Last year I suffered a haemorrhage and was very poorly. I was informed that genetic tests had been done and that I am JAK2 positive.
I am now under a haematologist and now having 3 monthly blood tests, all of which have been normal. The genetic tests show that I have underlying myeloproliferative neoplasm. I’m now thinking that this could be worse than the Polycythaemia vera (PV), Essential thrombocythemia (ET) or the worst one. I suspect they don’t know whether I have a CHIP or which Myeloproliferative neoplasms (MPN) I’m likely to develop, but a BMB has shown inconclusive. I have got in my head that i have the most serious Myeloproliferative neoplasms (MPN) and that they are not telling me everything, so as not to worry me. Why the importance of 3 monthly blood tests? My genetic tests show that I’m an Myeloproliferative neoplasms (MPN)-U. Now thinking I’m dying, which I know is ridiculous, but it’s all very scary. Anyone been through similar and does a JAK2 mutation always develop into an Myeloproliferative neoplasms (MPN)? Thanks.
Hello @Susiewest, welcome to the forum. Glad you found us as it sounds like you’re going through a worrying time with your health.
I’m so sorry to read that you likely have an underlying Myeloproliferative neoplasms (MPN) and that you tested positive for the JAK2 gene mutation. I was diagnosed last year with an Myeloproliferative neoplasms (MPN), Polycythaemia vera (PV), after testing positive for JAK2, so can empathise with your concerns.
An issue with MPNs is that they are a closely related family of blood cancers with only slight differences in blood cell numbers that denote which diagnosis they match best. One person’s symptom-free Polycythaemia vera (PV) is diagnostically related to another person’s horrible Essential thrombocythemia (ET) side effects. I was diagnosed with Polycythaemia vera (PV) but it had aspects of Essential thrombocythemia (ET) too. Some people’s diagnoses are closer to one Myeloproliferative neoplasms (MPN) but can transform to another over time. The usual order is Essential thrombocythemia (ET) to Polycythaemia vera (PV) to MF and rarely Acute myeloid leukaemia (AML). This is not to say one is worse or more serious than another, it’s just the way research shows they tend to progress.
This is why regular blood tests need doing, to gauge any changes to blood cell numbers. Catching the changes means treatment can be changed quickly if need be. I have blood tests monthly and then if my haematocrit is above 45 % I need a pint of blood removing via phlebotomy, much like with blood donations. If you’re having blood tests every 3 months then I imagine it’s because, like you say, your CBCs show positive signs of being normal.
The JAK2 mutation is found in over 90 % of us with MPNs so is pretty indicative that we have a blood cancer. There are dozens of other gene mutations found in people with MPNs, but JAK2 is the main one that causes our blood cells to proliferate. Other signs of MPNs are found via a bone marrow biopsy and physical symptoms, like blood clot events, itchy skin, eyesight issues and many others.
It sounds like you’ve experienced a blood clot event and that’ll put you at higher risk of another clotting event, hence the frequent blood tests to check your haematocrit and other cellular signs of disease.
So I’d say it seems like you’re on active monitoring for now, from what you’ve said. Active monitoring AKA watch and wait is a form of treatment as you’ll be checked regularly for any signs of the Myeloproliferative neoplasms (MPN) changing.
While I understand that dying is on your mind, perhaps try to remind yourself that if you’re not having any medical treatments like chemotherapy or phlebotomy then you’ve likely caught your Myeloproliferative neoplasms (MPN) early. You may not need any medical intervention. It could also be that it’s early days with the diagnosis and your haematologist is still analysing test results or awaiting results. If you live nearer university hospitals or labs used for analysis then it tends to be a faster process getting results and diagnosis. Another key point to hold onto at anxious moments is that we are likely to die with our MPNs than from them. They can be lived with into normal old age and don’t necessarily shorten our lives.
So for now, keep notes of all your queries and fears, try to avoid googling this stuff, and consider asking your haematologist for further clarification. It might help alleviate some worry to be told directly by a specialist what your diagnosis is and what your care plan is.
