Hello. Not sure if i should have continued on an existing thread or starting a new one. Really hard to to write as the keyboard hides the text and I can’t see what I sm writing
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Ah! I see the text now.
Got diagnosed Jak2 positive after an episode of amaurosis fugax. It was a long process, but here am I, 2 weeks after diagnosis. Will have a bone marrow biopsy on the 19th, don’t like the idea but will have to do it. Have had a liver CT scan but not sure why, apparently a ‘solid mass’. Next appointment not until 22/9, which is a while. My Dr classed me high risk 
At first I wasn’t worried, from things I read in the booklet such as “people live for decades” etc. But with time I really wonder if life will ever be normal again. I will need some treatment TBC. There is one that you take on Friday because you get the side effects on the weekend and will be ready for the work week. It really made me think of my priorities, at my age… ruin the weekend so that I can work???
To make things worse, a well meaning friend of mine keeps saying that she has read everything about Polycythaemia vera ('PV') (my dr suspects Polycythaemia vera ('PV') rather than Essential thrombocythemia ('ET'), pending marrow) and it is not cancer. Problem is, she is a retired civil servant, not a doctor! It slightly annoys me.
I am really well and ok with everything, but feel as if there is the equivalent of ‘an elephant in the room’ of my mind. I am 57 and live a quiet life. Whatever illness may come, I wouldn’t even have a bucket list, as everything I could wish for I already have. I just want to keep going for walks with my husband and enjoying his fabulous cooking with our 3 young adult children around.
Basically, I am fine, and happy, but there is this question mark about what the future will be like. I think this is normal, right?
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Hi @CKG
Welcome to the forum. I’m sorry to read about your diagnosis.
Rest assured you will find this a very supportive forum.
The wonderful @Duncan is well versed in Polycythaemia vera ('PV') having lived with it for a number of years.
There are also several forum members living with Essential thrombocythemia ('ET') who I’m sure will share experiences if that turns out to be your diagnosis.
Both Polycythaemia vera ('PV') and Essential thrombocythemia ('ET') are definitely classified as blood cancers.
They may not have been several years ago.
Important to listen to those who have knowledge especially your Haematology Team
The @BloodCancerUK-SupportTeam are a great source of advice as are Macmillan and Cancer Research UK.
Try to avoid random searches as what you will find is generic information and as we tend to say here on the forum that blood cancer is different for everyone.
Hope that helps and take care
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Thank you @DuncanB for the welcome and reassurance. I will definitely trust my haematologist, he has been great. Thank you
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My Haematology Team are also brilliant @CKG and it’s great to hear that you’re being well supported.
Like you no big bucket lists. Enjoy walks with my wife, enjoying her home baking and the simple things in life
I do most of the cooking at home. Find it very therapeutic
One thing I found really helpful since being diagnosed with Myelofibrosis is just to live in the present and enjoy each day.
There’s people here on the forum who have been living with blood cancer for years.
@Willow is 36 years post diagnosis and @Erica is 22 years post diagnosis.
Hope that helps give some reassurance 
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Hello there @CKG, welcome to the forum at this difficult time. I remember well how I felt when I also tested positive for the JAK2 gene mutation and read what it likely meant.
You’ve come to just the right place as dear @DuncanB says, and perhaps I can offer my non-medical understanding of Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and Essential thrombocythemia ('ET').
Unfortunately, Myeloproliferative neoplasms ('MPN') are indeed classed as a type of blood cancer according to this Cancer Research UK information. Personally I think this is helpful as it means those of us living with them can access more support, for example with employment and disability rights.
Perhaps your friend has read some generalised, out of date information, which is pretty easy to find online via Dr Google and AI. My advice is to only read official research from blood cancer and cancer organisations like Blood Cancer UK or MPNVoice.
I’ll hold back from sharing links to Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN') for now as there is still a chance that you’ll receive a totally different diagnosis. Please hold out hope that the JAK2 mutation is all you’ll be diagnosed with—believe it or not there have been a few forum members diagnosed with a non-cancer condition very similar to Polycythaemia vera ('PV') caused by other causes. At the same time I think having that information about JAK2 can help us mentally prepare ourselves.
