hi, i have recently been told i have jak 2 poitive and i have an appointment for june 10th to see hematologist, no one has told me anything, i have only spoke to a nurse who has told me my blood is stickier than it should be, and that's it, so of course i googled it, does this mean i have one of the cancers associated with it? PV, MF, ET, and i cant remember the other ones, i started off with high platelets, i have not been feeling well for a longggg time, i am 49 and i have been thinking all along it was all signs of the menopause, it started with palpitations, extreme fatigue, dizziness, visual migraines, at the moment i have constant ringing in my ears as well am not sure if that is a to do with this, lots of other things been going on, so high blood platelets and jak 2 positive, will it mean i def have one of the cancers? thankyou, my anxiety is through the roof
jak 2 positive: hi, i have recently been told i... - MPN Voice
jak 2 positive
If you are jak2 positive, have high platelets, and several constitutional symptoms, it does sound like an MPN. But please try not to panic. You might need a bone marrow biopsy to determine which one you have. Once you find out, you will get the treatment you need. With Et and PV, the majority of people will have a normal life span. You will need to find a good hematologist and get monitored to control your symptoms. Good luck with everything.
Cindy
I am glad you found your way to this forum. You are definitely in the right place. This is a great source for support and information from a patient perspective about MPNs.
To start with, if you are JAK2 positive and you have thrombocytosis, then you likely do have a MPN. The "feeling unwell" you refer to is quite common with MPNs. The constitutional symptoms we experience are often more bothersome than what people think of as the primary risks of thrombosis (clotting) or hemorrhage (bleeding). All of the symptoms you list are quite well known to those of us with MPNs. Yes - they are related. The important thing to know is that the JAK2 mutation deregulates the JAK-STAT pathway. This does more than increase hematopoiesis (making blood cells). Amongst other things, it causes your body to make too many inflammatory cytokines, At the core, MPNs are inflammatory disorders. This is part of why we experience so many different symptoms.
It is very scary to find out you have a "Blood Cancer." Many of us look at this as a cancer with a little "c" rather than a big "C" . Most of us live normal to near-normal lifespans. While there is no cure, there are multiple treatment options and ways to manage the symptoms we experience. There certainly can be challenges, but the challenges can be managed.
I was diagnosed with ET about 30 years ago. It progressed into PV about 7 years ago. I am JAK2 positive with a mutant allele burden of about 26%. I have lived a rich life and at age 65 continue to do so. There have certainly been challenges, including heart and brain surgeries (not related to the PV) in the last couple of years. I have had a few other interesting health-learning opportunities, including issues with my MPN. I am about the change my treatment protocol from phlebotomy-only to PEGylated interferon to better manage my symptoms and hopefully prevent disease progression. I am hopeful for a positive outcome.
Please know that you will have a long time to sort this all out. You will have plenty of time to learn more about MPNs and the unique way your MPN presents. There are excellent resources available, including this forum. A really good place to start is the Voices of MPNs website. voicesofmpn.com/ .
At this point the best thing you can do for yourself is to ensure that you consult with a MPN Specialist, Most hematologists do not have the KSAs to provide optimal care for MPNs due to their rarity. Here is a list of docs with MPN-expertise. mpnforum.com/list-hem./
Please know that you will have this. You can manage this situation, Give yourself some time to come to grips with it. As you learn more, you will find it easier to manage, Yes - there are challenges. Believe that you can find ways to mange the challenges.
Please stay in touch as this unfolds. All the best to you,
thank you, i am absolutely sick with worry at the moment, i have not been told yet if i have thrombocytosis but then again i have not been told much at all, i have this constant ringing in my ears, i just feel like i have been hit with this shock and now i have to wait til june 10th to even speak to anyone, i am also self employed have my own dog grooming business, and at the moment for the first time ever i have had to take time off, i worked through all the feeling ill, but just now i feel like i can't face anyone without bursting out crying, i have quite a few other stressful things going on just now as well, it just feels like everything is falling apart, so am i right in thinking it will be either PV ET or MF, also at the moment the first step seems to be for me to be seeing the hematologist, i don't know if i will be referred to an MPN specialist? All this cant have came at a worse time, even trying to speak to a GP now is so difficult because of the covid
Here is the WHO diagnostic criteria for MPNs.
mpnconnect.com/pdf/who-diag...
There is no way for any of us to say which of the MPNs you are or are not positive for. You are right in thinking that it will likely be one of them with JAK2 positive and elevation in platelet levels. If indeed elevated platelets is the only blood cell line that is elevated, then ET would be the most likely diagnosis. Do note that there are people who are JAK2 positive without having a MPN. There are also people with a MPN who do not have any of the three driver mutations (JAK2, CALR, MPL).
The fear is understandable. We have all experienced it. The main thing to know at this point is that this is a long-term health issue, not an immediate threat to life. It is usually more about quality of life than its length. Assuming you do end up diagnosed with ET, which may or may not be the case, then know this. There is a truism that you are more likely to die with ET than from it.
