Now part of the polycythaemia vera posse

[Duncan]

Aw @Rigalanc I’m so sorry that you got diagnosed with Polycythaemia vera (PV), but now you’re part of the family and you know what you’re dealing with. You’re not alone with Polycythaemia vera (PV), there are many lovely folks here on the forum who live with it and other MPNs and know what you’re going through. There are folks who’ve lived with Polycythaemia vera (PV) and other related MPNs like Essential thrombocythemia (ET) for decades and according to research it shouldn’t shorten our lives. We can live into normal old age with Polycythaemia vera (PV) with just minimal adjustments to our lives.

Perhaps I could offer some reassurance? I’ve taken daily hydroxyurea and had regular phlebotomy for over a year now. At first, after diagnosis, I had to have phlebotomy more often as my blood was thicker and more at risk of clotting. Blood clots are our main risk with Polycythaemia vera (PV) so thinning our blood helps reduce those risks. My blood is now thin enough to be considered normal again, as in my blood cell numbers like my platelets are within the normal ranges.

Like @Rammie18 says so well, hydroxyurea is a common medicine that has been used for decades. In fact, something that reassures me about hydroxyurea is that kids with sickle cell have been treated with it for many, many years and yet they don’t have a higher occurrence of cancers.

So if you’re anxious about developing other cancers like the hyrdroxyurea warning label says, clinically it is very unlikely. Hydroxyurea is considered a cytoreductive type of chemotherapy so there are issues to bear in mind, but research and years of statistics show it is relatively safe.

However, hydroxyurea does make our skin photosensitive. When I’m out in the sun I can feel little pinpricks of sensitivity across my skin if I haven’t used a high SPF sun lotion, so I highly recommend wearing that. There are slight risks of developing skin cancers while taking hydroxyurea so be really careful of your skin in the sun.

I find that taking hydroxyurea dries my skin out so I have to moisturise every day and make sure to hydrate more than usual. On the day before phlebotomy try to drink as much water as you can so your veins are nice and plump and your blood hydrated. It makes draining blood easier and faster.

Something you might experience is the hydroxyurea not bringing your haematocrit down to a normal level very quickly. It took almost a year for my blood cell numbers to settle down taking hydroxyurea. Once your blood is back to being ‘normal’ you probably won’t need phlebotomy so often, or at all. The medicine alone will be used to keep your blood cell numbers in their normal ranges.

I see @Rammie18 has shared the Blood Cancer UK Polycythaemia vera (PV) information already, but perhaps you’d like to read about its family of blood cancers, MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Hope this helps. Please know that you have support here on the forum. Your shock is to be expected with such a scary diagnosis but please trust the treatments and give them time to work.

Let us know how you get on, @Rigalanc.

[Erica]

Hi @Rigalanc at least you have your diagnosis and way forward.
I think it is natural to be in shock when you actually receive a diagnosis and for a while.
However a nurse once said to me you actually are the same person that you were before you got your diagnosis, no consolation I know.
As for side affects well they give you the worst scenarios to cover themselves.
Be kind to yourself and please do keep posting

[Duncan]

Wonder if I may share some good news? Perhaps also a bit of reassurance to those taking hydroxyurea and having phlebotomy.

I saw my haematologist yesterday and he was a pleasure as ever—really makes a difference, doesn’t it?! Anyway, he confirmed what I’d suspected from recent monthly blood test results, that my blood cells are all in their normal ranges after a year of daily hydroxyurea and occasional phlebotomy! We were going to raise the hydroxyurea dosage but apparently I won’t need to.

Also, I don’t need phlebotomy anymore, apart from any months when my haematocrit is too high. And actually I’ll be going down to something akin to active monitoring with blood tests every few months. It doesn’t feel real, but then the diagnosis in the first place was pretty bloody surreal.

Just so relieved to have found this forum and learnt to tolerate this horrible blood cancer with support from people here, especially as it felt like I’d been set adrift with no map by my first haematologist. I would never have imagined feeling okay a year after diagnosis. Resigned but living on! Thank you all

[Erica]

Oh @Duncan that is good news.

