Newly diagnosed

[cannonfire]

Recently diagnosed ET JAK2. I always knew I was unusual but now I know I am jakd up and mutated. I am always looking for new information and hearing about any and all treatments. I hope I can also be a positive contributor.

[JediReject]

Welcome cannonfire . . You've landed in the right place as you can access all the latest info on and through this forum. . With the added benefit of it being a 'symptom 'checker' as there are many friends here with ET some having lived with it for a long time. There was a live MPN event recently and the video is available to watch on here, possibly someone will kindly point you to it or post a link. Look forward to your contributions. Cheers JR

[Mazcd Partner MPNVoice]

Hello Cannonfire, welcome to our forum. Maz

[lizzziep]

Hi, I have ET, JAK2 negative. I was diagnosed about 4 or 5 years ago after routine blood tests showed my platelets were high, no other symptoms, that I knew of then anyway. I thought being tired a lot and itchy skin were just "me"! I am 32, oh alright I admit it I'm 62. (Youngest sons 35 so that would have been a miracle!)

After a bone marrow biopsy I had ET confirmed, I was just on aspirin for a while, but have been on hydroxycarbamide for nearly 2 years. I take 2 x 500 mg for 5 days and 3 x 500 mg for 2 days. I've been on this dose for about 7 months.

I've found more out about ET on this forum than from the hospital. When first diagnosed I Googled it and believed everything I read about ET and hydroxy. However most of it was complete rubbish, just scaremongering.

I did get quite a few side effects at first but most settled down and I've got used to the others. I don't glow in the dark - yet! (although that would save money on the electric)

I try to eat healthily and do gentle exercise. I have severe arthritis as well and that caused more problems than the ET.

ET is classed as a blood cancer, but I just call it "my blood / bone marrow thing" - so as not to frighten the horses! Although the clue is there as I am on a chemotherapy drug!

There are several people on this forum who have had ET for years and are still alive and kicking!! It is daunting when first diagnosed, but after a while when you realise you haven't grown another head or anything you calm down a bit!

Best wishes! Lizzie

[cannonfire in reply to lizzziep]

Just another of life's annoyances.

Thanks

[YogaLover]

Welcome! I joined the community recently after my ET diagnosis and have received loads of support and information from members. I'm sure you will too.

With best wishes x

[cannonfire]

Thank you all for your replies. At first I was scared. But I am a believer and I realized that always God has my back. So I just understand that I am jak2. So I guess it makes me a little more special.

[Tinkerbell13 in reply to cannonfire]

Hi Cannonfire, you have found such a brilliant site here and will have the best support and info. Diagnosed with ET Jak+ couple years back and can remember how scary it was to start with, now seems totally normal - as, with all these friendly folk, we realise we aren't alone. Every blessing from a fellow believer Tinkerbell13

[Twinkly]

Welcome to you cannon fire ,,what an amazing name !! Hope you will join in our chats ,we learn so much from each other ,,it's a good support network ..twinkly x

[Hidden]

Good Morning Cannonfire I was diagnosed earlier this year JAK2 Positive and ET and found this forum and people so welcoming and supportive. Caz x

[lizzieET]

Hi cannonfire - welcome! like you I'm Jakd up and mutated (I'm so going to steal that phrase......) with ET and my friends don't get it, my family doesn't get it but everyone on here gets it, so you'll find lots of support and laughter and suggestions and comments. I'm on Hydrocarbamide 2 x 500mg during week then celebrate at the weekend with just one a day. And aspirin every day. I've cut sugar down to only getting it from vegetables and a sensible amount of fruit and exercise - it's had a really positive impact on any symptoms I had (tiredness, itchiness, restless sleep). It's a fabulous community and the online conference is definitely worth watching! And with ET we can always phone home...

Liz

[Hidden]

Hi cannon fire

Welcome to the club though it's not one we choose to be a member of. I too am a mutant, though prefer your idea we are special. I was diagnosed in 2012 following a portal vein thrombosis, countless blood test and a bone marrow biopsy. I have ET and am Jak 2 positive also. It was a scary time and I ffound this site so helpful, full of information, positive people and support. Initially followings course of anti clotting meds, I was just on aspirin. Later put on hydroxycarbamide, though platelet count not excessive I bit of a higher risk due to my thrombosis.

At present I take 500mg of hydroxycarbamide twice a week only. Used to take more days a week but my blood counts all well controlled on this dose and the inevitable Aspirin.

You will find lots of information and support here and will see that many people on site have been living a full and happy life despite their MPN. Cheers Lizxx

[jeanr]

Welcome to the site I'm ET but JAK negative. You will find lots of support here. I am taking hydroxy and aspirin, for 3 months now. All good wishes.

[Kathymoore]

Hi Everyone,

Just diagnosed also with Jak2 ET. I was prescribed the Hydroxyurea also, but am resistant to start it because of all the side effects I have read. I am currently just taking the low dose aspirin. I have 2 questions: has anyone had any of the serious side effects and is the fatigue a result of the meds or of the ET itself? I have had a few days that I have the energy of a slug, but when I asked my doctor about it, he said the ET does not cause fatigue.

[Hidden in reply to Kathymoore]

Hi Kathymoore

I was only diagnosed in April but even when I had a couple of weeks off the Hydroxy I still got fatigued but can't say it is because of the ET as I also have Sideroblastic Anemia - I will say though that one of my main symptoms before I was diagnosed was chronic fatigue> Love Caz x

[Hidden in reply to Kathymoore]

Hi

Taking hydroxy does seems very scary at first. I was reluctant too but as I had had a portal vein thrombosis and did not want to risk another I bit the bullet and followed the advice of my haematologist. I have been Ok on it, no serious side effects and it has had a positive impact for me. I feel much better with my platelets well controlled and less of the symptoms I had when first diagnosed (like headaches, itching etc). I also experienced fatigue.

On advice of my haematologist I take the hysdroxy in evening, so that if it does cause any tiredness I sleep through it!

By the way welcome too Kathymore, you will I am sure like I did find lots of information about ET and hydroxy etc on this site. Liz

[Aime]

Hi cannonfire, sorry for the late reply. You have come to the right place where people support you, sympathise, understand exactly how you are feeling and what you are going through. You are in amongst friends and a bunch of really great people. Kindest regards Aime x

[Hidden]

Hi Cannonfire, and welcome , im same as you ET jak 2.pos ,on the Asprin for now , go back to hospital in November possibly will then be going on the hydrocanide ( think spelling wrong ) but im 63 found out last October had all this , but hey ho theres a lot of positivity on here and at the hospitals so we all try to look on the bright side , but naturaly so we do have the down times . But theres still lots research going on into these MPDs which is good ,best wishes Holly