Hi. I have joined this forum to find out more about ET. My wife was diagnosed with this recently at the age of 29. We have three young children so we are very worried and scared. She's been reading about it online. I found this site and it looked like a really helpful site. So if you have any information you could share, I will be very grateful.
Many thanks
Saj
Hi Saj, the best thing you have done for your wife so far is to have found this site. Both of you will be supported well here.
The administrator for the site is called Maz and if you require any booklets on ET she will send them out to you. I can understand your fears, as your wife is so young - but there are many young people on this site with an MPN who manage to get on with their lives. Treatment in the first instance is to prevent blood clots, so I presume your wife has been prescribed aspirin? I also have ET and am on aspirin and because of my age (61) which puts me in the high risk category I am also on Hydroxy.
How did your wife find out she had ET and do you know if she is JAK2 positive? I only found out through a random blood test last year. I am sure you will have many more responses which will help alleviate any anxieties as it did for me.
Mary.
Hi Mary,
I have spoken to Maz. She has been in touch and will be sending information to us by post. Yes my wife has been prescribed Aspirin. My wife has been getting severe headaches and joint pains a few months ago and the GP had done a blood test. It was confirmed by the Haemotologist last week that she has ET and also JAK2 positive. They have also booked my wife in for a bone marrow aspiration in two weeks time. So initial thoughts and reactions were really scary but reading up on the site has helped calm our anxieties.
Sounds like you're 'on the ball' Saj. I also had increased joint pain leading up to the diagnosis. My main symptom is annoying fatigue.
Best Wishes
Mary
Hi Saj,
Welcome, and its a lot to take in. I was diagnosed at the age of 42 with PV, I am also JAK2 positive. My sister also has ET she was diagnosed at a similar age.
My tips would be....
1. try not to read google too much, some good information on there but a lot of scary information too which is hard to understand sometimes when its all new.
2.People will have lots of tips when it comes to nutrition and diet, my main one would be keep very well hydrated....drink plenty of water. This is especially useful for ET and PV patients as it keeps the blood thin.
3.Don't be afraid to ask ANY questions you want or talk about it with people.
4.Check if you have critical illness cover..this usually covers these conditions.
All the best
Paul
Thanks Paul, appreciate the tips and will pass them on to my wife.
Totally agree with you about Google as she has read some really scary information. Hopefully once it has sunk in ( as she was only told last week) she can join the site herself as I think It would really benefit her.
We do have critical illness cover as this was something taken out a few years ago when we bought our house so will look into that.
Kind Regards
Saj
I have had ET since 1999. Been on interferon alpha ever since plus half an aspirin daily. Initially we were worried but now don't even think about ET day to day. My children are in their 30s now and I am 63
Great news...
Hi there,
I’ve been diagnosed for a year now with ET, they want to put me on Interferon but I’m scared of how it will make me feel. How are you getting on with it? I’m 35 with a platelet count regularly over 1600 ☹️
Thanks
Lou
Hi. I was diagnosed nearly 4 years ago with ET and JAK 2, I was 37. I have 2 kids and felt exactly like your wife. I went through the first year struggling to get my head round everything. I ended up having some counselling to help me try to deal with it all, as I tended to swing between anger and sadness. Over time things do get better though. I am still only on aspirin and hope to stay just on this for as long as possible.
My best piece of advice is to find a consultant who knows about MPNs, someone who understands the condition and can be sympathetic to your concerns.
Hi Saj - welcome to you and your wife. I was diagnosed with ET in 1996. I was pregnant with my son and it was picked up in a routine blood test. I had probably had it for a few years. Thankfully, I was simply told it was a blood condition that would need monitoring. There was very little hullabaloo about it - as much less was known. So I wasn't even particularly worried or concerned. Back then there was no Google to give me all sorts of terrible scare stories. This site is excellent as is MPN voice and I have since become far more knowledgeable because of MPN voice, which I discovered about eight years ago. I am now on aspirin and hydroxyurea, which I started about 10 years ago. My son is now over 20 and I have worked full time and felt well over the entire 20 years. I recognise I am lucky, but I really wanted to reiterate that ET is very liveable with. There have been huge advances in understanding MPNs, so who knows over the next 20 years they may even have found a cure. I wish you both all the best.
Amanda
Hi, I did the Google thing when I was diagnosed nearly 6 years ago - very scary - and 99% inaccurate! I was so pleased to find this site. I've read some very inspirational and helpful posts on here. I was on aspirin at first, than Hydroxycarbamide was added, recently changed to Anagrelide.
No question is too silly to ask. (Somebody will already have asked it!)
I can only reiterate what others have said, keep hydrated, eat healthily.
