Now part of the polycythaemia vera posse

[Duncan]

You’re most welcome @turan.simsek, a little kindness here goes a long way I find. Thank you too for yours, and your empathy.

I’m glad you’ve come back to the forum, it’s so helpful for there to be ‘young’ diagnosees here too as I get the impression that most are diagnosed with Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN') when older and many typical life events are often behind us then. Personally, I still feel like I have half my life ahead and don’t want to be held back by Polycythaemia vera ('PV')!

Like you say, it can be really helpful to know of others with a similar diagnosis, treatments, even outcomes after some time managing it like you. It’s still early days for me, coming up to 3 years since diagnosis, so I try to learn as much as I can from folks who have lived with Polycythaemia vera ('PV') for longer. You have already offered me reassurance, thank you.

Definitely agree about treatment consistency and how listening to our bodies can help. I just got over a basic cold and did not feel worried for once as I knew my vaccinations were up to date, I knew to check for fever, and trusted my immune system to fight it off if I rested well. It only lasted as long as a cold would for people without Polycythaemia vera ('PV') or a weakened immune system, so I was very pleased with my body!

Do please keep sharing your experiences @turan.simsek, I for one will look out for your posts. I’m also really interested in how treatments for Polycythaemia vera ('PV') differ around the world, so it’s really cool that you’re here to share how it’s going for you.

[CourtM]

Hi everyone,

Apparently I to am now apart of this posse, I was diagnosed with the Jak2 and Polycythaemia vera ('PV') about a month ago after developing cerebral venous sinus thrombosis with absolutely no reasons why. To say the last few months since I started getting headaches to being hospitalised and now to my diagnosis have been life altering, would be a bit of an understatement. I’m only 46 and otherwise very healthy, I would get a couple of head colds a year but I rarely even needed to go to the doctor, now I have Polycythemia.
I’m still in the can’t think about anything else phase, and also I’m not really liking my haematologist, so it’s been a lot. He’s very dismissive and said he has a plan for my treatment, but other than phlebotomy, I have no idea what that plan is. Anyway I am in the process of seeing a new Dr, but in the meantime this forum has been my lifeline for carrying on and also having information to tell my family. So I’m joining you from Australia, but I just want to say thank you to you all for your information, kindness and hope. I’m still oscillating between deeply depressed and calm and I’ve got this, but I keep coming back to all your words of support to each other and I know I’m going to be ok.

Thank you all so much!

[Duncan]

Hello there @CourtM, welcome to the forum and the Polycythaemia vera ('PV') posse, although I bet you never thought you’d ever need to find a place like this! I’m really sorry to read of your JAK2 and Polycythaemia vera ('PV') diagnoses and especially that thrombosis which sounds terrifying. Although you say you’ve got this, I just want to say it’s okay not to be okay too. Emotions relating to these sorts of diagnoses can understandably take time to settle, so in the meantime please be kind to yourself and perhaps expect moods to be all over the place.

In 2023 I was also diagnosed with a JAK2 gene mutation and subsequently Polycythaemia vera ('PV'). Like you I experienced a clotting event but mine was a heart attack many years ago. Some folks around the forum receive their Polycythaemia vera ('PV') diagnosis without experiencing a clotting event, and let’s just hope we don’t have any more, right?!

I’m really glad you found us and don’t want to bombard you, but I imagine you might like to read the great research about Polycythaemia vera ('PV') from Blood Cancer UK when you’re ready: Polycythaemia vera (PV) | Blood Cancer UK

Much like you I was a similar age, healthy, and I only went to the doctor for checkups of my heart health over the years prior to the shock of Polycythaemia vera ('Polycythaemia vera ('Polycythaemia vera ('Polycythaemia vera ('PV')')')'). I find it really helps to be on the same page as my specialist and actually I had to change my haematologist for uncannily similar reasons to you. Did yours tell you that Polycythaemia vera ('PV') is not a blood cancer, like mine?! That should have been when I decided to change, but I gave mine further opportunities to get it right before realising I’d never be able to trust his judgement again. My newer one is great and very caring and loves to tell me how well I’m doing despite the Polycythaemia vera ('PV'). Hopefully your new one will be better for you too

