Now part of the polycythaemia vera posse

[Duncan]

Oh goodness, @Rammie18! I’m really sorry to read that you had a second heart attack. How horrible, I can unfortunately empathise, as you know. Now I see why you were in hospital for a few days. Hopefully they could give you good news even in the midst of that? I still thank my good fortune to have got to the new cardiology ward in my local hospital super fast during my heart attack as it minimised the scarring, according to the cardiologist. Who knew hearts could scar?! I sometimes wonder if the stent that was fitted sets off security alarms

I’m really glad your body is tolerating the hydroxyurea so well, @Rammie18 . Pity about feeling nauseous though. I’m especially glad to read your optimism, it’s infectious in a good way! I had all sorts of side effects straight away when I started taking it, like that nausea you mentioned, and [checks notes] headaches, nasty fatigue, tender spleen area, digestion discomfort/bloating/constipation, visual distortions, morning sweats, heartburn, tinnitus… As I had no symptoms beforehand I could easily tell these were due to the hydroxyurea, or perhaps interactions with my heart medicines.

Weirdly I noticed my tendinitis returned after years of absence, plus a sprained finger started aching again, due to starting hydroxyurea. After 6 weeks I still had the fatigue, difficulty concentrating, and digestion stuff. It’s mostly all faded now and I am so glad I don’t get that grim, disabling fatigue anymore. I hope your side effects fade away too, @Rammie18. How did it go today? Let there be good news!

Had phlebotomy session number 6 today after a long break. Despite drinking 3/4 gallon of water yesterday my veins weren’t behaving. Best laid plans and all that. My lovely nurse said that anxiety, specifically the flight/fight/freeze response, can cause veins to shrink! Anxiety just always lurks away, waiting to make the simplest thing suddenly worrisome. So annoying. Must remember to do my breathing exercises before the next bloodletting. But my blood was thin and drained fast regardless so it was fine after all. Took my nurses a thank you card and I saw it displayed in pride of place as I left so that felt great.

Thank you so much for that info about our iron levels, @CarolineL, and those mouthwatering descriptions of your vegan meal! Oh my. Going to head there the next time I’m in London, thank you for sharing! My haematologist didn’t let me know about the likelihood of decreasing iron, but I’ve read folks here say theirs can get low so I’m keeping half an eye on it. Should get an iron test soon to be sure. I wonder if there’s a specific healthy low amount of iron for those of us with Polycythaemia vera (PV) to aim for? Perhaps it differs depending on gender and overall health/diet/age?

Have to say, I was pretty daunted by starting chemotherapy because, well, growing up in the era that we did it always looked terrifying on TV, and in reality—I saw my grandpa ill with cancer as a child and those images have stayed with me. However, like you noted we Polycythaemia vera (PV) survivors chatting here are considered young, and like @Rammie18 said hydroxuyrea has been around for decades. It would have been found ineffective by now if it had any truly deal-breaking side effects. I reckon its common side effects are preferable to any kind of dangerous clotting incidences that are more likely to occur without hydroxyurea. All this medical intervention feels so personal doesn’t it, like a bonkers pros/cons list that never quite balances out?!

I hate taking medicine. I hated having to start all the medicines after my heart attack, knowing they’re tested on animals and not fully understood. However, I’m also really thankful to still be alive due to something as simple as aspirin! I’m trying to see hydroxurea in a similar sort of best-case old-school medicine sort of way. And I remind myself that advances in medicine keep occurring and that it’s possible that within our lifetimes a treatment will be discovered to undo/switch off the gene mutations that make us so ill.

Who knows! I couldn’t believe my chemotherapy came in a pill, so I like to extrapolate from that and imagine scientists figuring out how to vanquish JAK2 and all those other little mutations that can affect us so much. In the meantime the phlebotomy can make me a little lighter and healthier each session until I hopefully no longer need that either. I’ve read too much sci-fi, clearly I really respect how well you maintain your vegan boundaries, @CarolineL. I hope to have you to empathise with on here for many years to come!