Hopefully you'll have been reassured by the replies on here. I was so relieved when I read that you could live a "normal " life with ET. I've been waiting to see if I would glow in the dark after being on the drugs - nothing so far!! I do get tired sometimes - but I am in my 60's now!!
Best wishes
Lizzie
Hello Saj,
First of all please give very good wishes to your wife. Next do tell her to avoid Google until she really has information clear in her mind - that may be months. How good you found this site because we all understand her fears. I have found that apart from increasing my water intake I carry on my life exactly as I did before with the odd limitation here and there. I have MF by the way. Sounds like she has good people looking after her and more will be revealed by the BMB. Above all else be positive and enjoy those children!
Linds
Thank you to you all for your kind replies and advice.
Its nice to know that you are all there to help and support each other which is very reassuring. Will try and keep her away from Google for the next few weeks! She has a BMB booked for first week of Nov and will let you know the outcome. Fingers crossed all will be well.
Best Wishes
Saj
Hi Saj,
I was diagnosed at 32 just after the birth of my son but I too think I had it for years previously (my teens). My hematologist at the time assured me that I would live a normal life with normal life expectancy but would have to attend more hospital appointments than others. That's was fine with me. I stopped Googling and the next 4 yrs I felt better than I had in years. I started taking anagrelide and now take an aspirin daily. It's never stopped me from doing anything.
Unfortunately my ET has progressed to MF but that doesn't happen to everyone. And because your closely monitored all changes will be picked earlier if there is any.
My advice is make sure you have a good hematologist and build a good relationship with them as you will get to know them very well over the next few years.
It is a scary time but hopefully she will get reassurance from others and her doctor.
Best wishes e.
My understanding is that people with ET can expect to live a relatively normal lifespan while monitoring their blood with regular CBCs and possibly Hyroxycarbamide (Hydroxyurea, HU or Hydrea are other names for the same thing) to control platelet counts. Terms like "incurable" and "chemo drug" scare people at first. We're all different, of course, but many have lived long, happy, and productive lives with ET, with or without medication, and having been diagnosed as children.
Jerry do you know anyone who has ET and has done this without medication? I am 37 and was diagnosed 10 yrs ago and have only taken asprin as my platelets havent gone over a mil yet. I am hoping to stay this way forever but what are the chances?
Do you know anyone who has either just stayed on Asprin or no meds at all?
Lina
Hi, Lina. My problem has been very painful clotting events over the last decade, resulting in trips to the hospital several times per year, sometimes lasting for several days. My diagnosis of ET JAK2+ and Factor V Leiden, along with the prescribed 500/1000mg Hydroxycarbide and 81mg aspirin daily, has resulted in an end to those traumatic and very painful epidodes. Had I been diagnosed without substantial symptoms, I would have been reluctant to embark upon a life-long journey of daily chemo drugs. Take it a day at a time. I'd only medicate as a last resort. Good luck, Lina!
Thanks Jerry! Yep I definitely only wanna medicate as a last resort, but what would that mean? A count over a mil without a clot? A clot with a count below a mil? Its all so confusing!
We're all different, Lina, but I think it's risky living with a count over 1mil and would medicate with 81mg aspirin first with a goal of <750k. Hydroxycarbamide is working well for me with 500mg/day along with aspirin. High counts risk stroke or heart attack, as I'm sure you know. My symptoms were the repeated attacks of ischemic colitis.
Hi Jerry
I came across your post this morning and was very interested in your connection of ET diagnosis with ischemic colitis. I was diagnosed with ET Jak2 + in April and am taking Hydroxy and aspirin.
I have had bowel problems for many years ( cramping, severe pain, diarrhoea etc) but no clear diagnosis despite investigations. My haematologist has noted these problems but has not mentioned any connection with ET.
I would be interested to hear what your experience has been?
Best wishes
Val AP
Hey Saj, check this out patientpower.info/user/regi...
Saj; my sympathy to you and your wife during this trying time, it is scary and can be overwhelming . ET is a diagnosis of elimination and once that is all done it will help. I have ET Jak2 + and consider it to be the better, easier (?) of the MPNs as far as symptoms and complications. As you will read here there are many people who have lived with ET and other MPNs for years some having only taking asprin.
Hi. Thanks for response. No we haven't applied for the medical exepention yet but will apply over the next few days.
Does anyone know if this does come under critical illness?
Thanks Doug.
Hi.
Has anyone successfully claimed critical illness with Aviva for ET and JAK2?
Hi. I just noticed this comment you made re. critical illness cover and Aviva. My Partner has also recently been diagnosed with ET JAK2+ and we have CI cover also with Aviva and Zurich.
I know there are a few on this forum who have been successful in claiming. How did you get on in the end? Were you successful?
Hope your wife is doing well.
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