I’m really glad you’ve found the forum so helpful, it really is a rare place. I’m also outside the UK, in my case the West Coast of the US, and find this forum so incredibly supportive. May I ask what blood cancer healthcare is like where you are, do you have local or national blood cancer organisations? You’re not alone in being in Australia and using the forum. Seems like there are quite a few organisations dotted around the world but I note that they often focus on one subset of blood cancers, with Myeloproliferative neoplasms ('MPN') such as Polycythaemia vera ('PV') often omitted. Speaking of Myeloproliferative neoplasms ('MPN'), maybe you’d like to read the BCUK research about our family of blood cancers: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Really glad you found us here and please do not hesitate to ask anything that comes to mind as I’m sure someone will be able to empathise and share our own experiences. There are many lovely folks around the forum who live well with Myeloproliferative neoplasms ('MPN') like ours so I have no doubt you can find support here.

Do please keep us posted about how you get on @CourtM.

[CourtM]

Hi Duncan,

Thanks for the welcome, I’ve read through this whole thread of messages since my diagnosis, and your experiences with your old Haematologist does echo my current experiences. I’ve just come back from a phlebotomy session today and my interactions with my current haematology made me more certain of my decision to get a second opinion. He’s never actually said it’s “blood cancer” , so when I got my initial diagnosis and was whisked into a phlebotomist session, I was googling and found that piece of information out… cue an absolute melt down. I was then offered to see the clinical nurse, who offered me Valium instead of helping me with information I was looking for, she then said I haven’t been diagnosed yet, so she couldn’t say much… then I was booked in for a bone marrow biopsy which I’ve had 2wks ago, the day after that I had another phlebotomy session and the Dr said “there won’t be any change to your diagnosis, you have Polycythaemia vera ('PV') and we may need to give you a tablet and then you will try to live your life as normally as possible”. Today he told me I looked “happier”, I thought “thanks mate, I’ve got a full face of make up on (I’d come straight from work) and I’m planning on replacing you”, anyway I’m sure he’s a good doctor for someone, just not for me.

There are local Australian forums but for what ever reason, this forum felt like a better fit for me.

I’ve finally started to feel better from the CVST, my headaches are under control, I don’t feel sick, and knock wood… fatigue hasn’t set in. I’m trying to keep busy, keep moving my body and keep hydrated, and that’s all the biggest takeaway I have from my journey so far.

But I will keep you posted as I get more settled with my diagnosis, and especially see a new Haematologist… who my GP described as “lovely”. But thank you again, I really did read your experiences with yours and it made me think I needed to follow your lead!

Court

[Duncan]

Hello again @CourtM, hope your phlebotomy passed uneventfully. Do you get offered a treat after yours? I usually take myself for a fancy coffee after mine, although they’ve become very infrequent after nearly 3 years of treatment.

It really does sound like we’ve had similar experiences with our first haematologists. I’m sorry yours has not been very forthcoming with actual information about what you’ve been diagnosed with. I’m a little surprised to read they tried giving you Valium—accurate diagnosis information would be preferable, I’d say! Glad that you’re changing doctors, life is too short for shoddy cancer care!

From my understanding, Polycythaemia vera ('PV') was not considered a type of cancer until the early 2000s (2008 I believe) and I think there are just some doctors who trained before this and have never updated their thinking on Myeloproliferative neoplasms ('MPN'). As you likely read earlier in this thread, my first haematologist even tried to tell me that hydroxyurea is not chemotherapy, so it kind of amazes me that he is considered a specialist!

So glad to read that CVST is not bothering you now. My heart attack came and went a little confusingly out of nowhere and I now think the clot that caused it was likely an early sign of Polycythaemia vera ('PV'), my newer doctor says he thinks they could be linked too. I find it weird how we can function pretty normally despite the Polycythaemia vera ('PV') for so long. Also very glad we can lead relatively normal lives.

Just to add that you may be fortunate and not experience fatigue at all, not everyone around the forum does. I read that something like 80 % of us do experience fatigue, so it’s probably wise to prepare for it just in case. I really hope you get to avoid it, it really got me down at its worst.

One more point in case your doctor didn’t mention it but taking hydroxyurea can be a risk to our partners and especially if trying for children, so do bear that in mind if relevant.

Just waking up here so do please let us know if there’s other stuff my foggy brain hasn’t thought of that you’d like to clarify or check, this forum was so helpful when I was being fobbed off by my first specialist!