[Duncan]

Isn’t it @Erica?! About as close to “watch and wait” as you can get with something like Polycythaemia vera (PV). Thank you so much for your support from the moment I first posted here

[Erica]

I reckon I would call it ‘watch and wait’ or ‘active monitoring’ with the thoughts and emotions it brings up @Duncan

[Duncan]

Definitely! Such an odd place to be, no longer needing invasive treatment but also still being under the care of a haematologist. I imagine there’ll be occasional months where I’ll still need the bloodletting but generally I’ll be off on my merry way with my low-dose chemotherapy. Bonkers! I think I could like this Goldilocks zone I find myself in

[Rammie18]

I watched a YouTube video (seem to be getting a lot in my feed at the moment - but knowledge is power!) from a bunch of medical experts in haematology and discussed that a sign that medication is working with Polycythaemia vera (PV) is when you need phlebotomies less and less so reading your update is a great sign that you’re heading in the right direction.

Thank you so much for posting a positive story on hydroxycarbamide as I think the warnings and potential side effects that people read before taking or be advised gives it a bad rep.

[Duncan]

Oh that makes this even better news, thank you so much dear @Rammie18! I’d be remiss for not thanking you too for welcoming me here straight away. I could very well have slinked back off had I not been met with such good advice, I really do appreciate your support this year.

[Rammie18]

@Duncan no thanks needed you’re forever welcome… if there is anything I’ve learned being part of the forum is never underestimate the power of a post!

It also stated that your hct needs to stay below the magical 0.45 to be at normal risk of a blood clot which is the same risk level as a non Polycythaemia vera (PV) patient. The easiest way of getting your hct levels back down is by Phlebotomies so if your meds is keeping you below the level consistently and sustainably then it’s a great sign.

Moreso if while on your meds your white blood cell count is not increasing then you really are swimming with the fishes…

I’ll get this confirmed when I go the Myeloproliferative neoplasms (MPN) Polycythaemia vera (PV) seminar in early August.

[JanetF]

Hi, @Duncan! That is fantastic news! You must be so relieved! To have got all your numbers in the normal range within a year is a real achievement and not having to raise the dosage of hydroxyurea is really good, as is not having to have regular phlebotomies any more! It is definitely as close to ‘watch and wait’ as you can get with Polycythaemia vera (PV) and that is great!

Wishing you all the best,

Janet

[Duncan]

Ha yes isn’t it great @JanetF?! Thank you, I do feel relieved. Surprised too.

Always feels like I’m sticking my neck out a little to share good news, and even now I feel survivor’s guilt. However, I also think about how so many folks diagnosed with MPNs like mine understandably worry about scary-sounding CHEMOTHERAPY and BLOODLETTING and want to reassure others that they can work and actually my treatments have become, dare I say it, pretty mundane. Long may that last.

The bright pink and dark green capsules of powdered chemotherapy that I take every day do still freak me out though. Sometimes I look at them and marvel at how very Star Trek it is to simply pop a cancer pill and go about my day! Other times I read too much into the minutiae and anxiously lose track of time.

But yes this is the best-case scenario I didn’t even know I could expect! It’s going to take some time to let it sink in I think. Time for a hike!

[JanetF]

Hi, @Duncan! I know exactly what you mean, but I think it’s really important to post about the good times as well as the bad times on here. Life is a mixture of good and bad times, and so are our blood cancer journeys, so it’s only right that we should reflect that here. I think the relieved, happy times like yours today can give hope not just to the ‘old hands’ of MPNs and other blood cancers, but just as much to people at the beginning of their journeys with this, at a time when it’s so easy for everything to seem so overwhelming and when we can wonder if the sun will ever shine for us again or if this is just the first step on a long road downwards.

From what’s happened to you today and from what someone else (whose name I’m ashamed to say I have forgotten, even though it was only really recently) posted recently, we are reminded that there can be good outcomes along the way, even for chronic blood cancers, and there are happy times out there for us! So yes, I do think it’s important to share the ups as well as the downs!