It will be helpful to you to learn the basic terms that relate to MPNs.
Thrombocytosis = too many platelets
Erythrocytosis = too many red blood cells
Leukocytosis = too many white blood cells
JAK2 = Janus Kinase 2 - a gene that is involved in the JAK-STAT pathway. It drives hematopoiesis, immune and inflammatory response. There are two known mutations of this gene, JAK2v617f and JAK2 Exon 12.
Here is a glossary of more terms mpnresearchfoundation.org/G...
.
Regarding referral to a MPN Specialist, that is not something that will necessarily happen on its own. In most healthcare systems you have to make it happen. That is why it so important to have the list. mpnforum.com/list-hem./ . How you make this happen depends on which healthcare system you are in. It is a fundamental truth in all systems that assertive patients receive higher quality care. Passive patients do not. You have to be your own best advocate. Know that you can do this.
Please do hang in there until you can get clear answers. Know that there will be answers and you will be able to deal with whatever the answers are. Please do stayt in touch as this unfolds.
i have just realised thrombocytosis is high platelets, sorry no one told me this either, thankyou
Hello doglover49, welcome to our forum. We completely understand how you are feeling, it is very daunting when you are waiting for a definitive diagnosis, and much harder for you as you are having to wait another month. I would suggest that you read the information on our website, mpnvoice.org.uk, particularly the section about MPNsmpnvoice.org.uk/about-mpns/
I would also suggest that you start writing down your questions so that when you have your consultation you can refer to the list and then not forget to ask what you really want to know. The main questions are:
which MPN do you have; will you start any medication, if so, what and when; how often will you be reviewed; who is the haematology nurse specialist at the clinic so that you have someone you can contact to ask questions.
Once you have been told which MPN you have, you can then move forward, it really is much easier once you know.
It might help you to discuss how you are feeling, and that you are unable to work, with your GP who will be able to give you support and advice on ways to manage this stress.
With best wishes, Maz
thankyou for replies, yes this is just very early days for me and i don't know what a lot of this means, i have just been reading a bit about it all and was really shocked to see what it actually will probably turn out to be, i am just finding it a bit difficult the not knowing, but hopefully i will get answers in June, it is the more not knowing at the moment, it has just overwhelmed me a bit, i will go back to work in a few days once my head has sorted itself out, even though am tired, dizzy etc i have been like this for a long time anyway and just got on with it, it's more my emotional state at the moment that is stopping me from working, your replies are much appreciated, i am going to try and just carry on and not worry too much (easier said than done!!) and once i get answers i know where to come for advice etc, thankyou
You poor dear, I really feel for you. I think the disease is not as bad as the initial shock implies. I was diagnosed recently and the fear and shock will dissipate, you will come to terms with it. I just think with the stress you are under and your symptoms you should definitely be taking an aspirin a day, the low dose, enteric coated kind.You will learn all about MPN’s slowly but surely (there’s no hurry to try and understand everything immediately) and many people here can help you with their experiences and support. You have come to a good place and try to not envision the worst, it really may not come to pass and only settle for the best with it comes to whoever will be treating you.
Wishing you all the best fellow dog lover ☺️
thankyou, my partner said this too about taking an aspirin do you think i should do this? i am beginning to get my head around things a bit now, as you say it is the initial shock of it all, i am having bad fatigue just now, i could just sleep forever, and this terrible ringing in my ears constantly which i now think is connected also
Others may not condone me saying saying, but yes! I would take one a day, it doesn’t matter what time of day and don’t take ibuprofen when you’re on the aspirin. Just make sure it’s the right aspirin, they’ll know in the chemist and ask if there are any contraindications other than ibuprofen.
Tinnitus is a symptom, I know that Steve_Socrates suffers from it on and off, so once things are under control for you, hopefully, it will be more off than on, or even just gone.
I had a weird stomach virus for a week and a week later the ‘post viral fatigue’ was killer, I was horizontal and slept all day for 8 days….. I think this kind of thing can also happen if you go too hard at anything. You will come to know your limits, post viral or not.
thankyou, i will go and enquire at the chemist, i will just be glad to get this hospital appointment in june, the funny thing is i have had all these symptoms for ages but because i didn't think it was anything serious i was able to just carry on, but now my head knows there is something wrong i feel like i have had a bit of a breakdown, i am taking a bit of time out feeling crap and getting my head sorted out, i could just constantly sleep at the moment and still be tired
Understood, bring on June! I know the feeling, since my diagnosis its now like I’m allowed to be tired but it messes with your mind, like questioning if you are the same amount or more tired…is some of it psychosomatic now….ugh.but ultimately, from what I’ve been told EVERYONE suffers the fatigue from having a MPN.
I think it’s really great that you’ve taken some time out, it really is a process…it sure has its moments of needed distraction but initially I think its really important that you should give yourself this time.
