Jak2 positive - PV Diagnosis - Still a little shocked

[Nixter]

Hi Everyone

Just been diagnosed with this yesterday. I’m 44 and had been having random symptoms that I had initially put down to various different things.
I thought the itching on my hands and feet was the fact we had just recently got a new puppy and I was allergic (although couldn’t understand why only this dog and not our other one). Or maybe allergic to my washing powder. Night sweats I simply put down to perimenopause as i’m probably around the right age for that. Dizzyness, well I am a migraine sufferer and my Dr thought that due to the hormonal changes my migraine symptoms had changed too. Bones in my fingers, one of my feet and legs - didnt understand why these were giving me bother as i hadn’t hurt them nor had i been doing strenous exercise.

November last year I lost all feeling in my left hand-side when i was out shopping with my daughter. I collapsed, was slurring my speech and had facial drooping. I was rushed to hospital and treated as if i was having a stroke. When the CT and MRI showed no evidence of a stroke, the consultant put it down to changes in my migraines due to hormones due to my age. He didn’t discharge me however, he wanted to get me on a good medication plan for this. However as the months went on he noticed a pattern in my bloods, that my platelets with increased and increasing each time, then my haemoglobin was increased too. He referred me to Haematology, I had my first appointment about 3 weeks ago, and yesterday got the diagnosis, and here i am.

I really don’t know how to feel, i’m still learning about the condition as it’s all new to me, and dealing with the shock that it’s something i will have for life. I have to have venesections every week to start with - tomorrow i’ve to go for my first where they will remove a pint of blood. I’ve also to take daily aspirin.

I am so glad i found this forum and hope to learn from others with this condition and hopefully make a few friends in a similar situation along the way.

[Duncan]

Hello there @Nixter, welcome to the forum and may I just say how sorry I am to read of your diagnosis with Polycythaemia vera ('PV'). I’m really glad you found us here. Shocking indeed.

Sounds like you’ve been tolerating many of the typical symptoms of Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and losing feeling like you describe must have been terrifying. Sounds like it’s been a relatively swift process from your first haematology appointment to diagnosis, which is not always the case from what other forum members have shared, so I’d say that might come to feel like a small kind of relief.

I’ll share here the Blood Cancer UK information about Polycythaemia vera ('PV') which I go back to a lot with my own diagnosis, it’s a great reference; Polycythaemia vera (PV) | Blood Cancer UK, and here’s some great Polycythaemia vera ('PV') info from Macmillan too; Polycythaemia vera (PV) | Macmillan Cancer Support

While Polycythaemia vera ('PV') is considered a rare type of blood cancer, there are many of us around the forum living well with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'), Essential Thrombocythaemia ('ET') and Myelofibrosis ('MF' or 'PMF'). Please do reach out to others as we’re a friendly bunch, just add an @ before someone’s username and they’ll receive a notification from you.

You’ll find a lot of empathy around the forum about tolerating the various symptoms we tend to experience, including skin issues, night sweats, migraines and so on. Isn’t it rubbish?!

Although I’m not a doctor, I’ve noticed that many forum members say once treatments have kicked in, like the venesections you’re starting tomorrow, the symptoms often tend to reduce. My haematologist said that as treatment took effect I’d likely experience fewer side effects, which has been the case especially with the disabling fatigue I felt.

I had weekly, then monthly phlebotomy to bring down my blood cell numbers quickly after diagnosis in 2023. This was alongside daily aspirin and hydroxyurea. It took about 2 years but my blood cell numbers stabilised and I no longer need blood removing as medicine is doing its job so well. So I’d say treatment as daunting as hydroxyurea has become pretty routine.

Perhaps you’d like to speak with the lovely Blood Cancer UK nurses about any medical queries? Their free number is 0808 2080 888 and if you leave a message you’ll receive a callback. You’ll see the nurses around the forum too, and we’re very lucky to have their expertise, do give them a call.

I wonder if you might find one of the Myeloproliferative neoplasms ('MPN') symptom trackers helpful? We can add our various symptoms into an app and it makes it easier to spot patterns and improvements. This one from MPNVoice is meant to be good: MPN | Sanius Health and here’s a website with a similar function: https://uk.mpn.your-symptom-questionnaire.com

I imagine that’s more than enough to be thinking about so soon after diagnosis, but please do ask anything that comes up and keep note of medical queries too to ask your haematologist.

I’d say try not to worry about taking it all in right now, there’s so much to learn and it’ll come to make more sense with time. For now please take care and make sure to let loved ones look after you at this difficult time. If you’d like to post around the forum about how you’re getting on you will find great support—you’re not alone with that rare diagnosis here @Nixter!

