MPN Voice
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Newbie, Hello!

Hello I was diagnosed on Tuesday of this week, I am Jak2+ but I have to have a BMB as the dr isn't sure if it's just PV or borderline MF.

I was feeling a little lost and very alone especially with all the new words and abbreviations, that I'd heard at the hospital, I couldn't remember half of what they said on Tuesday, I went completely blank.

But I sat up all night on Tuesday and read MPNvoice and then joined this group.

I can't tell you what a light you have all been.

I just wanted to say thank you for being here, at what appears to be a new chapter in my life book!

Jacqui 🤗

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Hi jacqx17 and welcome to the forum. You have definitely done the right thing in joining this forum. You will not feel so alone now - just knowing that there is always someone to share any fears that you may have, or ask questions is so reassuring. An MPN diagnosis can certainly be very unsettling and I don't know how I would have coped without the friendly interaction and knowledge that I have gained from this site.

I have Essential Thrombocythemia and also Jak2+. There is a lot to take in especially at the initial consultation with the haematologist - but I have learned a lot from MPN Voice and by reading the posts on this forum and I am still learning one year on from diagnosis.

Take Care

Mary x

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Welcome Jacqui,

You'll find lots of information here and on MPN Voice. We are all here for each other, don't be afraid to ask any questions.

I am PV jac2+ 11 years.

I hope you BMB goes well.

Best wishes

Judy

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Welcome to the group..

I have had ET for 4 years and was diagnosed with progression to MF last year. Do feel free to ask any questions of us all.

I have felt a great deal of support from everyone here.

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Can I ask plse, how do you know you ET has progressed? And what causes it to do that? Thanks Lyn

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Hi Lindiloo, it is not clear what causes it to progress, but it only happens in about 10% of cases. My Haematologist picked up changes in my blood panel during routine check ups. I became anemic and through further tests showed less than 1% blasts. A bmb was done to confirm which shows the fibrosis.

I am at very early stage and low risk at this time. In practical day to day terms I have continued on aspirin and have regular monitoring with the Haematologist.

I decided a while back to really focus on food and exercise so that my general health is solid. I find this very helpful. It doesn't stop me getting fatigued sometimes but overall I feel pretty well.

Katherine

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Thanks Katherine

I did not know this, I am still keeping pretty well!! and hopefully this condition will not progress. I guess only time will tell, or the powers that be come up with a cure???? In the meantime I will continue with my 6 monthly bloods and be happy and carry on with life.

Thanks again Lyn

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Welcome Jacqui. This is the place for information, reassurance, kindness, tips, and lots of love. It just gives you so much comfort , when you feel down and alone there will always be a caring fellow sufferer who you can identify with. I certainly feel that I have people who can understand exactly how I am feeling. Even our best friends around us cannot comprehend why we feel so tired and unwell at times. We are so lucky to have this invaluable resource . As ever,thanks everyone who runs the site and those lovely contributors.

Best wishes Sandy x

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Hi Jacqui, you've done the best thing by coming here where you'll get loads of support and questions answered. It's daunting at first but hopefully in time you'll be less anxious and things will settle down. Best wishes, Frances.

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Sorry you had to join us here but welcome. You will find loving support here so never be afraid to ask ask ask

Best wishes, Jan

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Thank you so much, I've never been on a forum, or blog or anything, so I might get replying etc wrong at first.

But I am very grateful for all your welcoming replies.

Also I'm not quite sure how I feel at the moment either, a bit fududdled! but I expect that's normal?

But thank you all so very much for the support already.

Jacqui x

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Hi Jacqui, welcome to the family. Sorry to hear of your diagnosis, but you've definitely come to right place for info and support. Good luck with the biopsy. Mel x

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Hi Jacqui. Welcome. Like you I found getting an MPN diagnosis difficult to handle, the venesections were ok but I really freaked when I had to go on hydroxea. Not sure why as I haven't had problems, I think the word chemo did it. This is a place for sharing the issues, feelings and difficulties that we face on our journey. There is information and support. I have PV plus other health problems. I find it a great help just to check in to this space, read what is going on and respond when I feel I want to. It's like a comfort blanket.

Good luck with everything. Life goes on.

Mal x

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Hit the nail on the head Mal,welcome Jaqui.......this is a very exclusive 'club'!!!!!!!Best to you and worry not,the last thing needed with an M P N is stress....easier said than done,our 'club' is the next best thing.

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Hi, welcome to this very exclusive club (that none of us want to be in!) Feel free to wear full evening dress while reading the posts - tiara is optional.

I have ET, diagnosed 6 or so years ago. You've come to the right place first, I read all sorts of rubbish on the internet (and believed it) before I found this forum. It was a great relief to find other people with the same disease living normal lives.

I hope all goes well for you.

Best wishes

Lizzie

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Welcome to the group

Try not to worry too much it scares you when you read up on the Internet.

My husband has got pv jak2 positive.

He was diagnosed 4.5 years ago he's very well in himself.

He started hydroxy 1.5 years ago and has tolerated it very well.

You've joined the right forum all the members are great so helpful too.

Pv is covered under critical illness policy.

Tracey

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Hello Jacqui, welcome to our forum, as you can see you are in the right place for help, advice and more importantly, support from us all. Please ask any questions that you have at any time, we will do our very best to answer them for you. If you would like any information about having a buddy to talk to them please email me at maz.cd@mpnvoice.org.uk, a buddy is someone who has the same MPN as you and is taking the same medication, so they can help and support you from the perspective of someone who really understands how you are feeling. Best wishes, Maz

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Hello Maz,

Thank you for the warm welcome, I am already feeling the benefits from you lovely people on here.

I didn't remember much from of what the haematologist said when I was diagnosed last week, except that it can be a bit of a lonely disorder as Its quite rare, and strangely of all the other things he said, that bothered me the most. But I now feel like I have somewhere to go for support and won't feel lonely.

So thank you x

And in time I hope I can give the same help and support that I have already received from this wonderful community 🤗

Thank you

Jacqui x

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When I found this group I did a dance (and that's not pretty), I felt just like you did. Confused, anxious, happy that they found out what was wrong so quickly. I never would have complained about the vague symptoms. My boyfriend rolled his eyes at me when it got to the "my toes hurt for no reason" stage. Not happy to have a cancer, but was damn pleased to make him eat his rolling eyes. LOL He's really good to me, but you must admit that all the symptoms start making you sound like a nut. (My name is Jacqueline, and I go by Jacki, but I have a few friends that like to spell it Jacqui.... you don't think it's the name, do ya?) Just kidding. This site has been a blessing this week. I'm only 2 weeks into my HU med and still nervous of side effects. So far, though, I haven't been nauseous. But my symptoms haven't abated yet either. I am seeing some skin changes on my face. Just blemishes similar to the ones you get when you start dieting and the toxins start leaving. (fingers crossed that that's what it is)

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