Have a look at the great Myeloproliferative neoplasms (MPN) information here, it’s been researched by blood cancer experts.
Keep us posted about how it goes, @Susiewest.
Hi @Susiewest and a big welcome to the forum.
I’m really glad you posted. I have a different blood cancer but some of those feelings and emotions are things we have all experienced.
I completely understand thinking the worst and I think that’s quite a natural emotion. I know I felt that way.
It is quite normal that the checks are frequent. I know for the first couple of years in my journey, they were three monthly. It’s really good that your team are keeping a check on you. However, on the flip side, I know that can cause a lot of anxiety.
I think it’s really important to write down all of your questions and that you ask them at your next appointment. I know at times, we can feel like we are making a fuss and taking up our teams time but I really urge you to ask them. Do you get the opportunity to talk through things? I wonder if you have a clinical nurse that you can contact?
I have put the link for the support line below. I found it really useful to talk things through. It may help to do this before your next appointment and talk about the questions you might ask.
Remember, no thought or feeling is ridiculous so please don’t be too hard on yourself. Its a lot of information to take in and your emotions will be up and down.
I hope others can share their experiences with you. In the meantime, please keep posting. You are not alone on this journey X
Hi @Susiewest you already have brilliant responses from @Duncan and @Nichola75., a great big welcome.
I have a different blood cancer and I was diagnosed 20 yrs ago and I have been on regular blood tests ever since.
When I was diagnosed I came straight home and wrote my will and funeral music.
Yes, I was sure I was going to die imminently, that I would not see my son grow up, marry and have children etc.
I reckon those thoughts and the ‘what if’s’ etc. are natural and certainly not ridiculous.
You have had an enormous shock.
My emotions and thoughts have been on high alert ever since I was diagnosed and before, during and after tests and appointments.
I am ever so grateful that I am on ‘watch and wait’ or ‘active monitoring’.
Be ever so kind to yourself I think that you are doing really well by so honestly posting to us.
Please do keep posting and remember your feelings are very natural.
Many thanks for your helpful responses. It certainly helps me feel less alone. Although I have fab husband and family, I try not to worry them and just get on with life. I had a CVST and massive brain haemorrhage, so it’s a miracle I’m still here, as it was touch and go for several days. Sadly, I’m now left with a brain injury, so had to learn to talk and write again. I have no memory of the first 6 weeks. So I’m trying to focus on how lucky I am, but the JAK2 has scared me massively. Every day is so lucky I am to have.
It seems that I’m a CHIP and the professionals can’t even tell me which Myeloproliferative neoplasms (MPN) I’m likely to develop. Last consultation I was told there are 50 genes and also an MPS which scared me massively. It’s the new me, having a new part of my brain, which has had to learn a lot. Something that really worries me is that the nurse specialist told me that they’ve never seen a case like mine in 20 years. Is it really that rare? I will try and ring your helpline one day, when all my family are out of the house. Sadly, I can’t find words, especially when tired, stressed or upset, so it might be a struggle on the phone.
Today I went for a dental treatment, which was a disaster. The drilling for a crown made we feel like my brain was going to explode, so I scared the dentist!! Just the new me.
Thanks for being there for me, as life is very scary for me. 
Yes, @Susiewest life must be very scary and unknown for you, you must have been through a massively scary time, but it appears that it has given you a great gratitude for life
You are never alone on our forum.
Please do ring the Blood Cancer UK support line on 0808 2080 888 in you need to and you feel that you are able to.
I am so glad that you have a fab husband and family.
Your dentist appointment must have been a really horrible experience for you.
Be ever so kind and look after yourself and please do keep posting
Wow @Susiewest you have so much going on, no wonder there’s been worry! If I may be so bold, seeing as you survived that horrendous sounding brain haemorrhage, it would be stranger if you weren’t feeling anxious about your health!
Really sorry to read of the brain injury and its impacts on your talking and writing. It doesn’t show here—you’ve communicated so clearly the worries that come up for people living with these dratted blood cancers. I’m in awe that you relearnt to talk and write. Perhaps you were spared 6 weeks of horrible consciousness after what I imagine was a rather traumatising experience physically and mentally.
