This is my first message to the group. I was diagnosed with ET 4 months ago and now I try to understand this strange disease.
When I discovered the group a few weeks ago it was an eye opener and I have learned so much by reading all your messages, so thank you for that.
At the moment I take 11 hydrea a week. My Hemotologist is very friendly but I now realise that he really hasn't told my a lot, am I CALR pos., JAK2 neg./pos. ? The possible side effects from the medication, the future prospects. At least now I know much more from reading your mails and I will be able to ask questions.
At the moment I haven't told anybody about my disease apart from my husband and children I wouldn't want the disease to dominate my life. So I'm very grateful to have found you all 😀
Winni
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Peterwi
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Good Morning from Wisconsin in the good ol' USA! While I have Myelofibrosis, our diseases are both MPN's or Myeloproliferative Neoplasms. A good start for powerful self education is the website for the organization run by Andrew Schorr. The Patient Power Network can be found at patient power.info
Also look up your ET on YouTube. Many of the doctors who are interviewed on Patient Power have their videos on YouTube as well!
Hi winni , welcome to the site ,,ask the questions you are afraid to speak ..you will be reassured by others who have passed that early stage ,,knowledge is strength ,not afraid means no longer tied .. Broken sleep ,, Or bad dreams ,, talk it out it melts away ,, Love twinkly. X
Thank you for your encouragement. I felt a bit lonely when i was diagnosed at first, but I feel much better now reading all the helpful mails, Winni x
Hi Winni
I'm very newly diagnosed too so am in similar situation that my hemotologist has told me very little . I too found this site which is si friendly and people care so much and take the time to reply . Like you I shall take as much information as possible from here and hopefully it will be clearer . I've not been a member long but the spirit of people on here is uplifting and twinkly is right , we all need to talk sometimes and this is such a nice place to do it TC
Nice to hear from somebody who is in the same situation. I think my haematologist didn't tell me much because he didn't want to worry me, but the result was the opposite, I was very worried when I left him 😱, Winni x
Hi Winnii
Welcome to the club! Though as I always say it's not one we would choose to be a member of. I to have ET, diagnosed in 2012. It was very scary at first and although I have a nice haematologist who explained a lot, I have still learnt lots more from this site. Equally important I have found people who know what it's like and understand. Always ready with an ear to listen and help and that is invaluable!
I am on hydroxy too, though a reduced dose from the original now. I work full time and lead a pretty normal life. Though one persons normal is another's crazy! No seriously you are right it does not need to dominate your life.
We are all here for you if you need to talk. Lizx
Hi Winni
Quick PS| if you haven't already look at MPN website, lots of useful infor and leaflets on there about ET and MPN's generally.
Hi Winni welcome to this site. You will find so much help, support, information and friendship here, it is amazing. Fellow sufferers understand exactly what you are going through and Maz and Prof Harrison can offer medical info and advice.
We all have times we need support and you will get it here. Best wishes Aime x😺
Hello and welcome. Little I can add to what others have said.
I was diagnosed with ET earlier this year and have always received wise words from everyone here.
I am still coming to terms with the disease and the treatment and you will see me on here from time to time. If you think I can help in any way just get in touch xx
I haven't got to terms with the disease either, I suppose it takes a bit longer. One positive thing is that after taking Hydrea my headaches has stopped, and I'm less tired 😀
Hi Winni, I have Et JAK 2 pos two years now, this site is the most amazing place to be, they are all wonderful people, they have helped me throughout some very dark days with there wit and knowledge, so keep tuned to us all and life will be a better place, we may be a rare breed but we are unique.
Life if for living, we are not ready to give up on it yet.
I completely agree with you that it is important not to give up and as I said earlier it make you take your life up to consideration. There are always something you can change to make it better.
Hi I have ET Jak2 positive and have been a member of this site since May. I have learned more from these lovely people in that time than I did since diagnosis 3 years ago. You will always have friends here. Keep smiling.
I've had ET for a few years and have been on the hydroxy for 2 years. It is VERY scary at first, but I have to say my life hasn't changed that much! Except for checking this site out most days. I have got most of my info from this site and found it has put my mind at ease a lot. I don't tell anyone it's a cancer, just call it a blood/bone marrow thing. That way I have more control over what people think of it! Just think of it as being in a rather exclusive club - not too many benefits to it, but the subscription is free!
i didn't really have any symptoms, my ET was found via a random blood test. Although since then I have been told the tingling in my lips and tiredness was probably due to the ET, I still get tired, but that could be an age thing as well as the hydroxy, and occasionally I get the lip tingling! Hey ho - things could be worse!
Hello Winni, welcome to our forum. As you can see we are a very friendly and supportive bunch of people and you have had lots of lovely replies to your post. I would urge you to read the information we have on our website mpdvoice.org.uk, where you will find lots of useful information on all aspects of living with a MPN. If you would like me to send you any of our information booklets you can email me your postal address maz.cd@mpnvoice.org.uk, I can also send you information on having a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication so can help and support you from the perspective of someone who really does understand what you are feeling. With regards to being told your JAK and CALR status, ask your haematologist at your next appointment what the results are of each test as you would like to know. It is a good idea to write down any questions you have and take them with you and explain to your haematologist that you would like to ask certain questions, this can help the haematologist as much as you, and if there isn't enough time to answer them all they may take your questions and give you the replies either by letter/email/phone call or at your next appointment. Best wishes, Maz
Thank you it is a great forum, I'm overwhelmed with all the encouraging mails I have received and as I said earlier I have already learned a lot.
I will have a look at the website you recommended and it would be great if you would send me some booklets regarding ET, I will mail you my address.
I'm seeing my haematologist in 3 weeks and I will follow your advice concerning finding out my JAK or CALR status and I now know which questions to ask when I see him,
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