Question: Living with / Treatment Polycythemia Vera (PV)

[KevM]

Hi everyone, I am happy to see that there is a community of people with the same rare condition, as even the GP can seem confused about what it is.

I’m 42 and recently diagnosed with Polycythaemia vera (PV), it explained a lot in regard to my persistent health issues, and it’s a bitter-sweet thing. I am happy to finally know what is wrong with me, but I wasn’t expecting a type of blood cancer. Then again, from what I understand, ‘if you could pick a cancer and had to pick one, Polycythaemia vera (PV) is not so bad as some’.

I’ve been having weekly venesections to get my haematocrit down to 0.45- and I’ve become very anaemic (Ferritin 6 ug/L), they say treatment has been working great so, I feel lucky about that. I am nearly at the haematocrit 0.45 mark (one or two more weeks) and I’ve been told to go to an every 14 day venesection.

Going over some of the posts here, I see some people are on medication, seemingly with some bad side effects. And I was hoping some of you could share some of your experience with me.

If you’re being treated with Venesections, how often do you need to go now? How did it all go for you? How are you about it emotionally?

Is it possible to have treatments beyond every month, or every month and a half? What are your experiences?

Despite my optimism, I am not sure what to expect really. I had plans to go travelling for a long period of time, and I have some ideas on how to do this with Polycythaemia vera (PV). But there isn’t a lot of concrete information out there and neither am I interested in going through Facebook for obvious reasons.

Thank you for reading and I look forward to your responses.

[Duncan]

Hello there @KevM, welcome to the forum that I bet you never thought you’d need to check out! I’m really sorry to read of your diagnosis. It sounds like you’re trying to make sense of it and planning ahead which will no doubt help in the long-term.

Having been diagnosed with Polycythaemia vera (PV) myself, although I’m not a doctor I think at this early stage you’re wise not to expect anything except a sort of flux in yourself and treatments as you adapt to it all.

I also had weekly phlebotomy after diagnosis last year to bring my haematocrit down to 45 %, and then monthly once it stabilised, and actually now it’s about every 3 months, as needed. My haematologist says he aims to free me from venesections and rely on just the daily aspirin and hydroxyurea to thin my blood and disrupt the JAK2 gene mutation from doing its proliferating thing.

Have to say, I was pretty squeamish about all the needlework initially, but I desensitised fast—when you’re getting blood drawn every week for weeks on end it does tend to become almost routine! There’s still a slight aspect of body horror in it for me. However, I’ve come to feel fine about having phlebotomy and actually look forward to seeing my lovely phlebotomists in hospital when I need to go in as I get to ask them lots of questions!

We’re all individual and so treatments should be matched to your ongoing haematocrit levels, based on regular blood tests to check its viscosity. Our haematologists also base our treatments on how high risk we are classed, which I believe is whether we’ve had a clotting event prior to diagnosis and whether we’re classed as “young” (which seems to be younger than 60).

While it seems I’ve had an easier time of it than many with Polycythaemia vera (PV) and other MPNs, I’d say whichever treatments we have will likely have side effects and that cancer-related fatigue is most common—something like 80 % of us will experience CRF to some degree, according to research. I started on hydroxyurea and it seems to suit me well after a year, although it has made my skin dry out and photosensitive. I have a whole SPF moisturising regime now which helps. Others might take another medicine like interferon if they don’t get on with hydroxyurea (or refuse to take chemotherapy), which have other side effects, and requires injecting yourself regularly.

While I was hesitant to take hydroxyurea, being that it’s scary-sounding chemotherapy, my haematologist reassured me that it’s been used for decades by young people with sickle cell disease and research shows they don’t develop a greater incidence of other cancers, so that’s good enough for me! If hydroxyurea stops working so well for me in the future then I’ll change to another. We’re fortunate to have many medicines that disrupt the blood overproduction inherent in Polycythaemia vera (PV). Maybe have a read of the great Blood Cancer UK information about Polycythaemia vera (PV) if you haven’t already: Polycythaemia vera (PV) | Blood Cancer UK

Hope that helps! Sorry to go on a bit. I’m intrigued by your plans to travel with Polycythaemia vera (PV), but do wonder how your energy levels will tolerate it, certainly after starting to take cytoreductive medicine. Where might your travels take you? So nosy!

