Hi. I posted on my thread about waiting tine for jak2 calr etc and my appointment for results from the consultant is 29th June but I telephoned yesterday to ask if they were back.
I got a call back from a receptionist or nurse who stated my jak2 was negative so that pretty much rules out ANY mpn.
Going by this site and other Internet sites that statement is not true. I had suspected ET on my forms and jak2 is only present in just over 50 per cent. I know my other tests are not back but he stated ruled out just on that result.
I wish I had never rang because its confused me .
I hope my consultant doesn't say the same because obviously they aren't on the same page as what ive researched.
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Hello I don’t have et I have mylefibrosis iam jak 2 positive but my husband has pv and he is jak 2 negative so yea you can still have an mpn with a negative jak 2 my hubby was tested for other mutations such as x on terv I think that’s correct spelling I would definitely wait for your appointment but the person you spoke to is wrong unfortunately there’s a lot of misinformation that’s why I will always recommend finding a specialist in mpn good luck Hun xxx
Thanks for replying. I am feeling so disheartened now with our nhs to actually state that. He didn't say "well that almost certainly rules out polycythemia. He stated all mpns . I know I shouldn't have rang for results but I just wanted to know. My other bloods are not back yet. My appointment is only 4 weeks away now. I just hope the consultant isn't so dismissive. My consultant in 2008 2009 was cross at my being there. He didn't want to deal the mpns or tedt for them. He said he treated leukemia!!!!. My new consultant also stated that my old consultant was like that because et has a normal life expectancy. Correct but it's still a cancer isn't it. And symptoms people have are real. And I'm sick of having bloods tests that say something isn't right.
Et has normal life expectancy. That’s really annoyed me. It’s an illness caused by the over production of certain cells. Without those cells being suppressed just like leukaemia death would occur.
You are doing the right thing. You are arming yourself with information. I suggest you check out MPNvoice.org .Uk.
Also get a print out of your blood test results and query if any of the readings are out of the normal range. Good luck
If your Doc said that you cannot have a mpn when you are Jak2- then it is time to see a MPN specialist. Best to you in finding the information you seek.
It's wasn't the doctor. It was a call back from the cancer centre helpers I think. Don't know if they are nurses. I think support workers. Got my consultant appointment on the 29th June. This is for the results but I rang ahead just to see. My consultant knows of mpn voice. She wanted to give me a leaflet on mpns. I said I had joined a forum and she knew of this so hopefully she's not as ignorant.
The three most common driver mutations of the disease; JAK2 V617F, MPL 515L/K, and the calreticulin mutations are present in 90% of patients with myelofibrosis, for example. There are 10% that are triple-negative. They don't have one of these discernible mutations.
Hi and thanks for replies. It wasn't my consultant who relayed the result to me. I stupidly rang ahead of my appointment on 29th this month. When I rang I was told that they are very busy and then given another number to ring which I did. It was just two support workers answer phone and I left a message. I then got a call back from a man who told me jak2 was negative so that pretty much rules out any mpn. He said calr was not back but as I was jak2 it was highly unlikely I had any of the mpns
On my blood forms it says suspected essential thrombocythemia. I have given up faith in my hospital in this but I suppose I shouldn't have rang to ask and should have waited for my telephone appointment 29th.
Surely they should know updated diagnostic criteria in these things and its not my fault that et is a cancer now and dealt with at our clinical haematology at the Cancer centre. I feel like they feel I'm wasting their time maybe. I am venting because our nhs don't seem to know or understand mpns. We shouldn't have to ask to see mpn specialists if they are blood cancers. Each hospital should have someone that knows surely. Obviously the man who spoke to me doesn't know about them. It's so wrong. I'm sorry for venting folks. I feel like I will be fobbed off again with your platelets are high but it's just normal for you. There's nothing wrong. You just have health anxiety
Find out if your hospital has haematology nurses. To chat to. They are so good. Really listen and never hurry you. Even if they can't let you know what s going on they will offer support .I agree we shouldn't have to fight for things but Unfortunately WE DO .