Please keep us posted about you get on, I’ll keep an eye out for your posts.

[Spangleystar]

Oh @Nixter that’s so much to process, your head must be spinning. Well done for finding us and reaching out, you will find fabulous support here. I have a different cancer, but as a woman 7 years older I wanted to share the thoughts I had reading your email for you to bear in mind as you go through your venesections.

If your previous symptoms such as night sweats don’t go away, get a hormone test. GPs don’t typically offer them - some just bang you on HRT, others tell you to ride it out! That said you can ask a GP for FSH/PSH/Progesterone/Testosterone tests (given all this is going on, they will likely do whatever you ask) but as soon as you hit 45 they won’t be allowed to book it on the system under NICE guidelines and will assume you are in clinical peri/menopause (this is what happened to me aged 49 - diagnosed 10 months later). Whether you decide to go on HRT is totally up to you, but at least you’ll know the root cause. HRT has been a game changer for my sleep. I was still having night-sweats even when I got into remission, my lovely patches sorted that and I haven’t had a painful migraine since starting it (sufferer since the age of 6!)

Keeping yourself as physically well as possible will help you through this patch. Allow the feelings to come and go like waves in the ocean. All feelings are valid. Breathe. Be kind to yourself. Remember we’re here for you xx

[Ceri_BloodCancerUK]

Hi @Nixter, welcome to the Forum, and I’m so sorry you’ve found your way here after such a long and frightening stretch. You’ll have (or have had) your first venesection today, so I hope it goes/went as smoothly as it could and that you’re taking it easy this evening?

You mentioned hoping to make friends with people in a similar situation. There’s a thread here, Polycythemia vera (PRV) any other young people?, where members diagnosed with Polycythaemia vera ('PV') at a younger age have been sharing their experiences, and it might be a good place to start. You might also like to read Alex’s story about living with PV, which covers his diagnosis and getting used to venesections.

I’m also going to tag @Rammie18 and @Mimi1, who have both shared their experience of Polycythaemia vera ('PV') on the Forum (Rammie & Mimi - only if you feel up to it, no pressure at all).

You can also speak to one of our nurses by calling 0808 2080 888. At the moment it’s a call back service, so leave your name, number and a short message and a nurse will ring you back within one working day. You can also email support@bloodcancer.org.uk.

Keep posting whenever you need to.

Take care,
Ceri - Blood Cancer UK

[Mimi1]

hi @Nixter - I’m so sorry for your diagnosis. I was very confused when my husband got diagnosed at 38, as we were told that it is mainly 60+ who get this. Anyway, he’s been having venesections for a couple of years and is now on interferon. Happy to answer any questions (as much as I can anyway) and also you are not alone!

[Lucky]

@Nixter Being diagnosed is a shock. From reading other people’s accounts of diagnosis it is clear to me that how one is told greatly affects how much of a shock it is and how one comes to terms with the diagnosis. In my case Polycythaemia vera ('PV') was put into context very well and I’m grateful for that. Hopefully your consultant was equally good.

Like you, I started with weekly venesections. Had some lovely conversations with the nurses over tea and biscuits while a pint was being taken.

Once used to the idea of having Polycythaemia vera ('PV') we discussed drug treatment. The treatments all helped with the symptoms (I’ve had three different treatments). Each has its own side effects but all were better than not having treatment, if you see what I mean.

My top tip for living with Polycythaemia vera ('PV') is to stay hydrated. If my urine isn’t clear I have a large mug of tea or water as soon as practical. If I’ve been cycling and sweating I make sure to rehydrate straight away.

I am hugely grateful that it isn’t worse and that I live in a country where I’ve not only been diagnosed but that my treatment is free.

[Nixter]

Hi @Duncan

Thank you so much for your response, and the very helpful links.

Yes I must admit i’m very grateful for the speedy response by my haematology team.

Did you find that with the weekly, then monthly phlebotomy that you started to get less symptoms as time went on? Do you have any side effects from the hydroxyurea?

I went for my first venesection on Friday there and the whole process was made easier by the lovely nurses. I have to go every Friday to start with. Friday afterwards I felt horrendously tired for the rest of the day, however yesterday and today i’ve not been as tired. I’ll keep track of my symptoms though.

[Nixter]

@Spangleystar Thanks! Yes I think I will reach out to my GP and ask for a hormone test, just to be sure. I’ll need to get my skates on though and do it before I turn 45 in December. That is great about the migraines, like you I have been a sufferer since a young age - If memory serves me correct around 9.