Personally speaking, 3 years since diagnosis with a JAK2 gene mutation and consequently Polycythaemia vera ('PV'), I am told by my haematologist that I should live into normal old age and pass away from something other than Polycythaemia vera ('PV'). It’s that manageable!
So I’d say please bear that in mind and try not to let other people’s misunderstandings about what you’re contending with take over your thinking. It’s a stressful enough time as it is!
Once you know all your test results you’ll be able to read up on those and share firmer information with concerned loved ones, if you want to.
Do please keep us posted @CKG. If you have any queries do ask and I’m sure we can point you towards relevant information.
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And may I just add @CKG that I had to google amaurosis fugax and oh my that sounds terrifying! I’m so sorry you experienced that.
Perhaps that’s what made your doctor say you’re at “high risk” as I experienced a clotting event years ago which classifies me as being at high risk of further clotting. But again, we can live safely and normally with Myeloproliferative neoplasms ('MPN') as many of us around the forum show!
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Thank you @Duncan for sharing your experience and providing reassurance in so many levels.
You got me confused though, you mean I may not have an Myeloproliferative neoplasms ('MPN') after all? My haematologist even wrote to my gp, and gave me a letter for work informing them of my condition, that I may need time for appointments etc. Would he have done this if the test had been inconclusive?
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I almost didn’t pay attention to it at all, since there was no pain and it was all over so quickly! It was indeed dr Google who told me to contact a health provider “today”, it said. The NHS did take it seriously!
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Thank you. Live in the present is the best advice.
Wow @Willow and @Erica I wish you both all the best. Great examples you are.
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I am so sorry to have caused any confusion @CKG, as a forum member it’s not my place to say whether you will be diagnosed with one of the Myeloproliferative neoplasms ('MPN') or not.
What I meant was that speaking from experience of chatting with other forum members going through testing for Myeloproliferative neoplasms ('MPN'), I’ve been surprised that a few had typical markers for Myeloproliferative neoplasms ('MPN') but after exhaustive testing it ended up being a different non-cancer blood disorder called erythrocytosis.
As you say your haematologist has already given a loose diagnosis of Myeloproliferative neoplasms ('MPN') then I am really sorry but it sounds like they’re pretty sure, and will do tests to find out which type. In my case my overall diagnosis of Polycythaemia vera ('PV') was not confirmed until my bone marrow biopsy results came back. Absolutely trust your haematologist over me misunderstanding your comment!
Like I’ve said, those of us living with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and Essential thrombocythemia ('ET') can lead relatively normal long lives. I’ll share the Blood Cancer UK information about Myeloproliferative neoplasms ('MPN') where you’ll find further links: Myeloproliferative neoplasms | Blood Cancer UK
Hope that’s cleared things up @CKG and once again I’m sorry to read that you’ve received that diagnosis. The forum is here to support you as you receive finer details about which type it is, but please know you’re not alone here.
Oh and I’m very glad to read that the amaurosis fugax was painless!!! Thanks for sharing as you have @CKG, it’s really helpful to learn more about these dratted Myeloproliferative neoplasms ('MPN') and potential side effects.
Please keep us posted and do keep looking around the forum, perhaps for bone marrow biopsy tips.
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Hi @Duncan I read again the letter to the gp. It gives my JAK2 V617F + VAF number, Epo, LDH, ferritin, transferrin saturation; and full blood count results. It lists all the reasoning behind the diagnosis, and goes on to say “the features are more likely to be those of Polycythaemia vera ('PV') rather than Essential thrombocythemia ('ET') (…) nonetheless we would require a bone marrow to confirm the diagnosis”.
So although he comes across very confident about the diagnosis he does say it needs confirming. My initial understanding was that the BMB would confirm if it was Polycythaemia vera ('PV') or Essential thrombocythemia ('ET').
It is worth saying that for some reason I happened to have quite a few past full blood count results, since 2020, where you can see a real trend. This may have helped.
Anyway thank you for the wise and kind words, I will update when I know more.