I hope you can find the strength and energy to speak up for yourself
Thanks mostew. It makes me so angry that we do have to fight. I feel exhausted tbh. And we do have to know so much when they are the experts supposedly and have the duty of care.
The nurses are there for diagnosed people and I am undiagnosed anything so I would be wasting their time most likely. In fact I don't know if it was a nurse who told me jak2 negative means pretty much no mpn. Only 50/50 according to diagnostic criteria. It rules nothing out in my head unless they can see something else from my blood results. Time will tell thanks again for your input. X
Sorry to hear about the ongoing struggle. As you already know, being JAK2 negative does not mean you do not have a MPN. You can also have CALR or MPL or be triple negative. Some people with triple-negative may actually have a noncanonical mutation of one of the known driver mutations.
Ignorance about MPNs is quite common in the medical community. This includes hematology clinics. These are rare disorders and some simply lack the knowledge to give accurate information. This is why it is so important for us to educate ourselves. It is also important to consult with a MPN Specialist. Given what you have experienced, I would suggest that it is worth whatever transportation hassles are involved in getting to a MPN Specialist.
You should never regret calling for a report on your labs. You should also expect to get accurate feedback, but that may not always happen from some sources. I expect you will feel much less exhausted if you get to a MPN Specialist and stop trying to get MPN care from a source that does not have the capacity to give you the quality of care you need to have. A bit like trying to get blood out of a turnip.
As Churchill said "We will never surrender!" Keep advocating for the care you deserve until you receive it.
Just to confirm, I was triple negative, and had MDS-U and MF (healthy now after undergoing a SCT).Unfortunately you need to speak with specialists who understand what they’re talking about !
As others have said the JAK2 mutation is only present in roughly half of ET/MF patients. It would be fair to say that being clear of the JAK2 mutation 'Almost' rules out PRV as 95% of patients with PRV have the mutation, but it doesn't of course fully rule it out.
My experience since being diagnosed 9 years ago now is that you are fortunate if you happen up on someone who fully understands MPN's. GP's certainly don't from my experience and also seem reluctant to educate themselves either.
My consultant is great, and when he hasn't been sure he has reached out to Prof Harrison at Guys, my sister who has ET and more recently PRV has not been so lucky and struggled with her consultants.
That would make sense lynnieb. I had a diagnosis of thrombocytosis years ago. Of no known cause. They said it was just me and how I was made. Normal for me he said discharging me. Now the criteria has changed and after having some strange things happen I was sent for bloods and again my platelets are still high. Years ago I had asked if it was primary thrombocytosis and was not given an answer. I had chest xray and other tests and everything normal then. Just high platelets and now rolling on years (not had bloods done for some time by gp) they are still high. I think maybe I have et regardless but im scared they will didmiss again
Time will tell.
Thanks for the support everyone. I'm perhaps a bit anxious tbh. I don't know but my bloods are as they are and I don't know why.
Hopefully your consultant will have correct information & you can always ask to contact mpn specialist. My GPS let my blood tests continue as normal despite platelets rising since 2016. Still currently told me bloods were normal this year when I later discovered I had ET only by pressing the doctors for bone marrow test following a non healing shoulder injury. I then got hold of all my old blood results to see GPS ignored all the warning signs & flagged High markers . I really have no faith in GP surgeries & again had to fight 8 months to eventually see Haemotology. They have been good . Julia, Devon. Uk 👍
Strange you should say about shoulder. I hurt my shoulder in 2020 and still cannot get my coat on properly. Also hip same side keeps dropping. I have little faith in my gps. If I mention et as in 2009 and now they just shrug it off. And make me feel health anxious. In 2020 during lockdown I think I got covid early on. Then lots of strange things and never felt well since. I had what looking at pictures and symptoms was most likely a clot in my hand. I felt like I was dying tbh. My hand swelled like a balloon and was red hot and throbbing. I thought a spider bite because I felt so dizzy and sick and my head was hurting so much. My eyes went funny too. I managed it and took photos but then just got one thing after another. I also got what was video diagnosed as shingles again. Severe itching and rash. Breathlessness for no reason. Hands and feet itching and rashes. Tingling. Both arms rashes and itching. My chest hurt and both lungs as I thought at that time. Honestly just one thing after another.
