JAK2

[sunblock]

Hi I've been tested for jak2 yesterday nothing was really said to me about it ive looked myself and its completely freaked me out as it mentions cancer. Can someone tell me what it means if positive? Its making my anxiety worst. Also the blood form said urgent how quickly should it come back I'm uk based? Its all come about as my red cells has been out of range and I had suspected tia but turned out wasn't that so that's how its been picked up as I also have neurological symptoms

[hunter5582]

Welcome to the forum. Glad you found your way here. This is a great place to get support and information.

JAK2 - Janus Kinase 2. What they are testing for is to see if you have the JAK2 mutation, the most common of the three driver mutations that cause Myeloproliferative Neoplasms, Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. Do note that some people can experience elevation in blood cells due to another medical condition (e.g. secondary polycythemia).

Red blood cells out of range (high) = erythrocytosis. It is the primary symptom of Polycythemia Vera. 95% of people with PV have the JAK2 mutation. The MPNs were reclassified as blood cancers by the WHO in 2008. Many of us with MPNs look at this as cancer with a small "c" rather than a large "C." If you do in fact have PV, it is important to understand that this is a chronic condition, but usually not immediately life threatening. PV is something that can be managed for many years.

I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I have been able to manage it for all these years and continue to do so. The good news is that treatment options are improving and we have several very promising options in development.

If you do turn out to have a MPN, then it is important to consult with a MPN Specialist. These are rare disorders and most hematologists do not have the KSAs to provide optimal treatment. Here is a list of docs just in case you do end up needing it.

mpnforum.com/list-hem./

While you are waiting to find out your status, please know that MPNs can be managed for many years. You will have plenty of time to sort this all out. DO please stay in touch and let us know what you find out.

[sunblock in reply to hunter5582]

Hi thanks for replying.....Do anyone of you guys with the condition struggle with lower than normal oxygen levels with it? It keep keeping me awake at night and no idea what it is when I mentioned to my gp they thought I had an infection but after being on antibiotics for months im still the same. When ive looked at my bloods they seemed to be Fine till around 2017 when they started going just out of range on the red blood cells, hematocrit, and mean cell hemoglobin. The rest seems to be okay as far as I can see but I haven't got the bloods from when I saw neurology the other day which seems to be what made my haematologist jump and test for jak2. I have a history of clots im on life long blood thinners for APS not sure if you know what that is?

[hunter5582 in reply to sunblock]

Erythrocytosis is driven by hypoxia (reduced level of tissue oxygenation). Secondary erythrocytosis can be the result of conditions like COPD and obstructive sleep apnea. Do be sure the hematologist knows about the potential oxygen deprivation at night. This could be a cause of secondary polycythemia rather than PV. If you were to have a MPN and be experiencing hypoxia due to another medical condition, it would make the erythrocytosis worse. Perhaps it could make ET look like PV or make the PV worse.

Do for sure follow up on the oxygenation issues. This can be a serious condition in its own right. If you are not already seeing a pulmonologist, suggest you do so.

I hope you get this all sorted out ASAP.

[sunblock in reply to hunter5582]

Ive mentioned it to the sectary today when I asked how long for results so he is aware. Im guessing he will want to wait for my results before they start doing further tests for that. I don't have sleep apnea but I am asthmatic.

[Ebot]

As Hunter says checking out whether you are positive for JAK2 is one of the diagnostic tools for Myeloproliferative Neoplasms (MPNS).

These are most definitely cancer with a small ‘C’. In fact when I was diagnosed eight years ago they were called ‘disorders’ (MPDs) and not ‘neoplasms’ and had only just been reclassified by the WHO. I know I would have been completely freaked out if they’d been referred to as cancers. Such is the effect of one small word change.

The important thing to remember is first, that you don’t yet have a diagnosis. There could be another simple explanation. Second, if you do indeed have an MPN (possibly PV) it is a chronic condition which has very little bearing on your lifespan. And third, and absolutely key, is that it is well managed by a specialist MPN haematology team. The fact that you are being investigated as a matter of urgency is reassuring rather than worrying.

In the meantime, it’s worth looking at some reliable information on MPNs (there’s a lot of outdated, anxiety inducing, misleading stuff on the internet - be warned!). Check out MPN Voice for sensible, up to date information (they manage this Forum and were set up by the team at Guy’s Hospital which is a world renown centre for MPNs).

Wishing you all the best. Let us know how you get on.

[sunblock in reply to Ebot]

Hi yes the internet seems to have freaked me out some what and confused me really wish I hadn't googled it as its now consumed my whole mind. I already suffer with quite bad health anxiety so has made it so much worst. Just hope im not waiting long for the results as not sure I can take it. Yes im worried about life span as im only 32 and worried I won't be able to have kids etc now. I will take a look thanks

[Ebot in reply to sunblock]

Please don’t think your life might stop if you are indeed diagnosed with an MPN! And there are growing numbers of younger women (and men) on this Forum who have families. Guy’s even has specialist pregnancy clinic. You have your whole life before you, keep dreaming and planning!

[sunblock in reply to Ebot]

Will try to not think like that ive been told today I wont get the results for probably two weeks so trying to put it somewhere else in my head till then. Easier said than done as I struggle quite bad with anxiety, would be easier if lockdown wasn't going on as I would keep busy seeing people etc

[Mazcd Partner MPNVoice in reply to sunblock]

Hi Sunblock, we completely understand your anxiety and how worried you are at the moment having to wait for your test results. You should speak to your GP about how you are feeling as he/she will be able to help you manage this, we also have some great relaxation podcasts on our website that might help you

mpnvoice.org.uk/coronavirus...

I would also advise that you read the information on our website about MPNs, I am sure it will help you understand more about MPNs

mpnvoice.org.uk/

Once you have the results of your tests and have a definitive diagnosis you will be able to move forward, and as you will see from the posts and replies on this forum, there are loads of us living with MPNs and have been for many years, you are not alone on your journey, we are all here to help and support you. With best wishes, Maz

[sunblock in reply to Mazcd]

Will have a look at the podcasts and probably will help me. Im naturally a worried which doesn't help me what so ever. Thanks for messaging me will take a look at the website when I feel a bit more comfortable with it all

[cmc_ufl]

I am 30 and have been going through the diagnosis process myself since mid-January. I can completely relate to to your feelings. I have a young family - wife, 3 yr old daughter, 3 week old son. When I first was told I was being evaluated for an MPN, my world crashed around me. I can tell you that although it might not seem like it, it does get better. Even if you do have an MPN, it can be managed well, and you can very well live a normal life span. You have not had time to process this news, and do not yet even know if you have an MPN. My advice is to take things one step at a time, and know that even the worst case scenario is not that bad.

In my case, my JAK2 test came back negative, as did my tests for CALR and MPL. I will likely be having the CALR and MPL tests done again since the assays used were not that sensitive, but I am having further work done to see if I am one of the “triple negative” MPN patients.

You do not mention platelets. Is it just your RBCs that are out of range? It is common, but not always the case, that platelets are also elevated with MPNs.

This forum is a great place. Lots of very good people on here. You will find better information here than anywhere else on the internet.

[sunblock in reply to cmc_ufl]

Its horrible isn't it my constant didn't say much but google told me enough and probably made it much worst for me also. No my platelets are in range but im already on blood thinners for a clotting disorder so im not sure if that would lower that or not? RBC out of range and my iron is out of range too ie too High rather than low I had an iron infusion over a year ago and instead of it dropping naturally it just went really high and no one seems to know why. As I was severely deficient before it.