Glad you found us @CourtM!

[Duncan]

May I share some good news, just in time for my third anniversary of being diagnosed with Polycythaemia vera ('PV')?

Saw my lovely haematologist today and it was like he saved up a bunch of great “small changes” as he called them that actually mean so much. Well, they made me blub in my appointment and made him blush

I no longer need phlebotomy so the sessions booked in advance are now “free for others who need them.” As my CBC results have been so stable I only need my blood tested every 3 months now, more aligned with how it is around the UK I believe. He reminded me that my life expectancy is the same as someone living without Polycythaemia vera ('PV').

There’s never been any mention of active monitoring of Polycythaemia vera ('Polycythaemia vera ('PV')') for me, but I’m choosing to think of my treatment in that way from now—just with a bit of daily chemo added

Anyway, I’m looking forward to the year ahead, politely tolerating this unwanted companion in my genes! Feeling pleased that it’s controlled.

Gives me hope for others that you can also stabilise those pesky companions

[Willow]

Hello @Duncan and thank you for sharing your good news! It will be encouraging for others with Polycythaemia Vera. Thank you for all the support you give to us on this forum and for your wise and kind words. I always have mixed emotions when I reach another anniversary of my diagnosis. Thinking of you. Willow x

[Erica]

Oh @Duncan you’ll be making me blub too. What a way to start a Friday for me with some good news.

As we always say I think a celebration is in order and as @Willow says thanks so much for the way you support us all with such caring too.

Keep looking after yourself

[DuncanB]

Fantastic news @Duncan

Thank you for sharing.

I’m sure it will give everyone a lift.

Life will definitely change with bloods every 3 months. Less regimented by them for sure.

Happy days

[Duncan]

Aw thank you so much dear @Willow, @Erica and @DuncanB, such special messages from you all.

I know exactly what you mean about how these anniversaries can feel Willow and am surprised I’m feeling so optimistic! Perhaps there’s a psychological theory to explain it but my morning coffee has yet to kick in?!

I certainly didn’t want you to blub too Erica! But it’s very sweet that you totally get it, these moments of stability can feel so emotional can’t they? I can only support others here thanks to learning how from you

And thank you Duncan, I know you know how extreme all this can be so it means a lot to have your support in return. So true about the extra time that opens up with the lack of appointments!

Celebrations are definitely in order—my other half will hopefully take us for fancy brunch this weekend, maybe even at the Spanish place we love that reminds me of our first holiday together eating mounds of paella and manchego in Barcelona Now I’ve made myself hungry!

[Fernandorafolsmedina]

Hi ,I’m diagnosed also of Jak 2 positive.its really hard to accept to where I got this,just what others had posted in here,I’m experiencing all of that,what my problem is the continuos medication or bone marrow biopsy,it’s too hard for us here in the Phil’s to gather such amount ,it’s a rich sickness..

[Rammie18]

@Fernandorafolsmedina

If it’s any consolation once you’ve managed to control the levels elevating there is a very good chance of living life close to “normal”. A cancer diagnosis is always scary as too reading the potential side effects of treatment.

keep posting your fears and experiences as there are lots of us with the jak2 mutation and Polycythaemia vera ('PV') to share the journey with you

[Duncan]

Hello there @Fernandorafolsmedina, welcome to the forum. You’ve come to the right place to find others living with the JAK2 gene mutation and related blood disorders.

May I ask if you’ve been also been diagnosed with Polycythaemia vera ('PV')? If so, we can share relevant information for you if you’d like that.

Like dear @Rammie18 says, if you’ve been diagnosed with Polycythaemia vera ('PV') then our specialists tell us we can have a normal life expectancy if we have regular blood tests and follow treatment. Perhaps you could ask your haematologist for clarification about your diagnosis?

And just a guess but if Spanish is your mother tongue then do feel free to use that, we can always use Google Translate to check that we’re understanding one another properly. There might even be a blood cancer organisation in your home country, I know there’s a few in Spain, for example.

It is really hard to accept having a gene mutation like JAK2, but please remember it is nothing you personally have done that caused this mutation. My haematologist tells me it was likely a carcinogen I was exposed to in childhood that triggered the JAK2 mutation in me that led to Polycythaemia vera ('PV').