I like your attitude. It really can feel like luck was on our side to be diagnosed with these disorders and be able to tell the tale. One of my main motivations using this forum is to find others lucky enough to share experiences of surviving and hopefully flourishing in our own ways and to learn as much as I can. You’re not alone in this all seeming new—it’s quite the crash-course in haematology for many of us!
Unsure of the statistics but according to research MPNs really are rare and some are rarer still when they don’t match the usual diagnostic criteria, for example folks who don’t have the JAK2 gene mutation but do have an Myeloproliferative neoplasms (MPN). Dare I say it, but sometimes even GPs haven’t heard of MPNs, let alone referred patients onto the right specialists. It would seem from folks here that many have lived with MPNs for years and put the symptoms down to other ailments.
Fatigue sadly is a very common side effect of having too much blood and overactive blood production. It even has its own acronym, CRF (cancer-related fatigue) as it’s so frequently a symptom we live with. If it’s any comfort, I find when my haematocrit is lower and/or after I’ve had phlebotomy I tend to be less fatigued. The hydroxyurea I take daily helps disrupt the overproduction of blood and so I think that also reduces the fatigue. And by fatigue, I mean bone-deep exhaustion that stopped me from living actively like before my diagnosis. Thankfully that faded over a few months for me. Try to practice not letting stress get to you as it’s a big old energy drain and can worsen fatigue.
As for the dentistry, well that would be horrible on a good day, let alone after all you’ve lived with! Perhaps with future medical appointments let the specialists know what you live with and there might be ways to minimise side effects. Be mindful that your blood is misbehaving and let doctors know who might not be experts in haematology as excessive bleeding during procedures can be an issue.
Glad you’ve found the forum, I hope it can as supportive for you @Susiewest as it is for me.
Well I had another check up with my Haematologist and my blood levels are still normal. Back to see him in 3 months, but then he wants to talk more about it then. Well that has worried me again, because I keep thinking does he need to tell me then. I tried to ask which Myeloproliferative neoplasms (MPN) I will develop, but he couldn’t tell me. Why not, is there something he doesn’t want me to know at the moment. I’ve now asked my Nurse to find out what condition I have as I need to require for travel insurance, as we intend to live a bit now I’m feeling better. Life has to go on. I’ve now managed to convince myself that I have a serious MPS, which is very serious, but my blood levels are normal, slightly on the higher side, but within the normal range. Sadly, a MRI has identified something not related to brain haemorrhage, that I have a parotid tumour, which I need to see a surgeon about, but they think it’s not cancerous, but scared me a lot. I cry a lot these days, but very privately. I try to remain positive, hoping things will get easier soon. Thanks for the support on here as much appreciative. Xx
Hi @Susiewest and thank you for the update.
I think you are making some really positive steps to plan things to look forward to. I think this really helps and as time has gone on I have got much better about this .
Insurance can be tricky so it’s good your nurse can support you with the information you need.
I remember being very emotional in the early stages and still have days like that now. I know it’s hard, but try and share how you’re feeling, you don’t always have to do it in private.
We are all here when you are having a tough day or a tough hour, as well as the helpline.
Please take good care of yourself and keep updated X
Hi @Susiewest thanks for the update.
I often think that medical people do not realise how we hang on their every word and nuance and dissect it.
I also think that my emotions are on high alert ever since I started this journey and now I can burst into tears out of the blue.
However personally I think it is a lot better medically to let emotions out,
@Nichola75 has given you a great response.
Yes, if you are feeling better make the most of every day although yes, travel insurance can be a problem and costly.
Please do keep us posted how you are and what you are up to.
Look after yourself
Well, my haematologist won’t tell me much, but once again very scared. Having dared to look at gene tests it looks like I have a very serious form of Myeloproliferative neoplasms (MPN) or Myelodysplastic syndrome (MDS), although the JAK2 has remained much the same. My blood levels remain normal. I original thought we are dealing with JAK 2 mutation, but seems they’ve found another gene test to do called Acute & Myeloid Virtual Gene Panel but comment is’The trephine is crushed fragmented and mostly cortical bone. It is not possible to assess cellularity or structure and differentiate between CHIP and Myeloproliferative neoplasms (MPN) on this sample’. It looks like a TET2 has been identified.