[CarolineL]

Goodness, that is a lot of nasty side effects! Glad that things have settled down for you now and that you’re getting back on track health wise.

I’m with you on hating taking medicine! I always have guilt as it completely goes against my vegan beliefs and I hate the fact that all medication HAS to be tested on animals, despite the fact that 88% of these tests are useless and do not translate into human trials. It’s infuriating, especially when there are so many alternative ways to test now.

It’s interesting that you still have had to have venesections as I was under the impression that if you were on Hydroxycarbamide that you no longer needed these? That is how my haematologist is “selling” it to me as she has said it will stop my iron reserves being stripped all the time as the venesections will no longer be necessary. I’ve also read on Macmillan etc. that Hydroxycarbamide can actually cause anaemia so I am constantly getting conflicting advice as the iron issue is the only real reason that I would consider going on this tablet since the Apixaban is doing a great job of effectively managing my HCT levels. Like you say, it would be useful to know if there is a “healthy” low amount of iron but I only ever seem to be drip fed information whereas I like to have it all at once so I can make informed decisions.

Definitely requires some more thought and careful consideration and I have a lot of unanswered questions so may need to go in to my next appointment with a list as well as asking if there are any alternatives!

[Duncan]

Right, those side effects really were so nasty! When I told my haematologist, being the proactive patient that I am, he literally told me that I was probably just being oversensitive. Hence why I am changing haematologist. Yes I am sensitive… to this vile medicine and blood cancer! I also think having had somatic therapy for PTSD has helped me sense stuff in my body better than before and so I do notice strange sensations theses days and thought maybe my medical specialist would be interested.

From what I understand, bearing in mind my haematologist hasn’t been very forthcoming, because I had high levels of red blood cells and platelets upon diagnosis they were keen to remove the excess blood—the proliferation of blood cells that is the main risk of MPNs. While the hydroxyurea is meant to disrupt the gene mutation causing overproduction of blood cells, the phlebotomy literally removes the excess blood. This helps minimise pressure on our hearts from having to pump excess blood around. I’m sure you know this so apologies if I’m just stating the obvious.

I really feel it after the bloodlettings, my body is literally lighter and my heart doesn’t pump so hard, and it’s a lovely relief. I was feeling like it was harder to pump blood leading up to my latest phlebotomy yesterday and straight after felt more lively and could move more easily, but that’s my somatic experience and I appreciate others in similar situations don’t have it so easy.

Know what you mean about conflicting medical information. I haven’t looked on Macmillan much. I get my Polycythaemia vera (PV) info mostly on here, via the forum as well as there’s so many lovely survivors sharing their wisdom, plus an American organisation that is great, LLS.org.

[JennyLK]

Hello Duncan & everyone
I’ve just read all 83 posts on this thread. Thank you!
We are in Australia, and after much internet searching, this is the best forum I’ve found
. My husband was diagnosed with Polycythaemia vera (PV) a week ago. He’s had his first venesection & 2nd dose of hydroxyurea already. I have gleaned so much info from you lot already, and shed the odd tear. I feel reassured just from reading. Thank you!

[Erica]

Hi @JennyLK I am so glad that you have found us as you are in Australia, just be aware that tests, treatments and medical services may vary in different countries.
Congratulations for reading all 83 posts on this thread, quite a marathon!!
I expect so much has happened to you both in just a week.
There is also information on the Blood Cancer UK website.
What is polycythaemia vera (PV) | Blood Cancer UK
Give yourselves time to take it all in, be very kind to yourselves and it might affect you in different ways and please do keep posting and reading

[Duncan]

Aw hey there @JennyLK, so glad you and your husband found this forum! I’m really sorry to read about your husband being diagnosed with Polycythaemia vera (PV), and that you now live vicariously with it all beside him. It’s a lot, right?!

