Has anyone been diagnosed with jak2

[Dazakella2010]

I have recently found out I have jak2 mutation and want to speak to anyone that has the same please.

[mhos61]

Hi, I have Essential Thrombocythemia with the Jak 2+ mutation.

What were the circumstances that led to you being diagnosed with the Jak 2 mutation?

[Dazakella2010]

Thank you so much for answering my post.... I have had a headache for 10 weeks now.... after having it for 4 weeks my GP sent me for some blood tests... they showed that my platlet levels were high. I was referred to an haematologist who sent me for future blood tests and an ultra sound of my abdo/pelvis. The blood had to be sent to another hospital and 2 weeks later the results came back that Jak2 mutation was detected.

[mhos61 in reply to Dazakella2010]

Has your haematologist given you a diagnosis of Essential Thrombocythemia, or are you still having further investigations?

[Dazakella2010 in reply to mhos61]

I wasn’t supposed to be seeing him again until 24th April but on Saturday I had a letter telling me I have got an appointment to attend the haematology day unit on Thursday.

[mhos61 in reply to Dazakella2010]

I’m sure everything will be explained to you on Thursday.

MPN Voice is an excellent website based in the UK if you need further advice on this topic. Are you based in the UK?

I had raised platelets which were picked up on a random blood test three years ago. Further testing revealed the jak2 mutation which in my case led to a diagnosis of Essential Thrombocythemia.

If you need further support don’t hesitate to ask questions. We are a friendly supportive group.

Mary x

[Mazcd Partner MPNVoice in reply to Dazakella2010]

Hi Dazakella, welcome to our forum. I would advise you to read as much as you can on our website as this might help you, especially before you see your consultant on Thu. Write down any questions that you want to ask your consultant, it's always best to write them down as it keeps you focused and it can be very easy to forget something important, it might also help you to take someone with you, as it can be quite overwhelming sometimes when you are given a diagnosis.

The main questions you need to ask are: what MPN you have; what treatment options are available; will you be starting on any treatment now, and if so which one.

mpnvoice.org.uk/about-mpns/...

Let us know how you get on. Best wishes, Maz

[Dazakella2010 in reply to Mazcd]

Thank you very much for your reply.... your very kind. Yes I will write everything down as your right I will forget. My husband is coming with me so that will help! X

[Dazakella2010 in reply to Mazcd]

I’m going to take a look at the website now... thank you x

[Dazakella2010 in reply to Mazcd]

When you type in jak2 mutation in google it doesn’t really help you to understand what is going on with you.... but your website is much clearer.... I’m really nervous about tomorrow 😥

[Dazakella2010 in reply to Mazcd]

Sorry for all these messages 😬

Is it normal to feel just not yourself? Also I have had a headache for 10 weeks... no energy and always tired! X

[mhos61 in reply to Dazakella2010]

Hi again Dazakella.

Don’t apologise for posting, that’s what we’re here for. It can be a stressful time waiting for a diagnosis, we can all relate to that! Tomorrow should bring some clarification, and it’s good that your husband is accompanying you.

Those symptoms that you mention are more than likely related to your raised platelets. The haematologist will discuss his/her findings with you tomorrow. If you don’t understand anything ask for a clear explanation.

Please keep us updated.

Mary xx

[Dazakella2010 in reply to mhos61]

Thank you Mary x

[Mazcd Partner MPNVoice in reply to Dazakella2010]

no need to apologize for the messages, that's why we are here, for you to ask things. And, yes, it is usual to feel not yourself, many of us do get days like that, when we feel unwell, fatigued, dizzy, confused, and just not right, it is a case of just finding ways to cope when you feel like this. Exercise can help with the fatigue, which I know sounds a bit daft, the last thing you want to do when you feel so very tired is to do some form of exercise, but even if you go for a gentle walk it can help, some people also like yoga, some people do go to the gym and find it helps, but it's whatever works best for you, and don't push yourself, if you feel so extremely fatigued that you don't want to get out of bed or move off the sofa, then you don't have to, some days it's best to just give in and rest.

I am sure you are nervous about your appointment today, let us know how you get on, glad to hear that you won't be on your own.