I’m seeing my haematologist tomorrow, so fingers crossed for some good news too! I’m still quite new to Polycythaemia vera (PV), although it isn’t my first run-in with cancer. Twelve years on and still alive and kicking! May the Star Trek magic continue for you - or should that be live long and prosper?!

All the best,

Janet

[Duncan]

Aww thank you so much for this reminder @JanetF, so so true about sharing the good news as well as the not so good. In fact, it was others here who shared their progress news early on after my diagnosis that gave me hope. Also not to tolerate shoddy haematologists!

Speaking of our doctors, I really hope it goes well for you tomorrow with yours. Have you got all your questions and observations at the ready?! I emailed mine in advance so my haematologist had time to prepare for all my mitherings! I’d love to know how it goes for you if it feels okay to share, but of course don’t feel obliged. I’ll keep my fingers crossed you get great news.

And I just wanted to say how sorry I am about your previous brush with the big C. Amazing that you’re here to reflect on it and hopefully it’s helped strengthen your resilience in regards to tolerating Polycythaemia vera (PV). Wonder if yours are linked somehow? Pretty sure my heart attack was an early sign of Polycythaemia vera (PV) getting up to its clotting shenanigans!

Thinking of you @JanetF. Thank you again for your support!

[Duncan]

Sorry not to respond till now @Rammie18. I’ll look forward to your findings from the seminar. Hope you have a good time, imagine if you do get to meet other forum members there!

When I changed over to my new haematologist and he started mentioning eventually stopping phlebotomy I remember thinking how I would have preferred to stick with that than the chemotherapy. It felt like getting both bloodletting and one-to-one advice from nurse experts all at once—although of course I hesitate to call it a BOGOF as my phlebotomists have been invaluable! However, $33 for 3 months of hydroxyurea pills versus $330 per phlebotomy session certainly makes it an easier decision

I hadn’t read about white blood cell counts to be honest, but kept an eye on any blood cell counts that were out of the ordinary. All the -cytes and their functions are a bit beyond me. But look, seems like my white blood cells have been behaving

[Rammie18]

They look excellent

[Duncan]

Hope it went well with your haematologist, @JanetF, and that you got good news—or at least no further difficult information!

[JanetF]

Hi, @Duncan! I’m sorry to have gone silent after your kind posts. First there was the time difference between Kenya and the US, then there was the rush to get out to the hospital, then other things got busy, then at the weekend I had a cardiac scare (well, two of them ), so somehow Saturday, Sunday and Monday all disappeared in a heart-shaped puff of smoke, then yesterday I was getting my breath back after all of that and here we are, midweek already!

Heart-wise all now seems to be OK, but it was all rather scary on Saturday night and again on Sunday night (the only two nights each week that my housekeeper isn’t here - typical, eh?!) and I was at the point of letting my cousin have the code for my household safe and the passwords for anything I thought she might need access to should the worst come to the worst. It’s the first time I have seen the cardiologist since the Polycythaemia vera (PV) diagnosis, which of course puts a different light on everything, but she was very thorough and we already knew one another from when I was an inpatient when I had viral meningitis last autumn after the shingles virus got into my cerebrospinal fluid and from there into my brain.

My appointment with the haematologist on Friday went well, thank you for asking! Like you, I send her my list of questions and observations in advance so that she is forewarned and forearmed, and, as we know, having four arms is a jolly useful thing! We went through everything and she is happy with my progress, although it’s still early days. We agreed that I would have another venesection on Saturday, so I went out on Saturday morning for that to be done. I’m still ‘test driving’ the local hospitals for venesections before I settle on one, and this one (the closest to home) was very welcoming, but the staff were a bit taken aback by someone just coming in and asking for a venesection to be done! The difference in the speed at which the blood comes out now that I’m taking the baby aspirin is incredible, though. The last time it was done, the nurse actually had to use a medieval-looking instrument to manually pull the blood down the tube because it was so thick that it wouldn’t flow down on its own, but now it all but runs down!

