Essential thrombocythaemia with jak2positive..

[Red78]

I need some help.. my mum has been diagnosed with ET jak2 positive, she is 65. Is there anyone out there that is jak2 positive that could give me some more clues on what survival chances, quality of life might be? A bit confused right now..

[mhos61]

Hi Red78, I'm sorry to hear about your Mum. The forum administrator is called Maz and you can ask her to send you out some booklets on MPNs.

I was diagnosed also with ET ( Jak2+) in 2016 and I am 61. I am still learning all the time about my diagnosis. I am on aspirin and hydroxycarbamide which has successfully reduced my platelets. I presume your Mother has started on aspirin/cytoreductive therapy?

The main thing with ET is about preventing blood clots, particularly after reaching the age of 60. We are told that ET in someone with no co existing health problems doesn't significantly affect life survival, if at all. The quality of life may be impacted however. In my case it is minimal, I only suffer from fatigue. Some people suffer from headaches, tingling etc., but the main symptom that nearly everyone complains of is fatigue.

The best thing I can advise you is to educate yourself as much as possible on MPNs on reputable sites such as this. It is a long process of absorbing all the information.

Good Luck

Mary x

[Red78 in reply to mhos61]

Hi mhos61, I feel better for hearing this.. Mum has only just started taking aspirin and is not sure if she wants to take hydroxyurea as it's a toxin.. I guess life or possible death is the factor into what she does..I was worried taking this chemo forever would be hharmful and make her sick and I really don't want this.. hearing what you have said makes me more hopeful..thanks

[AndyT]

Hi Red78 - I am 61 with ET, diagnosed 14 years ago and have the other genetic mutation, CALR, rather than JAK2. Don't worry too much about those mutations as they are just an indication of why our bone marrow has changed and started over producing platelets.

Life expectancy for most of us should be normal - the key is to reduce the risk of blood clots by reducing platelets to a safer level. There are various treatments available and lots of information about them on the MPN Voice website.

I have no symptoms from my ET - others do experience fatigue and other problems but it seems that each of us reacts differently and there is no common set of symptoms that affect all of us and our quality of life.

It's important that your Mum sees a specialist who understands ET and how to manage it - if you're in the UK you can ask for a second opinion and/or to be referred to an MPN specialist, as not all haematologists are familiar with this fairly rare condition. I'm in the Midlands and see the team at Leicester Royal Infirmary.

Good luck

Andy

[Red78 in reply to AndyT]

Thanks Andy, we are in NZ but mum was working in the UK when the Dr thought something suspicious with the platelet count and she has had more testing g done back here at home. We have a meeting this week with the haemotologists to find out more and ask questions..I have 2 family members that had/have leukemia, so.I'm hoping it doesn't develop to something bigger.. it just seems so.confusing as to what it is.. thanks for your reply..

[Aime]

Hi Red78, the others have given you good advice about your mums condition. If you also go onto the MPN Voice website you will get a lot of trustworthy information there. This site is monitored well too and Maz, as Mary has said will send you out information.

Keep in touch as our relatives have to cope with our conditions too - as you are coping with your mum having ET.

There are a lot of people on this forum who have had their condition for many years and I think as long as they are monitored, which your mum will be now, we can expect to have a next to normal life expectancy.

Hope this helps. If you are in the UK, it will be really helpful for both you and your mum to attend one of the forums which Maz and her team organise every year up and down the country. They are free to attend and full of information and you'll meet other relatives and your mum will meet other sufferers.

Kindest regards Aime xx😺😺

[Mazcd Partner MPNVoice]

Hello Red78, welcome to our forum, you are in the right place for help and advice, as suggested I would advise you and your mum to read as much as you can on our website mpnvoice.org.uk, all the information on there has been written by leading haematologists, specialist haematology nurses and input from patients. You can watch videos of haematologists and patients talking about MPNs, medications etc, there are also some really interesting and inspiring 'real stories' from patients, so have a look. And as Aime said, I can send you information booklets, which you can also read and download from our website. It can be a very scary and confusing time when you are first diagnosed, and not just for the person who has the MPN, but their family and friends as well, another good piece of advice from Aime is that you try and come along to one of our patients' forums, I am in the process of booking them at the moment, we hold forums around the country during the year, I will post details on our website and on this forum as well.

It might also help you and your mum to have a buddy to talk to, a buddy is someone who has the same MPN and is taking the same medication, so they can give help and advice from the perspective of someone who really does understand what it is like to live with a MPN.

With regards to the life expectancy for someone with ET, I realize that you are at the moment extremely worried about this, in general patients with ET without severe clotting or bleeding complications have an excellent chance of living out a near-normal life span if properly monitored and treated as necessary.

Please email me at [e-mail] if you would like any booklets or information on having a buddy.

Best wishes, Maz

[Superwoman]

Hi Red78' I have ET JAK 2 positive was diagnosed four years ago now at the age of sixty three, up until I was told that I had ET I had suffered with bad Heath for many years, and nobody could tell me what was wrong with me until the JAK 2 test was done, and for me although traumatic at the time I was relieved to know that there WAS SOMETHING wrong with me hence all the illness over the years.

I have always taken enteric aspirin since my forties, due to a little heart problem which was sorted, think that was all part and parcel of my ET which had not been diagnosed then, also take Hydroxycarbamide daily and two Sat and Sun, numerous other tablets and so far so good.

As for them being toxic, yes they are but they do the job, I was really worried as I do not tolerate many tablets, but so far no problems what so ever, and they are after all a lot milder than some drugs, and bloods have been near normal and my Haemotologist is very pleased with me.

Make sure your mum drinks at least two litres of water a day, eats healthy, i.e. Plenty of fresh fruit and vegetables, also taking and doing exercise helps immensely with your well being, and try to get a good nights sleep.

Life is for living, and in a way it made me look after my body, and I intend to be around for many more years to come, and if anything changes along the way so be it I will face it full on I have grandchildren so they keep me on my toes, so yes I do get some fatigue but it is minimal.

Sorry this is so long winded but you have found us rare bunch of people on MPN Voice we are here for each other, even though some are spread all over the world, so point your mum our way as we are all here for one another, do get in touch with Maz she also has ET and can send you booklets regarding an MPN she has so many contacts who are always there to give good advice. One other thing try to avoid googling her condition as this can be very frightening, as far as I am concerned I will go on to live a normal life span god willing, when I was told about MPN voice by Chemo nurse I have never looked back, it is the best place to be.

So Red78 point your mum towards us on this forum she is not alone.

Kind regards

Jean 😀

[mhos61]

Hi again Red78, I too didn't want to commence with hydroxyurea for the exact same reasons as your Mum. Also my platelets were quite low (500), so I was convinced the haematologist would only put me on aspirin.....not so! In the UK if your aged 60 or over you're strongly advised to begin cytoreductive therapy. There is a lady (lindyloo) from New Zealand who contributes on this forum and she has mentioned in New Zealand the age is 65.

At my initial consultation with the haematologist she explained to me about the importance of cytoreductive therapy in preventing blood clots - but also pointed out the potential and sometimes severe disability that can arise from strokes. For me, that was enough to agree to commence with the hydroxyurea. I have been on this drug for nearly a year now and have had no adverse side effects. I feel a lot safer taking it than not taking it.

Good Luck and best wishes to your Mum

Mary x

[Red78]

Thank you everyone for all your replies.. It's nice to know there are others out there with the same condition.. I have shown my mum and she feels so much better and I will get her on here so she can have the support..