If you want to sleep just do it and feel good about doing it.
Another thing is that a definitive diagnosis as to which MPN you have can not be done without a BMB- bone marrow biopsy…I know from experience!
It’s not particularly pleasant but it’s over before you know it.
Wishing you tons of luck, let us know how it goes.
Jacqui
i must admit i am feeling guilty like i am being lazy! but even getting myself ready in the morning is a chore as soon as i am ready i could just go back to bed, i think my mind is a bit exhausted definitely, i phoned my GP the other day ( they phoned me back and i got the nasty one who no one likes) he basically said to me whatever happens don't worry too much it has a good prognosis, i don't know how he knows this?? he wasn't much help, so i will just need to wait, i will just be glad to know what is going on and really hope i can get something so i am not so tired, i keep thinking once i get back to normal it will be ok, even doing my housework for the last wee while i have not been keeping on top of this and that makes you feel worse, thankyou for your replies and i will come back to this once i get told what is happening, i read about the BMB and not looking forward to this if i need it done
i have been to haematologist today, and she has told me i have E.T. my platelets are around 600, so i have to take an aspirin a day, and will go back in 8 weeks see if things are better, i hope so cause i am struggling with things, fatigue, ringing in ears dizziness etc, she also told me to look at it as having a blood condition and not use the c word
I’m really glad you finally have a diagnosis because now you can get treated. I got diagnosed with ET Jak 2 positive in 2008,at age 52. In 2019, I was diagnosed with post Et Mf. It has been a long road, but I have tried to live as normal a life as possible. I was a special needs teacher for many years but had to leave due to extreme fatigue and brain fog, as early as 2003. I got my insurance license and have been working from home for a while now. My advice, for what it’s worth, it’s just take one day at a time, maintain your friendships, and get rest when you need it. Also find out what supplements you can take to keep your energy levels up and drink plenty of water. Also, don’t be shy about finding an mpn specialist. It wasn’t until I found this site in 2018 that I got the courage to change my doctor.Good luck on your MPN journey.
thank you, yes i have been struggling badly with the fatigue, i am really hoping taking this aspirin a day is going to help with this too, at least now i have a bit of hope i am going to start feeling a bit better, it has been hard the last couple of years, i have managed to keep working but it's not been easy, i am self employed so that pushed me to keep going, and the brain fog you mention yes i have had that a lot too, that advice is great the taking one day at a time especially, i have been feeling very overwhelmed at how i am supposed to continue feeling like this all the time, but i am really hoping taking this aspirin a day will help and a few other changes i will need to make, thankyou
Hi, at least you know now! I was diagnosed with ET last year, it's a shock to find out you have this - and you need to be kind to yourself about the symptoms you are having. It is hard to take in, and to know you have this for the rest of your life, but as has been said to you before you actually knew, you won't die from it - and you can get lots of information and advice from people on this forum that will be helpful.
It can be really overwhelming at first, so make sure that you don't overdo it - take time out, distract yourself if possible, as it can take over and go round and round in your thoughts.
Make some changes if needed to help you live with the ET - the very first thing I learnt is that for us it is very important to keep well hydrated - drink plenty, it helps and being hydrated itself makes sure your blood is at optimum level for functioning. It helps some people with lessening some of the symptoms too.
Give yourself time and space to take it all in, though you have a rare blood cancer, as we often say on here, it is cancer with a small 'c'. It used to be classed as a blood disorder, then was reclassified around 2008 by the World Health Organisation (WHO). The JAK2 gene mutation means that our bone marrow is constantly producing platelets, rather than stopping when our blood has enough. Platelets are what makes blood clot, so that is why it is sometimes referred to as 'sticky blood'. It is going to be a learning journey for you, and you will likely end up knowing much more than your GP about it - it is rare, and even some haematologists don't know much about it.
For a start, I notice Hunter posted an introduction to the MPN information before, and his post is useful if you do feel up to taking in some more information. Maz also gave a useful starting point. Remember, especially as you already have a lot of symptoms, that the diagnosis itself son't change your life massively, that you are now being monitored and treated, and there is a reason you have been feeling like you have - you are not lazy or struggling for no reason, it is all related to the ET.
We are all here for each other on this forum, whether for any questions about anything, or just if you feel you need support or sympathy! Take care of yourself and take your time, don't overload yourself too much all at once x
thank you, i was quite prepared for this so it has actually been quite a relief to finally be told this is what has been wrong (probably been going on for the last couple of year) i thought all along i was going through the menopause! probably that too though, the consultant was very nice, and told me to think of it more of a blood disorder than cancer, at the moment all i have to do is take an aspirin a day and see how i get on, then go back in 8 weeks, i can't believe the way i have been feeling all this time absolutely shattered most of the time, i have went back to my work, but cut down a lot just now and i am finding this okay, thankyou for your reply Minu68
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