Diagnosed with Essential Thrombocytosis with JAK2 negative with some of my red blood cells abnormally-shaped.

[Cupcake5967]

Hello I'm new to this forum and new to this Essential Thrombocytosis arena. I first went to my doctor for a routine blood test in October 2015 the blood test came back with a high platelet count of 862,000 I was ordered to have another blood test to see if there were any discrepancies. I went to a hematologist following my 2 blood tests and I was diagnosed with essential thrombocytosis and my red blood cells were abnormally shaped as well. For now my doctor asked me take further action if they reach over 1 million since I have no symptoms at all and will then order a bone biopsy as well as put me on hydroxyurea to slow down the platelets. Went back February 5, 2016 my platelet count went down to 826,000 and I was also told that I was jak2 Negative. He also said I would be subj3ct to developing leukemic conditions later down the road in life. Not sure of what jak2 Negative means so I would appreciate if anybody has knowledge they can share this with me. Thank you in advance.

[mickey64]

Hi Cupcake glad to meet you, what part of the US are you from? I'm not sure what really matters in that Jak2+ or negative, they do a BMB to be sure of ET and then they eliminate. Your under 60, have no symptoms so your in pretty good shape. You should really see an MPN expert at least once. My local hematologist is a good blood Dr but not well up on the MPN's at all. I'm not sure what you mean about your red blood cells are abnormally shape, maybe Maz can help with that one. Glad to meet you and this is a great forum.

[lizzziep]

Hi, I was diagnosed with ET a few years ago. My bone marrow biopsy showed I had ET and was JAK 2 negative. my haematologist said being negative was a lot better than positive! As for becoming leukaemic your chances of that are more than likely extremely slim, but they have to tell you, just in case! I was very worried when first diagnosed , made worse by Googling the disease, don't believe everything you read, I have found out more about the disease, treatment and side effects via this forum than the hospital. I have been on Hydroxycarbamide for nearly 3 years now. I had a quite few side effects at first but most faded. I live a "normal" life!

My platelets are usually in the normal range now, and I usually see a specialist nurse not the consultant now, but can see him if I want to.

I feel more relaxed about the disease now, but not complacent! I try to eat healthily, I've lost a bit of weight, I try to be positive, my lfe hasn't changed much. I do get tired, and get the odd aches and pains but I'm over 60 so that's to be expected.

Anyway, welcome to the forum and best wishes for the future!

Lizzie

[mol56]

Hi. I have ET. jak neg. I was diagnosed 11 years ago after blood tests, a BMB and an ultra sound scan to check the size of my spleen. My consultant also said that being jak negative was better than being jak positive. I am 65.

I have been on Hydroxycarbamide for over 10 years now, which keeps my platelets down to a reasonable level. Not many side effects.

I, too, try to live a normal life but do have the occasional wobble. Have learnt to pace myself and there are many days when I forget about E.T.

This MPN forum is a good way to learn about ET and there is very good information about the gene JAK and also the gene CALr (which I am positive)

[Mazcd Partner MPNVoice]

Hello Cupcake, welcome to our forum. I would urge you to read as much as you can on our website mpnvoice.org.uk about ET and Hyrdroxy, this section might help you with the JAK question mpnvoice.org.uk/about-mpns/... and this with regards to the red blood cells mpnvoice.org.uk/about-mpns/..., it would be best if you ask your haematologist to explain what the abnormal shape of them means to you, and with regards to developing leukaemia in the future, it is very very rare that ET can progress into leukaemia. Best wishes, Maz

[amarylis]

Hi,

welcome to the forum. I'm sure you will get lots of positive, help, advice and encouragement from other members, as that has certainly been my experience over the past few years.

Hopefully I can just give a few words of encouragement, as someone who has been a fellow ET sufferer, for the past 20 plus years.

My ET was discovered when I was 38 years old during my pregnancy, like you my platelet level was high (particularly as during pregnancy the platelet count tends to lower considerably)!

It came to light that prior to my pregnancy I had also had high platelet counts, as shown in a previous blood test, but that it had not been picked up. So I believe that I had ET for a year or so (at least) before it was diagnosed.

You will no doubt be aware that our condition, along with the other 2 MPN's, are very rare however, in recent years huge progress has been made, with regards both treatment and the understanding of these disorders. In particular, their re-classification as blood cancers.

However, please don't let the C word alarm you - many of us - particularly those with ET - live with the condition, for many, many years. A lot of us have very few symptoms, and even when taking treatments, experience few side effects.

I have been on Hydroxycarbamide (500mg x 8 tablets over the week) for just over 10 years plus a 75 mg aspirin daily.

So far so good. I live a busy and active life - as an Assistant Year Head in a large British Comprehensive School, and have brought up a strapping 20 year old boy, mainly on my own - also for the past 10 years.

I do recognise I have been fairly fortunate, but I really do want to stress to someone who is newly diagnosed, that ET, can be very manageable, and is not necessarily as scary or debilitating as may at first sound.

This site is brilliant, and people are very willing to share their own experiences and offer advice. Although, I think everyone would agree that the best advice will ultimately come from the experts, and an MPN specialist in particular.

I have included 2 links from 2 x web-sites that most people here will have benefitted from. I discovered MPN Voice about 6 years ago, and it was from this site that I got most of my information regarding ET; Patient Power, is also amazing and both will offer you a huge wealth of information and updates about your condition.

mpnvoice.org.uk/

patientpower.info/

Hope you find both useful.

Wishing you all the best

[catkinspolymer]

Hi Cupcake , you sound very similar to me some 20 years ago . I was feeling really terrible and first started with a Heart man . He did a blood test and I too had platelets up in the 2 million and a packed cell volume of about 53 % and the blood was so viscous that the heart was protesting about pumping it. The heart man passed me onto a Haematologist who did a bone marrow biopsy and diagnosed ET . He put me on HU same as you at eventually got platelets down to 40000 or so in the normal range. I am also Jak negative which I am told is better than positive. There was some suggestion then that HU could encourage progression to full leukaemia but I think Cambridge University and Addenbookes Hospital have shown that not to be the case. Apparently and this may need checking about 5% of ET can go to leukaemia.

When I went through my medical record I have Had ET for ten years before that and the blood technician had written " basofellia MPD ? but my GP (MD) did not know what he was talking about and did nothing about it . Basofellia is where the red cell clump together.

Well I am now 71 have outlived several of my college mates who were all healthy but just keeled over and died of something healthy . I keep pretty well but do have some days when energy is abit low.

I am still on HU about 1000 mg a day and baby Aspirin and now have a vevesection about every 8 weeks were they take off a pint of blood , Medieval medicine as my haematologist reminds me . The thinking in the UK is that as long as we are monitored regularly our life expectancy should not be that different to the normal population.

Hope you find this encouraging

all the best Town Crier which is my latest job