Hope that helps a little @Fernandorafolsmedina and do let us know how you get on.

[Dibbers]

Hi,

This is my first post…I found out this morning about my Polycythaemia vera ('PV') diagnosis. Still numb if I’m honest.

I’m trying not to panic or get caught up in a google rabbit hole… that never ends well. I’m looking forward to learning from the wisdom and experience of others, but that’s for tomorrow when I have the capacity to take it all in.

I’m definitely keen to educate myself on my treatment options, particularly given I have Crohns and arthritis too. I’d taken azathioprine for over a decade and had to stop due to cancer risk… the irony is not lost on me! I’ve been anticipating starting with methotrexate to manage the conditions but now not sure whether that will be problematic with the peginterferon alpha 2a that the haematologist has suggested. If anyone has knowledge to share, I would welcome it.

Keen also to reflect on whether venesection is something I should consider. I recognise this will likely lead to iron deficiency but given the meds offer their own side effects, would one be any better than the other. Lots to learn about and reflect on.

[Duncan]

Hello there @Dibbers, welcome to the forum. I’m really so sorry to read of that Polycythaemia vera ('PV') diagnosis. Feeling numb sounds about right from memories of my own diagnosis with it. Perhaps you might feel something like grief too, which can come up for people. See how you get on.

You’ve found just the right place. Despite Polycythaemia vera ('PV') being rare there seems to be many forum members living with it who comment around the forum, and this thread is full of us! So please try not to feel alone with that diagnosis.

Something my lovely haematologist tells me regularly, that I’d like to share with you, is that we should live into normal old age with Polycythaemia vera ('PV') and that it shouldn’t be what causes us to pass away. Research and decades of treating Polycythaemia vera ('PV') shows that it doesn’t shorten our lifespans. Good enough for me!

Take your time and when you’ve got some headspace maybe have a look at this great Blood Cancer UK information about Polycythaemia vera ('PV'): Polycythaemia vera (PV) | Blood Cancer UK

Polycythaemia vera ('PV') is closely related to Essential thrombocythemia ('ET') and other Myeloproliferative neoplasms ('MPN') like Myelofibrosis (‘MF’) so here’s further information about these: Myeloproliferative neoplasms | Blood Cancer UK

I see that you’ve been suggested to take peginterferon alfa-2a AKA Pegasys and I know of a lovely thread full of forum members who take this, but for Essential thrombocythemia ('ET'). Perhaps you’d like to see what they’ve shared, and do reach out using an @ before their username with any queries: ET diagnosis finally sinking in

I’m also sorry to read of the Crohn’s and arthritis you live with, I imagine that’s a lot to balance, and sadly far beyond my non-medical understanding. Your haematologist is always the best person to talk through how various medicines will interact. Always let them know of any other health concerns as you might be surprised by how many can affect others, speaking as someone with a few chronic health concerns.

If you have medical queries or need for further resources then do consider calling the lovely Blood Cancer UK nurses as they are experts in this. Their free number is 0808 2080 888.

For what it’s worth, I take daily aspirin and hydroxyurea rather than Pegasys and used to have very frequent venesections without becoming anaemic. I no longer need blood removed as my medicine alone stabilises my blood cell numbers. Living with Myeloproliferative neoplasms ('MPN') means we tend to have very frequent blood tests. Our various blood cells are kept a close eye on by our specialists and they can adapt our dosages and frequency of venesections as needed. So I’d say try not to let potential anaemia worry you, it’s easily treatable from what others around the forum have said.

Hope that’s not too much of a bombardment @Dibbers! Do let yourself feel it all and remember that this diagnosis doesn’t need to feel as bad as it seems. We can live with Polycythaemia vera ('PV') pretty normally. Please keep us posted about how you get on, there’s a lot to take in but it’ll become familiar soon enough. I’ll keep an eye out for your posts.

[Dibbers]

Thank you for such a kind and generous response @Duncan. I appreciate the signposting to other threads and information.

I’ve taken time to read a bunch today and feel a little less anxious now I understand things a little more. Can’t say I’m looking forward to the side effects of another medication - I’m already treated to the delights of the other condition’s symptoms and the wonders of the perimenopause! I can’t help but wonder what how naughty I must’ve been in a past life!

