New friend

[Helena303]

My name is Helena I was diagnosed with Jack-2 et in October 2018.

[Angeltwin]

Hi Helena welcome to this lovely group I have ET calour I am on aspirin and hydro I I am 52 I was diagnosed 2 years ago I find this group very helpfull as there is always someone the same as your self waiting to give you there advise if needed and I myself think it’s best to talk to people who really understand as not many people do with it being so rare feel free to ask any questions and best wishes x

[Deefen]

I was also diagnosed with ET JAK2 positive in Oct 2018. Was quite a shock! I’m only on aspirin and hope to stay that way.

[socrates_8]

Hi Helena...

Welcome to rather exclusive little club. You'll find all the help you will most likely need here...

My name is Steve, I am Post ET/MF, CALR Type2, w/ ASXL1 mutation.

Since my diagnosis, (May 2016), I went through the usual roller-coaster of first being overwhelmed, then being quite depressed, to now being actively involved in taking back my life... Yes, it is quite possible...

Through exercise, diet, (intermittent fasting), and also cycling ever greater distances... I am slowly beginning to feel stronger within myself, and I have also already achieved a significant molecular reversal in my bone marrow scarring, (through those efforts), in my view...

My doctors would possibly disagree, and say it was my medication achieving these results. However, I am of another opinion entirely...

We MPN patients must be our own best advocates, and that is not always so easy...

In any event, very best wishes, and don't be shy here on the Forum, if you have questions you want answered... ask away Helena...

Best

Steve

(Sydney)

[redumbrella]

Hi Helena, welcome to our fabulous forum, I was diagnosed with PV Jakki 2 negative 13 years ago. I joined this forum last year and have found it to be welcoming and informative.

Garry

[Mazcd Partner MPNVoice]

hello Helena, welcome to our forum. It can be quite daunting when you are first diagnosed, trying to find out all you can about your ET and adjusting to it all. I would suggest that you read as much as you can on our website mpnvoice.org.uk, you will find lots of very useful and practical inforamtion on there which hopefully will help you. Kind regards, Maz

[Lemon123]

Hi Helena

Welcome to this helpful and friendly forum. I was diagnosed with ET JAK2+ last May. After the initial shock that we all feel after hearing the word cancer, I've lost a few pounds, try to eat healthily (although I don't claim to do that all the time!) and walk for my exercise. I'm 63 this year; it seems I've had ET for over 15 years, but like many, it was only picked up in a routine blood test last year. So here's to being as positive as we can be, I certainly find this forum a help with that I'm currently only on an aspirin a day, and I'm praying it stays that way. As Maz says the mpnvoice.org/uk website is a great place for useful information.

Best wishes

Lemon 123

[Wilma66]

Hi Helena, I was diagnosed 2014 with ET and Jak2 mutantion. I'm taking aspirin and Hydrea. My blood numbers run different every three months. I try to enjoy my life and look forward to each day. I'm trying to have a good outlook on this disease. I am the only child, in a family of fourteen has this disease. As far as I know. I've never even heard of this until I was diagnosed. I pray you are truly blessed and do really well.

[Helena303]

Same here they say I may have had this since nov 2013. But just recently diagnosed. I’m being positive like you. I had never heard of it either. Sure know now though and coming to terms with it slowly.

[Tico]

Hi,Helena,did you post a reply to me regarding blue digits yesterday? It appears theirs a problem with my notifications software and for some reason i can only read the first part of your post,it seems to be a problem which i've encountered regarding the toe nails. Please do not think i was being rude in not replying to you but i was hoping you would message back,i i would be pleased if you could message me with the problem again regarding the previous post,thank you.tina.x🤗

[Helena303 in reply to Tico]

Hi Tico, I have not long been diagnosed.

But for over 3 years I did notice my fingers would bruise easily. Sometimes painful. I couldn’t understand why this was happening. A few of my toe nails bruised then nails fell off. But lucky enough they grew back. My nails have are thinner on my hands. Before diagnosed with ET I had unexplained bruises under my breast bone. Still not completely faded. I wonder if it was the disease. I bruise easily and even after a blood test I can bruise especially if the do it a few times as they can’t find a good vein. I realised something was going on with my blood system even then.

[Tico in reply to Helena303]

The same here,helena,regarding nails,i lost my nails on my 2 little toes on either feet,grew back but hardly worth it, very brittle, good job i'm not vain,lol. I think a lot of us have the problem with bruising. The problem with veins i can relate to,feel like a dart board! I'm seeing the vampires next week i'm not looking forward to it. Atb,tina.x🤗

[Mackydee123]

Hi Helena and welcome!

Diagnosed 2 years ago with ET J2+. Currently on Aspirin and Peginterferon, managing my platelets nicely.

Still get the odd bout of fatigue and migraines are a new fun pastime but I’m fit and able and not letting it get in the way.

I work 2 jobs and am in the final months of my law degree (gonna sleep for a month when I’m done) so there’s proof that with the right attitude, the right advice, the right meds and a good dose of support from this forum you can climb mountains....or just carry on as normal 😁

If you need anything, don’t be afraid to ask!

Best wishes

Kerry x

[socrates_8]

Hey Helena...

Yes, I guess it is 'Crap' as you say... However, I think that description might also apply to all ages...

I am based in Sydney, Australia of course. However, just recently I met the mother of a beautiful now Five (5) yo, who was diagnosed w/ ET at age 1.

Stephanie, also has Von Willebrand's Disease VDW, (which is a genetic disorder caused by missing or defective Von Willebrand factor (VWF), a clotting protein. VWF binds factor VIII, a key clotting protein, and platelets in blood vessel walls, which help form a platelet plug during the clotting process).

Stephanie's mum started a small registered charity over here called the 'Ruby Red Foundation' (rubyred.org.au/), and I am hoping that together we might work for much greater awareness, research into, and ultimately better treatment regimes... and hopefully someday a cure! For ALL MPN afflicted peoples...

Little Stephanie has been taking HU now for the past three (3-4) years...

Anyways, as long as we are all pulling together... we will beat this thing, I am certain!

Best wishes

Steve

(Sydney)