Maz

[Dazakella2010 in reply to Mazcd]

Hello maz

As you know I am seeing my consultant today... one thing I need to understand is do you have to have an mpn to have jak2

Kelly x

[Mazcd Partner MPNVoice in reply to Dazakella2010]

Hi Kelly, I actually don't know for certain, so I will ask the medical team for a definitive answer for you, I will let you know as soon as they reply. Maz x

[Dazakella2010 in reply to Mazcd]

Thank you very much.... my appointment isn’t until 2.30 so hopefully they will answer by then 😬 the consultant wasn’t very helpful when I first saw him so I want to go in knowing a little of what I’m talking about. X

[Mazcd Partner MPNVoice in reply to Dazakella2010]

the reply is: No JAK2 can rarely appear in other conditions eg MDS and people with leukaemia (chronic and acute) and rarely in people with normal boine marrow.

Far the most common scenario is in MPN

[Dazakella2010 in reply to Mazcd]

Hi all... do I sent to my consultant appointment yesterday. I have been diagnosed with ET and jak2 positive. It was explained to me a a rare form of blood cancer. He explained that because of my age the treatment at them moment is only 75mg aspirin. I could possibly need treatment in the future which would be chemotherapy.

Kelly x

[Mazcd Partner MPNVoice in reply to Dazakella2010]

Hi Kelly, now you can start to move on, I know how daunting this is for you, and very scary, but as you can see from this forum, there are a lot of us around so you are not alone. It will take you a while to come to terms with it and to make any adjustments along the way, but just remember we are here to help you, so anything you are worried about, or have any questions, just ask us, and you can always email me at [e-mail], very happy to help in any way.

And I know it sounds very scary when you are told the treatment is chemotherapy, most likely to be Hydroxycarbamide, which I myself have been taking for over 10 years, and it's not quite as scary as it sounds, it is a very very mild dose of chemotherapy, not like having chemo intravenously for other cancers.

Best wishes, Maz

[Dazakella2010 in reply to Mazcd]

Thank you so much.... I’m so glad I found you. I feel like I have support when I need it and for that I’m so great full x

[mhos61 in reply to Dazakella2010]

Hi Kelly,

Sorry to hear of your ET diagnosis, but as Maz says you can now at least move on. The worst part is over!

It will take awhile to fully understand your condition. I’m still learning three years on. Educate yourself from reputable sources such as the following websites, MPN Voice and Patient Power (USA). If you don’t understand anything ask here.

The word ‘cancer’ stops you in your tracks a bit. However, if you’re going to get an MPN, ET is the mildest form. Take courage from that. There are people on this forum that have had ET for decades. The aspirin should help with your current symptoms.

We’re all here to support you.

Mary xx

[Cja1956]

I was diagnosed with ET Jak2 positive 11 years ago for the same reason. I was getting terrible headaches for weeks and nothing was helping. I went to my primary care doctor and he did a complete work-up and said my platelets were high. He referred me to a hematologist who did a BMB who gave me my diagnosis. After I started treatment, my headaches went away.

Good luck on your journey. You will find a lot of support here.

Cindy

[Bobthecob]

Hello there, I was diagnosed with ET with jak2 mutation 19 years ago. I have tried various treatments over the years and had ups and downs. It feels overwhelming to find out, but please feel free to ask any questions. good luck and take care

[Dazakella2010]

Hello

Thank you for your reply.... I have been told it is a type of blood cancer! I suppose I will just have to wait and see what happens tomorrow.... last time I saw the haematologist there was mention on a bone marrow biopsy!

[hunter5582]

I was diagnosed with ET nearly 30 years ago. I am JAK2+ with a progression to Polycythemia about 6 years ago. I have been blessed to have a relatively light symptom load despite all that. I just recently had the JAK2 quantitative analysis done at the recommendation of an MPN specialist. My mutant allele burden is relatively low at 25%. Lower allele burden tends to have a more favorable course of the illness. If the doc did not already do the quantitative analysis this is really important to know. I have also learned that not all hematologists are equally knowledgeable about MPNs. It really is in your best interests to consult with an MPN expert. Here is a list of some patient recommended docs mpnforum.com/list-hem/ . All the best to you. Hope you keep checking in here. It is a great resource and support.checking in here

[Cllfairy07]

I have the jack 2 with pv. Doctor has been doing phlebotomies and at my next appmt in 3 weeks, he wants to start me on hydroxyurea to help me not get symptoms and not have to get phlebotomies as often.