@Ceri_BloodCancerUK Thank you! Yes the venesection went smoothly and the nurses were lovely. Just really tired afterwards, so the rest of the day was a write off. Thank you for the useful links

@Mimi1 Thank you! How has your husband been getting on with the venesections and the interferon, does he get any side effects from the meds?

@Lucky Thank you, yes my consultant was very good, and the lovely nurses at my venesection were faboulous and also answered many of my questions. The tea and biscuits were a lovely bonus of the treatment. Which symptoms did you get with the drugs? Ah noted, I really should drink more water anyway. Yes I feel very grateful that this condition is manageable.

xxx

[Lucky]

@Nixter Phew, very glad to read that your consultant is good. Most are, but one does read of the occasional shocker.

To answer your question, I started on hydroxycarbamide. Got on well with it, found I had more energy (which is highly unusual) but had to stop due to lots of skin rashes. They took a long time to get rid of. Moved onto Pegasys injections (alpha interferon). This too worked well except that, until I got used to it, I would get depression. It wasn’t the same as normal depression, where negative thoughts keep going round your head, but was different and very clearly drug-related. I was able to largely ignore it, focus on all the good things and get through it. Unfortunately my blood test readings for ALT eventually went up so this had to stop. I’m now on Ruxolitinib. This works well. I have a bit more energy. Mild constipation seems to be the worst side effect - which is very trivial indeed.

[Mimi1]

venesections have caused severe iron deficiency, which is why he started interferon. he’s doing ok with the side effects, they’re not pleasant but very manageable.

[Ceri_BloodCancerUK]

Thanks @Mimi1 for sharing how your husband has got on, and I’m glad the side effects are manageable for him.

@Nixter, iron levels are something quite a few members with Polycythaemia vera have talked about, and everyone’s experience is a bit different. If you’re curious, there are a couple of threads where people have shared how it’s gone for them: Venesection and ferritin and Iron levels with polycythaemia vera. It might also be worth jotting down any questions about iron to ask your team at your next venesection.

Take care,
Ceri - Blood Cancer UK Support Services

[Duncan]

You’re very welcome, and apologies for my tardy reply @Nixter, just getting over my first case of Covid-19—what a waste of time that was! I see you’ve had such lovely responses from others and great tips.

Hard to say whether phlebotomy caused or reduced symptoms as I weirdly didn’t have any typical Polycythaemia vera ('PV') symptoms before diagnosis. Irregularities were noticed in my annual blood tests, which then led to all the other testing I imagine is still very raw for you right now. I now realise how fortunate I was and feel so bad for others tolerating so much even before diagnosis.

I did find on phlebotomy days, especially once they became monthly, that I’d often have a bounce in energy later on. Have you been given the great tip to drink loads of water the day before and the morning of phlebotomies? I was told by a lovely phlebotomist that it helps plump up our veins and thins the blood, making the phlebotomy easier. It really helped mine pass more swiftly, usually a pint would drain in 15 minutes!

I started taking daily hydroxyurea the same week I was diagnosed and had my first phlebotomy. Because I had no Polycythaemia vera ('PV') symptoms, I attribute to all the symptoms I did experience, namely the vile fatigue and brain fog, to starting the hydroxyurea.

It’s tricky to describe side effects to hydroxyurea. My first, rubbish haematologist told me that the fatigue I felt was “deconditioning” due to becoming unfit, which was nonsense as I hiked right up to starting hydroxyurea and only stopped because it caused immediate disabling fatigue for me. I simply hadn’t had time to become deconditioned.

Hydroxyurea’s main side effect is how it affects my formerly oily skin. I now have much drier skin and need to do a whole moisturising and high SPF sun lotion routine or else I get really ashy and sunlight makes my skin feel uncomfortable. I’ve been fortunate not to notice any hair thinning, which can happen with hydroxyurea. As I’m not planning on having children I didn’t care that hydroxyurea affects fertility, but that might be something to bear in mind. I’ve gone off alcohol as it makes me feel nauseous now. Oh and my nails have changed a little, with barely noticeable lines along their lengths.

I always used to go for a coffee or treat after visiting the hospital for phlebotomy, and I trust you are being especially kind to yourself right now.

Hope that helps a little @Nixter, and don’t forget to treat yourself for tolerating all this. Please keep us posted.

[Nixter]

@Lucky Glad you have found something that is working well and giving you a bit more energy.

[Nixter]

@Mimi1 Ah, do you know Iron deficiency is something I hadn’t really though about much - no side effects must be pleasant, however glad they are manageable for him

[Nixter]

@Ceri_BloodCancerUK Thanks Ceri, Iron levels were not something I had thought about really. Thanks for sharing the threads. The info and support i’ve received so far on the forum has been amazing. Yes i’m taking a list of questions with me on Friday to ask the team. Thanks again

[Nixter]

@Duncan I’m sorry you had Covid! Yes i’m so grateful for all of the lovely responses from others, and the many great tips. Yes I have been advised to increase my water intake, which i have been trying to do generally anyway, but now even more reason to do so.