That wasn’t that much of a surprise, actually, as the week before last my neurologist had done my quarterly Botox injections (for chronic migraine, so over the top and back of my head, but not where you would have them for beauty purposes, although if he has any fluid left at the end he does always ask if there’s anywhere else I would like it to go!) and every single time he took the needle out, blood spurted out! It had never happened before! He does 50-something injections and it was as if he had hit a Texas oil field with every one of them! Now that’s how you know that the blood thinners are working!

As for my previous brush with the big C, it was a gynaecological cancer and my oncologist said that I had ‘got lucky’ with it, as it was the best of the gynaecological cancers to have and they had picked it up unusually early. It meant leaving several more body parts in Beirut (I had already had several operations there - nothing to do with the conflict…), but all has been well on that front since. It - and various other things - has given me experience of coping with health hassles around my body and around the world, I suppose, and each new thing does sometimes seem just one more thing to add to my long, long list.

Speaking of things that are very long, this seems to have got very long, so I will stop here, but I just wanted to say how shocked I was at how much you have to pay for venesections in the US. $330 per session is just crazy! Here, I pay an average of $11.40! And that includes either Fanta or Sprite and mini packs of biscuits afterwards! Roll on the day when you no longer need to have phlebotomies, eh?!

All the best,

Janet

[Duncan]

Oh goodness @JanetF, sounds like you’ve had a right old weekend of it! I’m so sorry, I read your chipper description of what you experienced but I know I would have been terrified and stressed. I’m really pleased that your heart is okay now but do take it easy and recuperate, let your nervous system wind down. My long weekend in hospital after my heart attack continues to be my most emotionally triggering health scare so I can only imagine how you’ve been feeling. Sending you heart-shaped empathy

Oh I love your “forearmed” saying, might have to borrow that as it’s so true. I also think with sending notes to our doctors beforehand it means they have time to look up relevant medical information relating to our queries. Let’s face it, we have a lot of comorbidities and quirky side effects when we live with heart and/or blood cancer health concerns, so I want my doctors to have as much information as they need to base their treatments on. Better efficacy and all that. It surprises me to read around the forum how hard it can be for fellow survivors to reach out to specialists who have such a massive say in our health. Long may we have access to our doctors outside of appointments, I say!

Sorry to hear about that venesection being so tricky, I know how that can be. You’ll hopefully find your blood gets thinner as treatment continues and the bloodletting becomes easier both for the nurses and especially for you. Something that definitely helps me is to drink loads of water the day before, usually up to a gallon. I’ve been known to drain my pint of blood in less than 15 minutes when well hydrated! The one time it didn’t work so well was when I was super dehydrated after camping last summer and my phlebotomy nurse had to use the big needle because my veins weren’t behaving and my blood was “thick like molasses”!

Funny to think of what we’ve left in other parts of the world… I’m glad we live to tell our tales and reflect on our travails, even with a touch of humour. Hard to imagine we can find anything funny about these treatments but here we are, comparing medical horror stories!

Keeping my fingers crossed your blood settles down a bit and gives you an easier few days! Glad you have healthcare options where you are, it definitely makes a difference. I’ve started to vaguely plan risk assessments for myself these days when I head out into rural areas where I know it’ll be harder to find Myeloproliferative neoplasms (MPN) specialists nearby. Last summer was interesting heading up into the Sierra Nevada mountains around Yosemite, planning around where the nearest hospitals were, just in case… As for the cost of healthcare here, the less said the better! It’s disgusting that it’s so unaffordable for so many. Definitely pros and cons to these systems, but still searching for further pros. Thankfully I could change my health insurance and it covers the cost of phlebotomy now—just as I stop needing it! Typical.

Be well @JanetF and I hope the rest of your week is far more relaxing.

[Erica]

Hi @JanetF wow, what you are going through and have gone through is incredible.
A cardiac scare truly must be scary.
We are certainly experts on all manner of blood giving.
What we will do for a drink and a biccy.
Yes, a good idea to send your questions in advance to your medical team.
Be very kind to yourself and rest up