Looking for a PV buddy (or buddies!)

[BevP]

Evening all,

I’m a long time lurker, but first time poster! I was diagnosed with Polycythaemia vera (PV) in February of this year. The symptoms I’d had up until then had all been labelled as peri-menopausal - I’m 47 and have been on HRT for 4 years. It was only having been called for a routine health check at Christmas time that my haemoglobin and HCT were found to be out of whack… My GP saw this as ‘minor’, but as a former nurse, and knowing I didn’t fit any of the criteria for elevated haemoglobin, I pushed for a retest, which showed yet higher results. I saw a haematologist in January who went on to diagnose me following a positive JAK2 result, amongst other classic markers.

I had many venesections in the first half of the year, every week in the early days, but I haven’t been bled since the end of May. I’m now severely iron deficient though (which of course is the aim of the treatment!) which has been keeping my cell count in check for quite some time, but brings its own set of fun symptoms! I’m confident I will almost certainly need a bleed again in the next few weeks as I feel pretty rough just now - if it’s not the Polycythaemia vera (PV) symptoms getting me down it’s the ID ones and frankly at times I have no idea which it is!! :0/

I figure that whilst there aren’t that many of us with Polycythaemia vera (PV), there must be others in this forum who have felt/feel similarly alone whilst learning what’s ‘normal’ when living with blood cancer, so this evening I’ve put my big girl pants on and started typing.

So, does anyone fancy being my Polycythaemia vera (PV) buddy?…

(P.S. it seems every mention of the name of this condition is spelled out in full above even if that’s not what I typed!! )

[Erica]

Hi @BevP I am so glad that you put your big girl pants on and dipped your toe in the water and posted, welcome.
Yes, this site does type the whole words out of certain initials to de-mystify the initials for people who might be confused with the initials.
Yes, our diagnosis, whatever our blood cancer, can feel very lonely and isolating.
We do not have a buddy scheme as such.
However hopefully we are a very supportive forum so when you read a Polycythaemia vera (PV) post that you relate to please do respond to it. I expect there are more people with Polycythaemia vera (PV) on our forum than you might think.
I have found that no matter what the blood cancer is manty of us share similar thoughts, feelings and practicalities.
I realise you mention whats ‘normal’ I attach the details from the Blood Cancer UK website for you on Polycythaemia vera (PV) and it’s symptoms
Polycythaemia vera (PV) | Blood Cancer UK
As for what is normal, I expect, you as a former nurse, will realise we are all unique people with individual medical histories and treatment plans.
If you still feel isolated please do let us know.
Be very kind and look after yourself

[Rammie18]

More than happy to be a Polycythaemia vera (PV) buddy… though they say it’s a rare form of blood cancer there are plenty of us here with the condition to share stories and journeys

[BevP]

Thanks for the warm welcome @Erica I think if I’m honest the fact this isn’t going to go away is finally sinking in hence I’m at a point of wanting to engage with others now. I’ve done a lot of reading on Polycythaemia vera (PV) - research papers, articles etc and have watched countless hours of Myeloproliferative neoplasms (MPN) forum recordings.which have all been super helpful and informative, but the BCUK website was the best source very early on. I think it was the first place I got comfort that there is life with Polycythaemia vera (PV) when my diagnosis was looming and I’m very grateful for that. I hope you’re keeping well - you seem very active on here when I’m sure you have struggles with your own condition. Thank you for your support

[BevP]

Thanks @Rammie18 I’d be interested to know how you manage the symptoms of Polycythaemia vera (PV) and ID - have you found your groove a few years on from your diagnosis? If so, how? I think one of the things I’m finding most tricky is that the haematologist who diagnosed me, and whom I trusted implicitly retired from her clinic in the summer. I was referred to the care of another who when I saw her for the first time in September had no idea why I was there - she hadn’t read my notes and fobbed me off saying that as my HCT was just in range, despite my ferritin being in my boots, that given I’m a woman of a certain age perhaps I should consider talking to my GP about HRT. I’ve been on HRT for four years… My bloods have been checked by my GP too now and my HRT dosage is fine. Most days I feel rubbish though, I’m so so tired, I have mega heartburn after pretty much every meal, I itch, I have restless legs at nighttime, I get frequent epic headaches and at times I just can’t focus/concentrate. I’m a project manager and that all makes working full time of getting stuff done for my clients quite tricky - but somehow I do. Is this really what ‘normal’ feels like with Polycythaemia vera (PV)??

