Recently diagnosed ET

[conno61]

Hi, my name is Ian, I'm 54 and have just been diagnosed with ET. It's all quite new and scary at the moment. I seen my haemotologist 2 days ago and he told me I'd tested positive for calr. My blood count over the past few months has been around the 910 area. On the good old aspirin daily at the moment. Any advice, tips would be very much appreciated.

[Mwalimu]

Just a word of support.... I was apprehensive at first but once I got accustomed to the idea - and read how it was different for different people - I became more confident. Not everyone has extreme side effects or even the same ones from using HU and many of us find we are able to live more or less normal lives. In my case, I am retired so that helps but I reckon I live a perfectly normal life for my age (74).

Try not to worry too much and do use the info provided my this site. Good luck!

Sallie

[conno61 in reply to Mwalimu]

Thank you.

My mcmillan nurse put me onto this site. It's good to be able to talk to people in the same boat as they obviously understand what you're going through.

[jillydabrat in reply to conno61]

Hi Connie, your response intrigued me regarding your MacMillan nurse. Were you assigned one? I, like most people on here, had to search high and low through the various, often conflicting, websites in search of information regarding this condition(s). It was only by going on the MacMillan site was I directed to this fabulous forum so I was interested when I saw your comment, best wishes, Jill

[conno61 in reply to jillydabrat]

On my last hospital visit I didn't see the doctor which I was glad about as he came across as blasé and not really interested. Instead I saw the nurse who turned out to be a haematology clinical nurse specialist as well as a mcmillan nurse. She explained more to me than the haemo doc ever has, she was great and gave me her card to phone her if I had any problems or worries. Guess I was just lucky in coming across her. Thank god I did.

[mhos61]

Hello Ian and welcome,

my name is Mary, I am 60 years old and also diagnosed with ET (jak2) approx seven weeks ago ....so it is all pretty new to me. I have had many questions answered here. It's worth taking a look through some of the posts. One thing for sure - you will definitely be supported.

How did you find out you had ET? I only found out through a random blood test. I don't have any symptoms other than fatigue.

Good Luck

Mary

[conno61 in reply to mhos61]

Hi Mary, I had a funny turn at home one Saturday morning. I eventually managed to get a doctor's appointment and he sent me for a blood test. That was how it came about. Had three more blood tests all with the same result. I was then refered to the hospital and have just this week been told I tested positive for the calr mutation. Only on aspirin at present as I'm apparently low risk although my platelets are steady at 910. He said if I was 60 or had had a clot,stroke or heart attack they would be treating me.

[mhos61 in reply to conno61]

I have been told that I am high risk because of my age, and if it wasn't for that I would be intermediate risk, and that's with a steady platelet count of only 500 before treatment. I think being jaj2+ also contributes to a higher risk status than being CalR +. Not certain on that though....its certainly a complex disorder.

Mary

[Paul42 in reply to mhos61]

Hi Mary

I havent heard that Jak2 gives you a higher risk status than Calr, maybe Maz can try and clarifiy, but i would have thought as Calr is only a recent finding in MPN's that there wouldnt be enough data around yet to help determine that.

Paul

[mhos61 in reply to Paul42]

Yes Paul, clarification would be helpful.

Since I have been diagnosed I have done endless research and this area of 'mutation status' remains unclear. I have definitely read 'somewhere' that jak2 is another indicator of risk? So maybe Maz could ask Proffessor Harrison to clarify.

Mary

[catkinspolymer]

Hi Ian, I am now 71 have had Et for 30 years and still very much enjoy life , get the blood figures normal and things should go alright.

all the best Town crier

[lizzziep]

Hi, I was diagnosed 5 or so years ago with ET. I was told when I got to 60 my counts would rise and I'd be put on HU. They were right. VERY scary! I was so glad when I found this site, and found I wasn't alone! No question is too ridiculous- there are many factors that affect those of us in this exclusive club called ET 😳.

Anyway I've been on hu for over 3 years, I've yet to grow another head or glow in the dark (although that would save on the electric!).

There are lots of people on here who have had ET for many years and are still alive and kicking.

It is scary at first but you'll soon get used to the idea of having an invisible illness (almost a super power!) Most of the time you don't know you've got it. Ok, you'll get tired, maybe night sweats - but better to be diagnosed and having treatment and being monitored than not.

Best wishes

Lizzie 😄

[Malaika]

Hi. I was diagnosed in 2001 and am still here and high risk! It is all so scary right now and I remember this time well. At that time I didn't know of support forums so just had to muddle through. You will find all here very supportive and no question is considered too silly. Have a hem you can work with and educate yourself as much as possible.

Wishing you all the very best.