Why does my Haematologist not explain anything to me, even when I ask. The response is always we’ll talk in 3 months.
Are the gene tests very accurate? Mine comments that
‘Many variants detected in myeloid malignancy are also present in clonal haematopoietic cells in a subset of healthy individuals. We cannot exclude the possibility that these finding represent CHIP (Clonal Haematopoesis of Indeterminate Potential)’
This is beyond me but suspect it’s beyond anyone? I feel well, but likely have or will develop a form of leukaemia?
Oh @Susiewest you definitely lost me after line 3 medically.
If your haematologist says that you will talk in 3 mths then that gives you the opportunity to write down your clear questions you would like answers to.
I have learnt to be pleasantly assertive and not leave the room till my questions are answered.
I have another blood cancer and I am on a system of ‘watch and wait’ or ‘active monitoring’ which means I have tests at regular intervals to see the variations or not.
Mine fluctuate sometimes.
I know this might sound mad but if you say that you feel well just go and live your life as you did before having medical problems. I have found that diversions can help with my mind obsessing.
Please do keep posting how you are doing and feeling and be ever so kind to yourself
Hi @Susiewest.As @Erica says. Use this time to write down all of your questions ready for your next appointment.
I know it’s frustrating when you don’t feel like you are being given all of the information but it’s good you have an appointment not to far away.
Only your medical team can answer questions about your diagnosis as everybodys journey is so different.
Remember, we are all here for you, and the support team as well X
@Susiewest well reading through all of this, it sounds a bit like you are version of the M1 right now, great and free flowing in small parts, the rest a reduced speed limit, lots of traffic cones, confusing road signs and congested by the numbers trying to use it.
Breaking it down, you had an emergency incident, lots of triage response, people rubber necking, out comes the two guys with a digger and a guy from the council with a clip board.
A few hours of fettling around and the tradesman’s whistle, shake of the head, that pouting of a smile and the cry, “we are going to need a bigger digger and quantity surveyor, plus a few more cones”
Gene tests are just that, they only say what genes are there, just like the guys in the hole looking at the ground structure. They are looking for signs of something that links a sink hole, the subsidence from the surrounding area.
It has taken nearly a year of visits to the leaches and the specialist for them to see the way my own internal road network functions. To try and understand the reasons why the blood flow is clogging up. It normally is the person who fly’s down the outside lane, too self important or absorbed by their speed and then try and cut across three lanes to get to the junction, causing three lanes of hold ups.
All these tests are the medical team trying to understand which part of your body is being a stupid driver.
I have Polycythaemia vera (PV), was undiagnosed for years, despite all the classic symptoms, but my docs and tests over the years, never linked them together, that took a 91 year old driver to do a right turn across a duel carriage way and a trip in ice cream van with no ice cream (if you know the sketch, you know 
) to the A&E.
Test results are short hand to be read by people who say they understand it, just link the lists of numbers people love to share on sites, (Top Trumps of blood tests), for us lesser mortals, this is just a dance of emotions and feelings.
Dance the day your cancer has given you, as you will find out, Myeloproliferative neoplasms (MPN) and it’s numbers can have no relationship to how you actually feel.
It does sound like from that first hole in the motorway, the gas and the phone company have been asked to join in the hole digging.
We are a complex being of water and stardust, with a vast host of hitchhikers and squatters living on and in us, a cross between Spaghetti Junction and the roundabout in Reading, which is five or six roundabouts linking around one.
All these tests are saying is, we have found x and y present, p and j are absent, so we need to dig another hole.
That is why there is a gap between the visits, it gives our bodies a chance to reveal it’s changes, if the road fixes are working, or to reveal that the water guys missed a leak when the electric board put a fibre optic cable in.
Now all that above that sounds a complex mess, but to the two guys with the shovels and a digger, it makes sense.