I’m sorry you are having side effects from the Hydroxyurea - I’ll need to keep that in mind if I am put on that and up my moisturising game. As for fertility, I have no plans in having any more children, my 2 are 18 and 25 now.

Interesting about going off alcohol. That was actually something that I was going to ask about. Is it ok to drink alcohol? I would normally have a bottle of wine on the weekend but now i’m worried to - how have peoples experiences with Polycythaemia vera ('PV') and alcohol?

Thank you and yes it does help to have lovely comments and advice. Although it’s bad luck that we are all suffering these conditions, it’s so nice to find a community to share experiences and get advice and tips

[Duncan]

Aww that’s so kind of you @Nixter, I’m well on the mend now but would never want to experience Covid-19 again, and certainly not without Paxlovid to minimise it

You’re so right about the lovely advice around the forum, and I just wanted to shout out what dear @Lucky shared about having tried the main 3 treatments for Polycythaemia vera ('Polycythaemia vera ('PV')'), really helpful to know your personal experiences of them as ever Lucky—you must be quite the case study for your haematologist?! Glad to read you have a bit more energy, I’ll keep my fingers crossed that improves even more

I still feel really lucky to have found it here after my diagnosis, and it’s great that we’re all here now. The more the merrier! It does still surprise me a little that for such rare illnesses, there are so many folks here on the forum who live with Myeloproliferative neoplasms ('MPN'). We’ve got many lovely community members who have lived with these blood disorders for many years, which really heartens me.

Glad to read you’ve been recommended to keep hydrated. I just keep a bottle of water nearby and take one with me when I’m pottering about. Such a great excuse to stop by at cafés too, must keep hydrated!

As for alcohol, I was not a big drinker before but would fancy a pint now and then or fancy cocktails at special times of year. If I take a sip now it just tastes wrong and disagrees with my stomach. From my non-medical understanding, any alcohol is a potential carcinogen. Many common things are carcinogens, like bacon and PFAS, and so I’d say many carcinogens are hard to avoid entirely.

My haematologist tells me that the JAK2 gene mutation I have, that likely caused Polycythaemia vera ('PV'), had been triggered in childhood as it takes so long for a JAK2 mutation to change how our bodies produce blood cells. I was told that although I was considered young at diagnosis, it had still taken decades for the gene mutation to take effect. So it probably wasn’t alcohol in adulthood that caused my Polycythaemia vera ('PV'), as far as I understand it, but maybe adults smoking around me in childhood. I’d ask your haematologist to see what they say, but you would not be alone in having a drink now and then as I know many other forum members mention doing likewise.

Do keep looking around the forum @Nixter as you’ll find many interesting threads relating to all your pertinent questions. You may find people living with Essential Thrombocythaemia ('ET') have shared a lot of relevant stuff too. Those links dear @Ceri_BloodCancerUK shared above are great examples of how we can find info about Polycythaemia vera ('PV') here.

On Fridays we have a great jukebox where we share music, and monthly there’s a movie club too, keep your eyes peeled if they’re your sort of thing!

[Jonpd]

@Nixter @Duncan following my diagnosis with Polycythaemia vera ('PV') in 1999, my alcohol intake continued as it had prior to diagnosis although I was never a big drinker.

When the Polycythaemia vera ('PV') progressed to Myelofibrosis ('MF' or 'PMF') in 2023 I could not tolerate alcohol, with the treatment I have had I am able to drink alcohol again but at a very much lower level.

I think the recommendation is not to drink more than the recommended units.

@Duncan good to hear the covid recovery is going well

[Nixter]

@Duncan Oh really? That is interesting about the mutation most likely to being triggered in childhood. I think I just assumed it happened when my symptoms started. I too grew up around a family who smoked, up until my teens where my parents gave up.
Friday Jukebox and monthly movie club sounds fab!

@Jonpd Thanks for the advice. I’m not a massive drinker, however i’m finding i’m just far too tired at present to be bothered opening a bottle. So I think i’ll probably end up not drinking very much anyway going forward. How are have you found having Polycythaemia vera ('PV') over the years and have your symptoms changed much with the Myelofibrosis ('MF' or 'PMF') diagnosis.

[Nixter]

@Duncan That’s good you got paxlovid to minimise your symptoms. Something i’ve also not thought much about - I suppose now with a Polycythaemia vera ('PV') diagnosis i’m more at risk of infection?