If I might ask, from your learning and experience, is there any chance that family members might be at risk. This is one of my biggest concerns. Google isn’t a source I’d like to rely on. I intend to ask my haematologist when I meet him next but I have been told that’s six weeks away and I’d like to be reassured before then.

I spoke to my employer today and their response was wonderful. I’d like to provide some more information and practical advice so that’s my next reading and research - to help guide family and colleagues so they don’t feel they have to tiptoe around me. That would drive me potty! I don’t let the other conditions get in the way of life, I don’t intend to let Polycythaemia vera ('PV') do that either… within reason, of course!

[Duncan]

Oh you’re very welcome @Dibbers, I remember the lovely greetings I received here and how they helped me feel far less alone with all this. Well done reading what you have. I was in a bit of a torpor for a few days until I could focus on reading. Sorry to read about that perimenopause on top of the Polycythaemia vera ('Polycythaemia vera ('PV')'), what a lot to juggle! I feel for you, having chronic health challenges is certainly like a box of unexpected delights

Perhaps you’re serious about the karma, but please don’t believe this is anything you’ve done. That was one of the only reliefs I found upon diagnosis, that it didn’t matter how healthy and active I’d been as the gene mutation was likely randomly triggered in childhood or adolescence, according to my haematologist.

So it’s funny you asked about family links as I happen to have a close relative who was diagnosed with Essential thrombocythemia ('ET'), very similar to Polycythaemia vera ('PV'). Again, my haematologist says Polycythaemia vera ('PV') is almost definitely not hereditary and can’t be passed on.

It’s apparently more likely environmental, for example from growing up around carcinogens. There’s a well-known cluster of people with Polycythaemia vera ('PV') somewhere in Pennsylvania, US due to carcinogens in their local industry I believe. Do ask your haematologist, it’s interesting to note their responses.

Yes don’t rely on Dr Google! At least not for up to date information. I find search engines and AI tend to generalise to the point of being too vague, which is its own sort of anxiety-provoking. If you ever have pressing medical queries and can’t email or call your specialist I think calling the Blood Cancer UK nurses will help. They really know their stuff and their free number is 0808 2080 888.

Must say, that is excellent about your employer being so wonderful! Really good news, one less thing to worry about. Not always a given according to some forum members. Something that can really help others get their heads round what we have to live with is offering them info to read in their own time. There’s so much specialised language and I think it can put people off a bit. I share the great Blood Cancer UK booklet with others which they can read online, download or request a printed copy from here Polycythaemia vera (PV) | Blood Cancer UK Shop

And yes, the tiptoeing… Haven’t quite yet figured out how to broach that with my loved ones who have withdrawn a bit since my diagnosis. I think for some, the big C is too much, so perhaps prepare yourself for others finding it difficult in many ways. Much like us, I’d say!

Keep us posted please @Dibbers and do show yourself some extra kindness right now.

[NinaSt]

Hello, glad to read here , I like how supportive you all are, thank you!

I had waited 2 months my interferon injections ( started in 2024), but they still haven’t became , so my hematologist said we should to take hydroxicarbamide.

[Duncan]

Hello there @NinaSt, so lovely to hear from you. I like your supportive comment, so I’d say that makes us all supportive!

Sorry to hear about the issues with interferon, I wonder if your pharmacists had problems with keeping it in stock like I’ve read other forum members mention? Interferon availability issues were mentioned a lot in this lovely supportive thread, although mostly in regards to Essential thrombocythemia ('ET'), which we know is closely related to Polycythaemia vera ('PV').

Have you started the hydroxyurea yet @NinaSt? I’ve taken it daily since diagnosis and many others here take it too, so I’m sure we can offer our experiences of hydroxyurea if you want any, just let us know.

Hope you are otherwise doing well 3 years after diagnosis, isn’t it amazing we can still be here a few years on and have all these treatment options?!

[NinaSt]

My hematologist said that they have some problems with acquisition , but reassured me that it will soon be available . After I had my blood test and see that my platelets had chanced , she decided to start hydroxicarbamide ( 1 capsule per day), I don’t know how it will works, but with interferon injections I had sometimes exhausting headaches ( to the point of nausea ) and should take painkillers. When I feel fatigue , try to relax at home or take a sleep break .

So grateful for everyone supporting response here!