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Ah okay so that’s the same gene mutation I have @CKG, the V617F variant of JAK2. Apparently it’s the most common in those of us with Myeloproliferative neoplasms ('MPN'), and something like 95 % of people with Polycythaemia vera ('PV') have a JAK2 mutation overall (see the diagnosis section): https://www.macmillan.org.uk/cancer-information-and-support/blood-cancer/polycythaemia-vera-pv
Funnily enough my diagnosis was a bit between Essential thrombocythemia ('ET') and Polycythaemia vera ('PV') as well, but they erred towards Polycythaemia vera ('PV'). Unlike you, my elevated blood cell numbers hadn’t been noticed in my annual blood tests—I’m very glad yours were! It’s not always such an exact science and more based on understanding our unique blood test results over time, from what my haematologist says. That helps me try to be a bit more flexible and patient with my test results.
Do keep us updated @CKG and please ask anything that comes up for you. You can search for specific topics using the search box at the top. If you have any medical queries the lovely Blood Cancer UK nurses are at the end of the phone, just give them a free call on 0808 2080 888.
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Hi all I noticed something new. I have had a few occurrences of cellulitis (sp?) lately which I had never had before. For the first two I thought it had been an insect bite but realise now 3 times the same thing and with none of them was there a creature in sight. I called 111 as my leg was very swollen and they asked if I had been told by my gp or haematologist that I had problems fighting infections, I had not. My white blood cells are well in range, but apparently it can be a thing that they are good in number but bad in quality.
I am VERY GOOD at this puzzle that I have to be prepared for the shape that will come and find a place for it so it gets detonated and does not trap me in, I feel with my health it is not working!
Anyway, anyone else having cellulitis out there?
This thing is keeping me awake (4:37 now) hope everyone else is enjoying a good night sleep.
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Hello again @CKG, interesting subject! I must admit that I wasn’t sure what you meant by cellulitis and went off to read up. I couldn’t find much around the forum, and Blood Cancer UK don’t seem to have shared any information about cellulitis.
Sounds like from calling NHS 111 that you were told the leg swelling could be due to infection? I’d really want to have this checked more thoroughly in person if I was experiencing this myself, living with Polycythaemia vera ('PV'). As I’m sure you know, blood clots are a risk to people living with Myeloproliferative neoplasms ('MPN'). I’d really urge you to have it checked if it’s still swollen now.
Will you let us know how you get on please @CKG. Maybe you’d like to speak with the Blood Cancer UK specialist nurses free on 0808 2080 888 for advice on what to do next about that swelling.
Hi @Duncan thank you for your reply.
I ended up speaking to the GP on the phone, sent him a couple of pictures and he said it was cellulitis. He prescribed me some antibiotics and the swelling has gone down considerably.
I have also emailed my specialist nurse letting her know about this, though I got an out of office reply, hopefully she will be back on Monday.
There seems to be something between MPNs and dry skin, and dry skin gets more easily broken, allowing bacteria to get through. Thick blood doesn’t get far enough near the skin to fight the infection, and that is how cellulitis happens. I’ve had it 3 times. Will let you know what the nurse says.
Thank you
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You’re very welcome @CKG. I’m very glad to read you’ve already tended to the swelling and it’s decreasing, a sign of the antibiotics working well I imagine. It’s great you passed it by your GP and were able to send photos, good stuff.
My haematologist is always keen to hear about any random ailments I have as, like you say, so many can be related to Myeloproliferative neoplasms ('MPN'). So I’d say, especially soon after diagnosis, to pass onto our haematologists any and all changing and new symptoms. Mine helped me sort out lifelong insomnia!
I’ve heard similarly about our skin becoming drier with Myeloproliferative neoplasms ('MPN'), and actually I finally had to figure out a moisturising routine or else mine now gets uncomfortably prickly in the sun since starting daily hydroxyurea. Currently dealing with slightly cracked skin in between my toes, which was never an issue before! So weird how our skin can change so much, but it could be worse.
I’ll look forward to hearing how you get on @CKG, do keep us posted.