[beetle]

Hello Conn61. Your Macmillan nurse did you a favour referring you to this site. It is full of wonderfully warm and well informed people who are happy to answer any questions you might have. We all know exactly what it is like to receive an MPN diagnosis and have years and years of experience between us. When I was diagnosed with ET in 1994 there was little or no info on the Internet as it was in its infancy. That is not the case now obviously but there is so much information out there now and some of it is misinformation so try not to overload! Try and stick to sites such as MPNVOICE that give out good clear and true info and as many have said Maz,our site administrator, has a hotline to some of the best information going. I was always taught that the only stupid question is the one you don't ask so feel free to ask anything here and someone is sure to be able to help. We enjoy good news too and we welcome that even if it sometimes off topic. So welcome here

Best wishes, Jan

[Mandy74]

Hello Ian

My names Mandy I've had ET for 10 years when I was diagnosed my platelets were 1900 and yes it is very scary 10 years on and I'm still learning interferon pegasys has got my platelets down to 489 but I have developed osteoarthritis and rheumatoid since being on it and crf which can be a struggle but I just try and keep my chin up and get by this site is a lifeline because there's so many people to speak to .

Wish you well

Mandy x

[conno61]

Thank you everyone for your time in replying I really appreciate it. 👍

[Jackie49]

Hi Ian

My name is Jackie and I was diagnosed Feb this year. I am ET calr positive with a count of 900 , also on asprin . I have learnt a lot of information from this site and will be going to the London forum on 11th July ... the main thing I have learnt is drink lots of water and live a healthy life style.

Best wishes

Jackie.x

[conno61 in reply to Jackie49]

Thanks Jackie. Our counts are very similar. I've seen on here there is a seminar in Llandudno in September. I live in Liverpool, so it's only about 60 miles from me. I'm more than likely going to go to that. Hope your seminar tomorrow is positive. Ian.

[Jackie49 in reply to conno61]

Hi Ian , i went to the forum meeting in London, it was worth the trip. I learnt so much more compared to my local hospital , now I know why people want to go Guy's hospital. I have also signed up for their flu vaccination study . jackie

[conno61 in reply to Jackie49]

Thanks Jackie. I'm definitely going to the one in Llandudno in September.

[swess in reply to Jackie49]

Hi Jackie and Ian

I am also diagnosed ET calr positive. Current count is 589. Not on any medication yet. Am due for next blood test in Sep 2016

Best wishes.. xoxo

[heathermc]

Hi. I'm 52 diagnosed 2 yrs now with ET. I am CALR positive. On asprin and I reacted badly to my diagnosis. However this site helps so much. Have good and bad days but things could be alot worse. Least we know. Still waiting for decision about my treatment. My platelets are 901. Just get tired alot. Am battling sciatica in both my legs so get a little fed up. I found pilates and Tai chi a good thing . Good for stress. I work full time and have long days at work. Sometimes I think because they can't see the illness it's hard to explain. Not looking forward to taking more medication. That's scary but others cope so will have to get on with it.

[mickey64]

Hi I was diagnosis at 63 last year and in looking back it all started Jan last year only and I was really diagnosed until October only by me looking at blood work from a wellness test. I am now turning 65 in three months. I am also Jak2+ my platelets range anywhere from 650 to 800. They go up and down. I was right away put on HU due to age only by my local hematologist. Stayed on it for several months, did not feel good but manageable and from the advice of many sought out a MPN expert at John Hopkins in the US. He told me to not take the HU and not to worry until my platelets got much higher, then there is more a worry of a chance of a bleed. Now since that was not the norm and he is very conservative in his thinking but he does a lot of research since he has a family member who also has ET. I stayed on the HU but then got very sick one morning in Feb and decided to stop it on the advice of the expert and my GP (not my local Hemo guy). After many months of HU my platelets only went down to 550 but I was not one of the lucky one who had no side effects. I went to the expert as I was having headaches and he said just take a full aspirin when you get the headaches, he did take lots of blood, examine me and asked me tons of questions first. My counts have gone up and down, I do get fatigue and sometimes do get headaches. So I sought out another expert but further away, he said the same thing (UGH) figured I would take two out of three. But he did say if you getting headaches you have to get the platelets down to get rid of the headaches, so he gave me Angrylide to try, I had AFIB once so I am little scared to start it, but I am going to give it a whirl. I work full time and have to until I am 66, I support a lot of people.

So going forward I went back to my local he agreed to partner with the Hopkins Dr and said that Doctor wrote the book on MPN's which I was impressed by. He said to me my only risk factor was age he agreed to try the angrylide also. Now both MPN experts said there is no magic number with age, it everything together, blood work, history, health and symptoms all together, never a mention of Jak2+. So I kept hearing that in the US on some sites almost to the point of it was written in stone so I ask both experts and they all said not conclusive evidence. I also ask Maz to ask Claire Harrison and her response is on one of my posts. She is a wonderful expert and you are lucky if there is anywhere you can get to see her.

As for me I worry all the time should I listen to the experts or not because there is so much difference between all of them, every ache and pain I get I think its doom and gloom, I do get tired and I do headaches sometimes but I can tell you for me I felt much better off meds then I did on them. I do take supplements and aspirin and Not saying I will not give the HU another go at it, but am hoping to try the Pegasy. Just want to make it to 2017 so if I could not work it would be ok. Good luck! Mickey

[swess]

Hi Ian, you may request your doctor to do a test on the blood clotting level. I get to know one of the folks, CARL+ count at 1200 but he is not taking any aspirin after the test and discovered only 30% clot. As he is also not suitable to take aspirin.