Polycythemia Jak2 negative

[Nozboz]

Hi all

I hope you all had a good Xmas so far and I wish you all a Happy New Year

I had my results from the bone marrow biopsy last week and it was confirmed that there were no signs of leukaemia which was a great result. My consultant was concerned with the high level of red blood cells in my bone marrow for someone of my age however he is awaiting more blood test results. He has confirmed that I am actually only one in a million of those who suffer from my form of Jak2 so its very rare.

I definitely am a lot happier now I have moved consultants and he is very knowledgeable around Polycythemeia. He has stated that he wants me to have a CT Scan next which he has organised for the New Year. The only medication I am required to take is an aspirin a day and my Venussections will be increased until they are happy that my readings are dropping as at the moment they are quite high all the time. 0.53

There was a lot more to take in on the day so I wish I recorded it but the good news is that he wants to keep me as a patient and as soon as there are more available tests he will be doing them on me.

Cheers

Noel

[bordeauxgirl]

congrats after the good results

[tracey1003]

Thats wonderful i am also pv jak2 positive and the same treatment as you it gets better as you go along and start to understand everything lots of strength and hugs

[mark382]

I have pv and am JAK 2 negative. My only treatment like you is an aspirin a day and venesections. I was diagnosed 8 years ago. Still have 3 or 4 monthly appointments. Venesections are not as often now - 2 or 3 a year now all is under control. Glad you found a good haematologist.

[JediReject]

Good news there Noel. . Stay positive. Sounds like you got a 'Gem of a Hem' there which can be half the battle and make a huge difference to your overall experience and subsequent treatments. These are relatively rare conditions.

Happy New Year to you also.

Cheers Chris

[Mazcd Partner MPNVoice]

Hello Noel, what marvellous news, you must be so relieved to know that you haven't got leukaemia. Your haematologist sounds great, as Chris says, it makes such a difference when you have a lot of confidence in your haematologist. Let us know how you get on. Best wishes, Maz x

[lizzziep]

Good news!

[nivana]

So pleased for you - relax now and enjoy the New Year festivities.

[Mckenzie07]

I would like to know more about what you find out with your condition. I'm jak2 negative also. I have had a bone marrow biopsy and they classified me as having secondary polycythemia. I take aspirin and have occasional phlebotomies to manage mine. I have had this since my late teens I am now 40. Good luck on your test! I hope they figure something out.

[Litefootes]

Congratulations! Knowledge is power. I am PV JAK2 neg as well, and have been 12 years now. Sure helps to have a hematologist that can/will relate to you, understand, have knowledge of what you are dealing with. Good luck!

Carol

[DoubtingT]

Firstly, Why do people who are Jak2 + persist in responding to a discussion specifically targeted at Jak2-ve sufferers ? it only confuses people ! Secondly I am picking up that it depends solely on your consultant as to whether your classified SP or PV ! after you have been found to be mutation free; seeing as these are two similar but totally different conditions, what is the DEFINITIVE test to determine PV ?

[Tico in reply to DoubtingT]

Hi, in response to your reply to nozboz regarding people who are jak2 positive responding to people who are jak2-ve is that a lot of the symptoms suffered by pv sufferers & mpn's in general are similar. Also people like tn be supportive of each other regardless. Just before xmas i posted a question specifically targeted to ladies of a certain age with an mpn regarding bleeding and a subsequent intimate biopsy i underwent. Thankfully i was given the all clear early in the new year and even though i wasn't unduly concerned the response both on the forum & by private messages was very much appreciated, and even though it was directed to ladies,one gentleman did respond! In reply to your question about diagnosing mpns,your haemo will only do at when other conditions have been ruled out and by following the criteria set out by WHO,the world health organization. Atb,tina.🤗

[Cali-Med in reply to DoubtingT]

What is sp? I’m triple neg. I have high red blood cell count High hemoglobin high hemocrate high monocytes. I have been diagnosed primary pv.

[Confusedatpolycythem in reply to Cali-Med]

Hi Cali - what is the triple negative? I know of the JAK2 and Exon 12 mutation. What is the third mutation called?

[DoubtingT]

Hi Tico, Unless people start being specific we will never get to understand what the drivers are for each MPN; I joined this site because I have found the Facebook sites are often swamped with 1) people who think the Medical profession always gets it right, 2) People who think it is wrong to be your own advocate/researcher 3) People who are quite happy to tell me I am wrong to question the diagnosis my specialist has labeled me with. I am a professionally who has been trained to think outside the box; but I know from personnel experience that most Medical Professionals are experts in their specialty and tend to diagnose within their knowledge base, this tunnel vision can be dangerous and I am aware of numerous instances where this has led to misdiagnosis. So please if we are serious about finding the causes of a specific and rare condition ( in this case Trip-neg Polycythemia) can we please stop muddying the waters with irreverent information.

[Tico in reply to DoubtingT]

Hi, i agree 100% with the points you make,sadly i know from bitter experience that the medical profession certainly don't always get it right, i believe my mum would still be alive today if that was the case and my dad misdiagnosed with brain cancer instead of a massive stroke so the appropriate treatment delayed leaving him permentantly disabled before a second one killed him. I myself and others in my family and circle of friends have had some experience of being misdiagnosed so to say i am very tentative of doctors is an understatement. They certainly don't get it right always! I also agree you have every right to do your own research and be your own advocate, my consultant certainly knows i am my own advocate! And lastly you are certainly not wrong in questioning a diagnosis and believe everyone as the right to a second opinion. The point i was making in reply to you,is some people on the forum just need moral support regardless of their mpn or whether they have a mutation or they are triple neg. Personally i am easy going and strong willed and post to hear others experiences but we must understand their are people on the forum who be it first time posters who are newly diagosed who just need a bit of reassurance when just getting their head around it all and are worried about what lies ahead for them. Or people anxious in general. When diagnosed with an mpn the medication a lot of the time is the same or similar regardless. And as regards to facebook,i have never or would ever wish to go on it as i believe a lot of trouble and nonsense happens on social media. It took me sometime to join this forum! In regards to your own situation i would ask to be referred to a consultant who specializes in mpn's as not all haemotologists do. That is your right. I wish you all the best and get the answer you are seeking. Tina🤗

[DoubtingT]

Tina, would you put up with it if you were discussing Religion with a group of friends at a party when some complete stranger BUTTS in and tries to change the topic to Politics ?

[Cali-Med in reply to DoubtingT]

Did you find out anything about triple negative? I have high red blood in all areas as well as high monocytes?