I went to my gp eventually when they started seeing patients.
They sent me for bloods and my platelets were high again. Hence more bloods and me putting two and two together and again thinking mpn. My gp referred me eventually. Just hope I get to bottom of it all soon. I'm just so tired of it now. I just don't feel right. I tried to show my gp my hand but she wouldn't look at photos. The consultant did though. But of course we don't know if it was a clot. I would say it was.
Wow interesting too as all mine happened in lockdown . Did nothing about my bloods & took 8 months to get MRI scan on shoulder & still awaiting results as NHS now farm the readings out to radiology around World so god knows where mine is being checked. Absolutely sick of making complaints & chasing GPS . All my scans ordered last year were LOST at the surgery computer allegedly. It’s treat yourself it seems & now I am off Hydroxycarbamide that made me very Ill until they work out what next 🙈. Good Luck 👍
Hello I have been following the site for a few years but have not posted. First let me say this is an amazing group and I greatly appreciate all who post. I have learned an immense amount.
I am also Jak2 negative. My CBC's were elevated and noticed by my Hematologist in early 2020. As they increased I finally gave into a Phlebotomy. Numbers went down and I felt better but pushed to see an MPN and was on a long wait list. A few months later another phlebotomy. Meanwhile they repeated the Jak2 and added the Jak2 Exon 12, CALR and EPO.
My lab improved but I was finally able to get in with an MPN.( Well known at large teaching hospital) They went back reviewing my lab 5 years and decided on two things. They would order a sleep study and do further genetic testing. The sleep study came out marginal, possibly not enough to cause my elevated CBC. My lab pointed to PV with elevated HCT,HGB,RBC with normal platelets until Phlebotomy. The next test was the Heme- Stamp testing which is a more detailed genetic test. When that test came out all negative, the MPN explained I probably do not have an MPN. Due to this negative test both doctors felt no BMB was necessary.
I have continued to see my Hematologist who now monitors every 3 months. Oddly enough, my lab has been in a very close to normal range. I really don't have an answer. We will continue to monitor every three months for now.
Can I ask tailac why sleep studies? From what I read sleep is disturbed often due to pain maybe and people on meds for mpns but can sleep disturbance actually cause raised bloods as in platelets?
They have been trying to rule out PV. The MPN told me sleep apnea is often the cause for secondary Polythycemia. He felt this is the first test that should be done with elevated HCT,HGB,RBC as in my case.
That's interesting tailac. Thanks for replying. As far as I'm aware my red cells are ok. All within normal. Mine are white and platelets. Although white was ok on 4th tests I think.
I was monitored for a full year by a hematologist prior to seeing the MPN. In my case with the elevated HCT,HGB,and RBC they were looking for Polythycemia Vera. They now feel I have "secondary Polythycemia" due to all of the negative genetic testing. The hematologist still follows me but now only every 3 months.
I think my sister had that. Her platlets were raised and large red cells too. She has b12 anaemia. They did a bmb. As I say my red cells are ok as I know. Just platelets now. I've never had high red cells although once I think years ago hct was a little out of range but within range now. And my folic blood is 4 times what it was now. I said to the haematologist that I had read it can mask b12 anaemia but she said my b12 was too normal for that.
Its a minefield isn't it
I've just rechecked my results for red cells and everything is normal. My hct is about normal. Has been at highest 45 but down to 41 but still normal even at 45.
My platelets are not overly high but they are higher than the cut off. My whites have been high for numerous times (in fact most of the time since 2008 2009) but strangly went to normal on my last bloods but platelets still out of range. So really just platelets now.
I tested negative on Jak 2 and a few years later, I was tested again and I was positive. My VA Oncologist said it was completely normal for that to happen.
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