof Harrison it is as equally important reading posts on here as the advice and support from fellow MPNers is just as valuable - it sure does make you feel a whole lot better knowing that there are people out there that really understand.
All the best,
Hi Karen, I have only got PV but can I just say that you are not alone, in a box and everyone on this forum will help you. When you go to medical appointments, write down your questions and insist on getting answers. I was just diagnosed in 2012 so relative newbie myself. I have found this forum a godsend and made some good friends because of it!! Everyone is lovely and you will get heaps of support as you will have seen already from the number of replies you have received. If you contact Maz at MPD Voice you can ask for a buddy who will support you also. I haven't read all the replies you have received so apologies if someone has suggested this already. In a hurry to go to my exercise class. Thinking of you, remember you are not alone! Best wishes Aime
Hi Karen, I am so sorry you are having a difficult time right now, many of us have been there but it does get better, honest. I am ET jak 2 pos and have been told It will prob morph into PV. My symptons certainly suggest this. To feel better I took control of my situation, I moved consultants, to Prof Harrison, she is great, got copies of blood results and researched. For me this helped. Good luck, take care and you are welcome to inbox me. Diana x
Thank you Diana x
Hi karen , I have ET now slowly changing to PV and I am now nearly 70 . I stared with ET at 42 in 1986 and have managed a fairly full and fun life . I did retire from work early as I was struggling ti do an 8 hour day. When I see people with full blown cancer I realize how lucky I am all the best Town crier from the south of France in my caravan