Do please keep us posted @KevM, now that you’re part of the Polycythaemia vera (PV) family!

[KevM]

Hi @Duncan, I appreciate you taking the time to message me, and it’s by no means going on a bit.

Yeah, I guess I have to wait and see, during my diagnosis consultancy the doctor was discussing the options with me and said that they want to do the bloodletting only as I seem to take well to it. The downside is that I am now very anaemic, which is exactly what is supposed to happen, but I am struggling a bit as the treatment continues. It’s making it hard for me to work with a shoddy memory.

Prior to my diagnosis I was doing a lot of reading on blood charts, what everything means and what to look out for. So far my kidney data looks good, everything is within normal values, nothing too high or too low.

As for the needle work, unluckily I had an accident the year prior, abroad, had my femur broken in 4 places and I saw a lot of needles. Thankfully, already immune to the procedure and happy it’s simple.

The travelling, well due to lack of payment, from insurance, on the last mentioned accident it will take a bit longer to realize, but I wanted to go sailing. English southern coast, Europe, Mediterranean. Despite it sounding a little further off at the moment, I hope to make it work regardless, but it will be at least a couple of years away.

Maybe even get my partner to be trained to do the Venesections on the go, haha!

Life goes on, and so do I, but like you said, I first have to wait and see where this takes me.

Thank you Duncan, besides being kind and helpful you made me feel less alone too, which is nice .

[Duncan]

Oh you’re most welcome @KevM! I’m really glad you found the forum, I hope it comes to feel as helpful for you as it does for me.

I’ll respond more later, just got to dash for an appointment (thankfully non-medical for a change!).

[Erica]

Hi @KevM I am so glad that you have found our forum family, welcome.
@Duncan has given 2 replies that are far better than I could.
I have another blood cancer, but I think that many of us share similar fears, thoughts, emotions and practicalities.
Some of us share symptoms especially fatigue.
As for your great holiday plans perhaps your medical team are best placed as they know you best.
Perhaps suitable insurance is another thing to consider.
Look after yourself and please do keep posting

[Duncan]

Hello again @KevM, I’m so chuffed about you feeling less alone with all this. It really can feel like we’re the only people on earth with these rare blood disorders, especially when even our doctors sometimes haven’t even heard of them! Really glad you have optimism, and that you’re happy to know what you’re dealing with. This should hopefully stand you in good stead during the not-so optimistic moments, which I’d say we likely all feel at times.

Sounds like you’re not taking any medicine and so far the venesections are doing well. It’s great that your blood cell numbers are within their normal ranges—this can be an ongoing quest for some folks here.

The anaemia you mention also seems to be a frequent side effect for Myeloproliferative neoplasms (MPN) survivors unfortunately, and a tricky balance. Too low and it causes its own set of physical challenges, too high and it can be a sign of too much blood, or at least from my non-medical perspective. I sometimes think of living with Polycythaemia vera (PV) as a bit like Goldilocks trying to get things just right!

Do tell your specialists about how your memory is being affected, it might not just be due to low iron/ferritin, but other Myeloproliferative neoplasms (MPN) survivors here occasionally have iron supplementation prescribed. Be wary of iron in foods and supplements. I take an iron-free multivitamin approved by my haematologist.

It’s great you are fine with all the needling as it’s the main medical intervention we face. Regarding phlebotomy, if you don’t already, drinking lots of water the day prior will help hydrate your blood and plump up your veins and make it drain more easily. Keeping hydrated is meant to be generally a good idea. My last phlebotomy passed in less than 10 minutes! Personal record

Your travel plans sound incredible and something amazing to look forward to. What a lovely adventure to imagine and plan, especially after all this health-related malarkey. So sorry to read of your accident abroad. Like our dear guiding light @Erica says, health insurance might need consideration as folks with these disorders seem to need specialist insurance. Have a look around the forum as there’s a few threads mentioning health insurers who deal with blood cancers.

