All new to me at the moment . Two weeks ago was told I have jak2 mutation. I’d never heard of it and so I googled it and since then have been in panic mode. I had a bad knee injury in Oct 2024 that gave me a calf clot. This has healed. I was told it was provoked. I was on Apixaban. I’ve been taken off Apixaban and put on aspirin and told to come back in six months. But I’ve been worried ever since being told . My platelets were 469 in Dec 25 then 453 in Jan 26 when they checked for jak2. They only told me about jak2 at my haematologist appointment in April 26 where I was expecting to be told I’m done now as my calf clot has healed . So now I’m totally thrown. I don’t know if I have anything more I’m assuming I will have Essential thrombocythemia ('ET')? all my bloods are normal apart from the platelets. Thanks for reading. god bless
Thank you for taking time to send your post into the forum
I’m so sorry to learn of your circumstance - my heart goes out to you
Its clear from what you’ve typed that your worried and that is very understandable.
I’m confident you will find the forum a place you can speak with others who have not dissimilar circumstance and i hope you are able to find comfort knowing you are not alone. Everyone here is supportive and will always respond when you reach out. That was my experience when i first posted on here after my diagnosis of Chronic lymphocytic leukaemia ('CLL') just over a year ago this month.
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Thank you both for replying. It’s all a bit raw at the moment. I’m holding on to they said come back in six months. I hope you are both well assuming you are both here for the same reasons. All the best
Hello there @Markd, welcome to the forum at this worrying time. I’m glad you found us as you are certainly not alone in surviving a blood clot nor subsequent diagnosis with a JAK2 gene mutation.
Just wanted to say I’m really glad you’ve recovered from the clot. Many years ago I had a heart attack caused by a clot so can perhaps appreciate how terrifying that has been in and of itself. The anxiety about blood cancer is very understandable. I’d say it would be stranger not to feel worried right now, but I hope that reduces soon.
In 2023 I was also diagnosed with the JAK2 gene mutation out of the blue. While I have learnt to never trust Dr Google since, I also read online back then what a JAK2 mutation typically indicates. In my case I went on to be diagnosed with Polycythaemia vera ('PV') which is closely related to Essential thrombocythemia ('ET') as they are both Myeloproliferative neoplasms ('MPN').
While you’re in this in-between place with a JAK2 mutation diagnosed but not yet an overall diagnosis I’m wary of sharing definitive information. Speaking from my experiences of tolerating the testing and diagnoses and their aftermath please be reassured that your testing seems to be typical.
Should your gene mutation go on to be related to Myeloproliferative neoplasms ('MPN') then please hold out hope. My own lovely haematologist reminds me that I can live into normal old age and likely pass away with Polycythaemia vera ('PV') rather than from it. I find this very comforting and am trying to get on with life.
I’d really suggest you speak to your specialists and gain clarity on what your overall diagnosis is so you can begin to research from reputable sources, like here. Once you’ve got a diagnosis we can suggest further readings that may help reassure you.
In the meantime though I’d say try to find some distracting activities as I know my mind raced nonstop after my JAK2 mutation diagnosis. I’d also say try to avoid googling or using AI as they tend to generalise which is not helpful with these individualised types of diagnoses.
Another thing you might like to do is call the BCUK nurses like @DuncanB and @GenesisDevice have suggested. The nurses are specialists in blood disorders and can help allay any concerns you might have with their expertise.
Do please let us know how it goes @Markd, and remember the forum is right here once you fully know what you’re contending with.
Thank you very much . So I presume if I stay like this with my platelets just above the magic 450 i may remain on aspirin is this what you guys have called watch and wait? I am assuming that this will eventually get worse and then i will officially be classified with one of these Myeloproliferative neoplasms ('MPN') cancers. One thing that does worry me is chemo.. thanks for the advice I hope I have not come here too soon then
I’d say, from my non-medical understanding, that I’ve never heard of a certain platelet number triggering different treatments for folks with JAK2 gene mutations. For me it’s been a case of all my blood cell numbers being checked at frequent complete blood counts (CBCs). In my case, and others around the forum diagnosed with Polycythaemia vera ('PV'), we check for our haematocrit staying below 45 % which means our blood is thinner and less at risk of clotting. Clotting is the main risk with Polycythaemia vera ('PV') and Essential thrombocythemia ('ET').
Due to my heart attack I was already taking daily asprin, which is definitely its own sort of treatment. I’ve also taken hydroxyurea in capsule form, a mild form of chemotherapy, since diagnosis with Polycythaemia vera ('PV') and I am not considered to have watch and wait treatment. I’ve not heard of folks with Myeloproliferative neoplasms ('MPN') being on watch and wait/active monitoring as we tend to go straight into treatment.
I think a lot of your very understandable queries should be answered by your specialists. What have they said about when you’ll hear more? I’d be pleasantly assertive about seeking answers from them sooner rather than later as you’ll be able to get on with learning more about your specific diagnosis that way.
I’d also say try not to think things will get worse. Polycythaemia vera ('PV'), for example, is considered a chronic type of blood cancer and tends to only slowly develop, if at all. Hence why it can be lived with into normal old age. Chronic blood disorders tend not to change much over time, whereas acute types need more immediate interventions. Again, this is from my non-medical understanding.
To reiterate as gently as I can, as my haematologist says, people with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and Essential thrombocythemia ('ET') can live into normal old age. I intend to do so! I hope you don’t have a blood disorder at all @Markd, but please try to hold onto some optimism. I think “cancer” can often be a scarier term than the reality of living with it.
I’d get onto your specialists as soon as you can to clarify your diagnosis. I’m sure the BCUK nurses can help too if you call them. Let us know how it goes please, I’ll keep an eye out.