[Duncan]

Hello there @BevP, a great big welcome to the forum to you! I’m so sorry to read of your diagnosis with Polycythaemia vera (PV), and the long road to finding that it wasn’t perimenopausal symptoms. 4 years to get a diagnosis?! I really feel for you tolerating that wait, but am so glad you found the forum.

May I ask what “ID” is, sorry to be dim. You’ve already noted that the forum automatically turns blood cancer acronyms into their full names, but some are so rare that they haven’t acquired abbreviations yet, like MF for myelofibrosis—another Myeloproliferative neoplasms (MPN) like ours that I’m sure you know of.

Last year I was diagnosed with Polycythaemia vera (PV) after no symptoms at all, but can empathise with feeling rough like you describe as I developed pretty disabling fatigue. Similar age too—were you told you’re a young survivor too?! Nice to feel youthful again! Like you I had many phlebotomies initially, getting to know my lovely phlebotomists well. Now phlebotomy is infrequent as my daily chemotherapy has gradually brought down my blood proliferation. Sounds like you’re not taking any medicines, not even aspirin? This would be my ideal, but alas I already experienced a clotting event many years ago which put me at “high risk” of another clot, hence the daily hydroxyurea and aspirin now.

So I’d say well done for tending to your self-care and braving opening up on the forum. I hope you come to find it as helpful as I do @BevP, folks here are so supportive and caring. I see you’ve worked in a caring profession yourself and perhaps know how hard it can be to ask for support when you’re more used to looking after others. Now is the time for you to let others care for you! I do hope you have loved ones you can talk this through with. You now have the forum where you really are understood, no matter what you bring up. Have a look around and you’ll no doubt find many of us living with Myeloproliferative neoplasms (MPN), some for decades. Gives me hope that there is a long life ahead after diagnosis.

Lovely that you found the forum @BevP. I’m looking forward to hearing more of how you get on, fellow PVer!

[BevP]

Hi @Duncan lovely to meet you - albeit virtually.

By ID I meant Iron Deficiency. I should have spelled that out shouldn’t I - sorry! Re meds, I do take aspirin daily, and a vitamin D supplement, but nothing else yet. I’m sure my time will come for that. Starving by body of iron seems to be doing the trick to some extent, but man do I feel shabby as a result. I’m sorry to hear you’ve had a clotting event that’s fast-tracked cytoreductive meds for you. Do you find they make you feel any better than just the bleeds and aspirin, or have you been on them pretty much since diagnosis? (The latter I suspect, so likely a daft question - apologies if so).

Given most of the information available on Polycythaemia vera (PV) seems to suggest Polycythaemia vera (PV) diagnoses are predominantly in men over 60, it’s good to know there are other ‘youngsters’ (yes, in this case I think we can consider ourselves that! ) out there!

I think I came to my own conclusion on the symptoms I was experiencing back in 2020 being perimenopausal, and my GP at no point suggested doing any bloods but rather just threw some HRT at me and told me to ‘see how you get on with that’. As I say, it was a routine call for an NHS health check at Christmas time last year (3 years later) that resulted in bloods and ultimately my diagnosis. Who knows when my Polycythaemia vera (PV) began therefore, and to what degree some of those symptoms were ever attributable to hormones. I began experiencing occular migraines in the spring of 2023, so I suspect that was perhaps to do with my bone marrow getting over excited and pumping out red cells continuously from that point at least. It makes sense now, but of course I had no idea at the time, so I began taking a perimenopausal supplement which contained iron, so unwittingly was pouring petrol on the flames!!

