Are there many people withET?

[Kizzy03]

I've just not long been diagnosed with ET and the hospital have informed me it very rare to have ET I went to my New GP today and she smiled and said " oh no it's not that rare we have a few patients with it here!! So do lots of people get it ? That's my question? She also didn't seem to concerned because I was low risk.

[cannonfire]

I'm ET also. Diagnosed about 9 months ago. I'm also jakd up and mutated as well. JAG 2 positive I mean. I'm finding it is not so rare. Lots of us special folks.

One other thing

MERRY CHRISTMAS FROM TEXAS.

HUGS TO YOU ALL

[cannonfire in reply to cannonfire]

Jak2 not jag

[Polly-PV in reply to cannonfire]

Like that, Cannonfire, 'us special folks'..... makes me feel a little out of the ordinary!!! Happy Xmas to you & yours across the pond, much love Poll X

[mol56]

I have E.T. jak negative but am Calr positive. I was diagnosed 10 years ago.

It is described as a rare chronic form of blood cancer now but when I was first diagnosed, it was known as an uncommon blood disorder.

The JAK gene mutation is a recent discovery and even newer is the Calr gene mutation. The MPN voice is an excellent source of information.

[Kizzy03 in reply to mol56]

Thanks Mol56 X

[Polly-PV in reply to Kizzy03]

Spot on Mol, love Poll x

[Paul42]

Hey

It is quite rare yes, Maz might know better but i think the new patient rate is something like 2 in 100,000 every year, thats people with any form of MPN, ET/PV/MF..I think. Its certainly very low numbers.

Saying that i have PV and my Sister has ET so not that rare in my family.

Hopefully as your low risk its just a case of monitoring you now and then to keep an eye on it. My sis has ET and has had for 12 years and only gets checked once a year.

Regards

Paul

[Kizzy03 in reply to Paul42]

Thank you Paul X

[rubyrubyruby]

It's not that common so is important you are treated by someone who knows what they are talking about! Don't be afraid to ask to be referred to someone with my experience in MPN's as you need to be confident that your consultant knows about the disorder.

[Mazcd Partner MPNVoice]

Hello Kizzy, welcome to our forum. Although MPNs, which are ET, MF and PV are considered rare, with between 1.5 and 3 cases per 100,000 diagnosed each year, there are quite a lot of us around, not just here in the UK but around the world and all of varying ages and having varying symptoms, as you can see we have people on this forum from all over the place. It is not unusual for you to be in the low risk category, many people with MPNs are, and many people with ET don't need treatment for many years, other than aspirin, and to have regular monitoring and blood tests. We have a lot of very useful information on our website and if you like I can send you some of our information leaflets, just email me with your postal address, [e-mail]. I would also suggest that if you can next year that you come along to one of our patient forums, these are a great place to not only hear the latest news about MPNs and research, but more importantly to meet other people with MPNs. Best wishes, Maz

[Kizzy03 in reply to Mazcd]

Thank you so much Maz other than my last GP who has just left the practice before I got this diagnosis (

[Kizzy03 in reply to Kizzy03]

Sorry Maz got cut off!! Before I finished typing!

She was lovely and said I should always come in and take things seriously she called me, and was very helpful.

I was never at the doctor and I've been made to feel with this new doctor I was silly going today asking about checking things like my cholesterol and blood pressure as I'd never ever had it taken and she said blood pressure was over a year ago!! She said I'm fine just make an appointment with the nurse, I'm low risk and it's not really that unusual ET she has lots of others with it in the practice!!

But thank you for all your support on here I feel you guys actually listen. Kizzy X

P.s. I'll email my address when I Finnish work later thank you again X

[Superwoman]

Hi Kizzy, I have ET JAK 2 pos, had it for about two and a half years, at my surgery It is very hard to make them understand just what it is, especially when I have to see a doc when I am feeling unwell and ask could it be related to the ET, or the Hydroxy, that I take, they look at me with blank faces then say, do not think so and then just palm me off with yet something else to take its very frustrating, if it was not for the wonderful people on this forum I would feel very alone. Like you I do not know of anyone else in my area of Bromley that has an MPN, so when I have my hospital visits I try to find out, only found one other person but she had CLL and is wait and see, just sees the Haemotologist every few months which I must say are very good at hour local hospital.

Anyway we are a rare breed but at least we have each other on this forum.

So Merry Christmas and a very happy New Year.

[Kizzy03 in reply to Superwoman]

Thank you so much yes your right we are rare and I've just not had a good experience with GPs!! KizzyElliot x

[Hidden]

Hi kizzy03,

I am the same as Mol56. I was diagnosed in August this very with ET. With CALR mutation. I was told this was a rare disease, 2 in 100,000 as was mentioned in one other reply. That would calulate to about 60 peeps in the whole of NZ. But my thought would be, unless you had a ramdom blood test to then find you had elevated platelet count, you may have the disease and not ever know!!! There could be a lot more people undiagnosed?? We might be the lucky ones that can be treated at least, with good old asprin. That's now my physiology anyway. I have no physical symptoms, so I am just getting on with my life. I don't see my haematoligist for a year and blood test 6 monthly. Lyn

[lizzziep]

Hi, I have ET, I was diagnosed a few years ago, I've been on hydroxy for over 2 years now, 16 x 500 mg per week, plus daily aspirin. I was given hardly any information from the hospital, and have never met anyone else with it! I have found this forum very reassuring and there's always someone who can answer any questions you have.

My GP wasn't very knowledgeable about ET, he has just left the practice, I am seeing the locum this afternoon for the results of an ultrasound scan on my spleen, whether he knows anything about ET I have yet to find out!

We are a rare breed apparently! So welcome to the Rare Breeds Club!

Best Wishes

Lizzie

[Kizzy03 in reply to lizzziep]

Hi Lizzie it all sounds so familiar!!! Let me know how you get on with your spleen results and the new GP. I got told my results of the spleen scan by the Guy at the time and he could not believe how small it was!!!? I must ask about this when I go back in March. It all seems so long till you ever see anyone but I have been given the number of a very caring specialist nurse at the Hospital and this forum is so good too. Take care and Merry Christmas when it comes. Kizzy X

[lizzziep in reply to Kizzy03]

The new locum was a very young lady, who had no knowledge of ET . She just read me the results letter from the hospital which said everything was normal - spleen, liver, kidneys etc, and bloods were nearly normal (platelets were up slightly that day). So I am no wiser about where the pain comes from, but at least a bit more reassured that there is nothing "nasty" lurking in that area! Others have posted on this forum that they too get a pain under the left ribs which remains a mystery. I don't see the haematologist for another 9 weeks so I'll have to see if I still have the pain then, I mentioned it last time, but they weren't interested!!

Anyway have a lovely Christmas and a Happy and Healthy New Year.

Lizzie X

[Lucycourt]

I have been diagnosed with ET for the last 7 years . So fortunate to be in the care of the supportive unit at Western General Hosp Edinburgh since leaving London 2 years ago .I visit hosp every 4 months and take 17 x 500mg a week .Aches and pains/ mouth blisters /day and night sweats but hey feel so lucky to be alive and active at aged 73 ! Wish all Happy New Year

[Kizzy03 in reply to Lucycourt]

Hi Lucy it is lovely to know someone who is also attending the Western General. I've to go back again on the 2nd of March. I think they are lovely there. Minot so sure my own GP knows what I've got as she said there are a lot of people with this same as I have !!? So I wonder how many people there are in Edinburgh!!?