The idea of self-phlebotomising has crossed my own mind too (don’t tell me off, @Erica!!!) as it was costing me $300+ each time with my previous health insurance here in California! Thankfully it’s now covered and ‘free’, but the expense of such an old-fashioned, literally mediaeval intervention was shocking to me. It’s times like that when I miss the NHS most. Something I do now when I’m venturing a bit further afield is making sure I know where the nearest hospital is, just in case.

I hope it feels like you have some kind of treatment plan. My first haematologist forgot to share mine, amongst other failings. Do you think you might take hydroxyurea or interferon (or indeed other medicine) if your doctor suggests it? How about aspirin to thin your blood?

Anyway, I’ve gone on again! Glad you found the forum @KevM, I’ll look forward to hearing more about how you get on.

[Liz59]

KevM I was treated with Hydrea originally which due to side effects was stopped. I am now on Jakavi only two weeks but so far so good. Hopefully you will soon get sorted with a treatment plan. Venesections never bothered me either, have been told I have beautiful veins. Your travel plans of sailing sounds wonderful. Hope you find this forum as welcoming and helpful as I have . Best wishes. Liz59

[DougyW]

Welcome to the forum Kev. I get that this could be a confusing and scary time for you. I think we are on the cusp of a greater understanding of our condition with new treatment options/ approaches coming along. Personally, after 2 years of venesection I am on Pegulated Interferon. I suggest reading what yiu can find and staying in touch with people who understand what you are going through.
I fond this forum to be extremely helpful. I also joined Myeloproliferative neoplasms (MPN) voice on Health Unlocked, which provides an international perspective.

[KevM]

Thank you for the welcome @Erica, @Duncan, @Liz59 and @DougyW. The organization and forum have already done a lot for me and has eased my mind quite a bit.

I am still being treated, so I’m not sure yet what the regularities of my treatment are going to be or if I am going to get medication or not. But it’s nice to know I am not alone and that there is a place where I can speak to people that have been going through the motions for a longer time.

@Duncan Medieval or not, I get some kind of amusement out of it that it’s actually effective for something current. As at the time, they would use it for so many things, sometimes having disastrous effects.

[Duncan]

Ha yes it also amuses me that bloodletting is still a current medical procedure @KevM! Thankfully not too invasive in the whole scheme of things, or at least if the phlebotomist is skilled

[Slakweld]

Hi everyone, I also have Polycythaemia vera (PV), diagnosed 2 years ago. I have venesections to control my HCT level although I haven’t had to have one for since March as my figures have been good. I take daily aspirin and the hardest part for me is remembering to take it!! As for travel insurance I get it free through my bank and I contacted them to let them know my condition and it made no difference to the policy, the only question they asked was had the condition caused a blood clot.

[Duncan]

Hello there @Slakweld, welcome to the forum. I’m really sorry to read of your diagnosis with Polycythaemia vera (PV) but am glad you found the forum. You’re not alone in having been diagnosed with Polycythaemia vera (PV) as you can no doubt see from this thread.

Sounds like your treatments are going well if you haven’t needed phlebotomy for a few months, how excellent! Your current treatment would be my ideal, just a daily aspirin and bloodletting as necessary. Long may that last for you. I wonder if you were asked about a previous clotting event as I believe our specialists class us as being at higher risk if we’ve already experienced clotting. Hopefully you haven’t!

Perhaps you’ve already had a look around the forum, but there are many of us here living with MPNs like Polycythaemia vera (PV) and all the other dozens of blood cancers. Since my own diagnosis with Polycythaemia vera (PV) last year I’ve come to find the forum really supportive and I hope you do too.

Have a look at the Blood Cancer UK information about Polycythaemia vera (PV) if you haven’t already, it’s based on great research: What is polycythaemia vera (PV)? | Blood Cancer UK

Do please let us know how you get on.

[Erica]

Hi @Slakweld welcome to our forum.
Thanks for setting the scene so clearly with your experiences.
Yes, it is worth seeing what incentives banks/building societies offer their clients, I had never thought of that, thanks a handy hint.
It also shows how the questions we get asked can be so different.
Really look after yourself and I look forward to hearing more about you.