Anyway, every day is a school day. It’s really good to know there are others out there @Duncan - thank you for your kind words. It’s been a pretty rough day today, so I’m very grateful

[Erica]

Sorry to hear that you have had a pretty rough day today @BevP you really show what complex beings we are.
As the sayings go ‘tomorrow is another day’ and ‘every day is a school day’ as you say, I do like to learn something every day.
I reckon our diagnosis sure is a sharp learning curve and it did give me the opportunity to reassess my life and what I wanted out of life and with whom.
Be very kind to yourself

[BevP]

Indeed. Wise words @Erica - thank you. One day at a time I guess is the way to approach it. I’m a Project Manager though and it’s more than a little vexing that I can’t project manage my way through this, nor focus and perform at my usual 110% at all times. Maybe there’s a lesson in there somewhere…

[Duncan]

Aww it’s my pleasure @BevP! Anything I can share from experience that might make it easier for you and others is a treat. It really is a sharp learning curve like dear @Erica says.

Ah iron deficiency = ID, seems obvious now to my sleepy brain! No need for apologies though, and thank you for explaining. So true about low iron being common with these Myeloproliferative neoplasms (MPN) and their treatments, and its many potential annoying side effects. I know some others here with Polycythaemia vera (PV) and low iron have intravenous iron infusions occasionally with their haematologist’s say-so. Perhaps this is something you could ask about having? Especially considering the perimenopausal symptoms you mentioned.

It might be that if you start taking hydroxyurea and it works well for you then you’ll get to decrease the frequency of phlebotomies and your iron levels won’t get so depleted. I took a multivitamin prior to diagnosis as I’m vegan and my haematologist said it’s fine for me to keep taking an iron-free version. Oh my, bet you wish you could go back in time and change that perimenopausal supplement!!!

Thank you for your concern, that’s so sweet of you. The heart attack was a real shock as I was active and young. Now I realise it was possibly an early sign of Polycythaemia vera (PV) as it was caused by a clot. Similarly to you, I had weird migraines on and off for years, which I wonder could also have been Polycythaemia vera (PV). Being considered at high risk and yet young is pretty gutting, but I’m glad to be here to tell the tale so won’t grumble too much.

As I had no obvious symptoms of Polycythaemia vera (PV) prior to diagnosis I put all the ones I’ve experienced since down to the hydroxyurea. My first haematologist was particularly uncaring, trying to tell me the fatigue and brain fog I felt must have been due to my lack of fitness (despite me being a very active person). My current lovely haematologist is like, well of course the chemotherapy can affect you and your energy! Nice to be heard.

I’ve taken aspirin since my heart attack and that has never bothered me. So I do think the rubbish fatigue was mostly the chemo affecting my body, but it’s faded a lot now and is mostly fine. Definitely a bit of “chemo brain” feeling foggy-minded and not always able to think complex ideas through. On those occasions I’ll try not to berate myself, rest, and then resume the activity later. If I could, I’d tell my newly diagnosed self to try to tolerate the fatigue and trust that my body would get used to the chemotherapy.

Unfortunately the other symptoms you mentioned are common too, like the itchy skin. Something that others swear by is taking cooler showers/baths as something about the warm/hot water can agitate our skin. Drying ourselves gently with a soft towel can help. Milder bathing products help too—I use an emollient shower gel now which moisturises rather than strips my skin of oils. I’m not a doctor but if I remember correctly the sensitivity is about our blood becoming thinner and thus reaching closer to the surface of our skin? If you start to take a cytoreductive medicine like hydroxyurea then be warned they’ll likely make your skin photosensitive and more dry. I had to learn how to moisturise properly, and of course be far more careful in the sun.

I’m sorry you had a rough day @BevP but you’re always just one sleep away from a new day, which sometimes helps me feel like a fresh start. Do please keep us posted about how you get on now you’re part of the family.