It is simply put, an information war, the more info, the better they can build a picture of the way your body is working or not working.
I know this is hard, but stop chasing the data for yourself right now.
Let the tax money pay for the people who have a job in the field. You just have control of your mind and can chose to dance with your body or get into a muddle of “fighting” it, (hate the war terminology).
Being scare is good as it makes us hyper aware of what is going on in us, but it can make us freeze.
My Polycythaemia vera (PV) nearly killed me according to the specialist, 500mg of chemo and a large lump of aspirin a day, 30g of ground flax seeds, vit C and multi vits (low iron), try to exercise, sun block and following our site fashionista @Erica hats, each day is letting me dance a lot easier with the cancer.
Yes, it has a chance to develop into another form of cancer (waiting for the mole hunter team to see me), but I get to decide on how I live each day.
Bad days, rage against the machine and the universe, blah days, box sets and books, good days, well out comes the camera. Acceptance is a hard journey, but it is a solo journey made easier by having people holding up signs encouraging you. You just have to remember to un focus now and again to see them and hear them.
You are on the recovery truck now of life, let the people do the jobs they are trained in and try to relax in the slightly grubby waiting room with out of date magazines and plant that is really trying to stay alive, while they look at your road network under the hood.
Being “reborn” is always hard in a life, people expect the old you, get confused by the new you, you live with a ghost of who you were every day, it is hard on both you and those close around you.
You sound like your family is there for you in the way they can only be if you let them be, finding the conversation to explain how you feel physically and emotionally will be hard on both of you, but it is the honest start of your new life.
Let the medics do their job, ask them to explain in layman’s terms and live each day as best you can.
Dance in the rain of life and enjoy the rainbows in the sunshine
Hi @clickinhistory I am now dizzy on the M1, please keep it simple for my little brain, but I did agree with the second to last paragraph.
@Erica it worked then ps now have a selection of three hats, you have taught me well obi won 
Well I’ve had another scare, just the new me!!
Back in February I had an MRI scan as my 6 month check up on my brain. 6 weeks ago my Neurologist wrote to me stating that a parotid lesion had been found and need referring to ENT. I went to ENT 4 weeks ago and was poked and prodded by numerous people. I was then sent for a biopsy and ultrasound. The result was inconclusive, so last Monday I went for another MRI scan with contrast, number 8 in 12 months! Two hours it took, with me gritting my teeth.
They then told me I’d have an appointment 2-4 weeks. Well that was when I lost my patience, having trouble with emotions and temper with my brain injury. I then wrote to my GP, Neurologist, Haematologist, nurse practitioner and PALS. PALS replied the same day, saying they’d help me. Long story, but I told them I wasn’t coping, crying every day and feel like running away from it all!
I wanted to know what was going on, as nothing explained to me. My husband was fed up with me, as usual. The next day I received a call from Pals that my results had been done as a priority and that I could see the consultant that afternoon. Arrived at ENT and the surgeon saw me within a minute.
Glad to report that no cancer seen and benign Parotid, but needs removing as could become cancerous and very rarely cancer can be found after surgery. Now have to wait 8-9 months for surgery. It’s a big op and they have to be sure after my CVST, that I’m fit for surgery. My nightmare just goes on, but as my husband keeps telling me, I’m still here.
I can’t even feel the lesion and it’s 11mm.
Thanks for reading .
Oh @Susiewest I really feel for you and as I read your post I could really feel your emotions coming from the post.
I don’t know about you, but I am a very visual person and can see things inside me, when I was first diagnosed I wanted to pull the leukaemia out of me.
I know this does not help you medically, but from reading your post I am really impressed with your PALS and I think it pays to really tell them how the situationt is really affecting you emotionally as well as being factual.
It is good news that no cancer has been found, but now the wait goes on for you.
The Blood Cancer UK support line is there for you on 0808 2080 888 when you need to just say it how it is for you for you and so are we.
We cannot do anything but to be here for you but personally I find it does just release that valve a bit on my inner pressure cooker.
Sending you loads of love and please do keep posting xx