[Carolemavis]

I do find that this is a strange cancer to have as it cannot be seen and once friends and family know you have it and get used to it and see you getting on with life they forget you can get tired and need help. Like most women I just get on with it but sometimes it would be nice to just be given help with out having to ask. Moan over it is at least at the moment not life threatening just limiting so I am lucky.

[Erica]

Hi @Carolemavis I agree with everything you say, but I have realised that other people are not mind readers and see me getting on with it.
I also realised that I was feeling very resentful.
However once I asked for help when I needed it the situation completely changed.
I have found that people were pleased to be asked, they understood me better and I felt so much better.
It is so difficult with hidden disabilities and with me always being the capable, getter on with it one and the reliable one
I have also learnt to say ‘No’.
Look after and be very kind to yourself and let us know how you get on.

[Duncan]

Me too @Carolemavis, strange is such an apt way to describe Polycythaemia vera (PV). On the days when fatigue isn’t too bad and I’m busy I can even surprise myself by forgetting I have a blood cancer! Other days when my legs are like lumpen logs I feel like the Polycythaemia vera (PV) might be invisible to others but I definitely feel its constraints.

I love what @Erica says about how people can be pleased to help when asked, that’s been my experience too. Sometimes I first need to remind loved ones of potential limitations, like being in crowded spaces around unmasked people, or not wanting to be out in the sun all day with photosensitive skin.

Perhaps if we’re the kinds of people that others tend to lean on for their own support it can feel harder for them to acknowledge when we need it too? I’ll keep practicing asking when I need help—learning when I’m reaching my fatigue threshold doesn’t come easily, yet!

[Carolemavis]

Hi I do ask friends for help or explain why I cant do things and they are always great but family dont always understand, I think in a way its my fault as I have always been so capable and busy and they do find it difficult on my cant do anything days. I think having a cancer that no one understands or have heard of is hard on everyone the person with it and family and friends. If it was one of the main ones everyone knows and talks about then everyone understands. I feel lucky that I dont have one of those but mine has no end it is something I must live with and has no cure which sometimes is hard to deal with. I know I am only just getting used to it and I am sure in the future I will handle it better.

[Duncan]

Sounds all too familiar @Carolemavis and, if I may be so bold, like you’re handling it well and openly. Hopefully in time your family will learn more about what you live with and come to lighten your load. My other half has become a great support on blood test days and I even look forward to phlebotomy days as we tend to have some kind of fancy dinner that I don’t need to make or think about! Small pleasures…

I really empathise with how you describe having such a rare cancer versus better known types. It sometimes feels like I need to have all the answers ready for people who can’t quite get their heads around Polycythaemia vera (PV), but I’m not a doctor and actually find the attention on me and describing my health issues uncomfortable.

Maybe we could print out little cards listing Polycythaemia vera (PV) information to save us the bother of repeating ourselves, or for days when the fatigue makes it too frustrating to keep self-advocating!

[BevP]

Hi @KevM! Your post struck a chord with me when I read it this evening… I too have Polycythaemia vera (PV) (diagnosed in February this year) and am being managed with venesection and aspirin. My ferritin has also taken a nosedive, but that’s the aim of the game I guess! Rubbish though isn’t it?!

I know your post was from a couple of months ago now - I’m new to the forum, but already feel a little less alone in this newfound world of living with Polycythaemia vera (PV). How are you getting on? I hope your sailing plans are materialising and you’re having more of the better days than the less good ones

[BevP]

Oh my goodness @Carolemavis and @Duncan - I hear you!! On the days I can I try to do everything, and then on the days I can’t there’s a look of bewilderment… It’s so refreshing to know others experience it similarly too.

I totally share your sentiment @Carolemavis as of all the cancers it could be, it’s likely one of the ‘better’ ones to be diagnosed with, but that comes as a double edged sword doesn’t it as it will always be there.

Here’s hoping tomorrow is good day for everyone. Take care