Glad he’s started the bloodletting and chemotherapy—sounds like treatment started super fast for him. I sincerely hope he has an easy time of it adjusting to any side effects from either treatments. For some the phlebotomy is a breeze, for others like some kind of body horror. Same with hydroxyurea side effects. Hopefully it’ll go smoothly for your husband.

It might be worth bearing in mind and preparing for the cancer-related fatigue that most survivors experience. Something like 80-100 % of us get fatigue, and for me personally it was grim… at first. It’s like nothing I’d ever experienced, this bone-deep exhaustion upon waking and foggy thinking. There are ways to live with it and research shows there are some simple additions to one’s life that can boost energy, but I hope your husband is the rare person who doesn’t experience the fatigue!

Keep us posted as to how it goes, @JennyLK. Maybe encourage your husband to join this forum too as it really is so helpful in so many ways, even if you’re just popping in to check how fellow survivors are doing! Helps to feel less alone with it all, at least.

[JennyLK]

Hi Erica, lovely to get your reply. I’ve noticed some differences between countries so I’ll keep this n mind. Polycythaemia vera (PV) is quite a journey isn’t it! Thanks.

[JennyLK]

Hi Duncan, He’s already got the fatigue & brain fog coming and going. He is organising his work schedule around it - so far so good. . We are pretty positive at the moment, but I know it is a day-to-day proposition. Maybe he’ll join the forum in the future for tips.
Thanks for caring.

[Duncan]

Hello folks, thought I’d throw out a question to anyone who has developed anaemia from treatment for MPNs.

Had a ferritin test upon diagnosis with Polycythaemia vera (PV) last year (21 ng/mL), and I asked for another recently as I’m vegan and likely don’t get a lot of iron in my diet. Anyway, my ferritin came back as 5 ng/mL. That’s super low, right?! I am feeling a bit more headachy and weaker than usual, but I put it down to preparing for a busy weekend doing blood cancer conference stuff and my Walk Of Light.

I’m wondering if anyone who gets anaemic and has iron infusions knows how much iron they have added? What quantity seems to make you feel stronger and less headachy? I remember @Rammie18 mentioning this, but I understand people may not want to disclose such information. Perhaps the wonderful @LauranBloodCancerUK and @Heidi_BloodCancerUK might be able to enlighten me?

Any tips gratefully received! Not seeing my doctor again until next month. I’ll ask my phlebotomy nurses next week if I need to go in for bloodletting, although currently my haematocrit is less than 45 %

[Rammie18]

Hey @Duncan

Yes my ferritin is often 4-5 but has dropped as low to 3 and lower before diagnosis, which is probably why I wasn’t diagnosed quicker.

If your symptoms feel they are more linked with anaemia than Polycythaemia vera (PV) (which lets be honest are very similar) you can consult with your haematologist to either go on a short course of iron tablets or have a ferinject (transfusion). The amount I have varies but they give me enough to tip over the magical 0.45.

It’s a tough call though it seems like an easy fix as I know of others as soon as an iron influx hits the body a venesection shortly follows that then lowers the iron count and the viscous cycle begins again.

When my iron is low I notice I tend to crave a certain something in my case fennel seeds and my itching returns… thankfully this hasn’t happened in a while but it’s nice to know I have a physical sign & importantly know what’s triggering it.

It’s definitely worth a consult but a cheeky amount of iron feels a bit like giving popeye some spinach…

[Duncan]

Aw thank you so much @Rammie18, that’s really helpful to know. I hoped you’d impart some wisdom. I’m sorry you go through this, but I’m glad you’ve been out there figuring out what helps.

I’d been getting occasional pinprick sensations around my body last week and was like oh here comes the itchy skin that I’d so far avoided and now I feel muscle weakness and slightly out of breath going upstairs and so on. I’m glad I asked to be tested for ferritin. My B vitamin levels are all good though, thanks Marmite! Haven’t noticed any cravings… yet. Well maybe for chocolate, but that’s every day.

Likely autocorrected but the hilariously apt “viscous cycle” should be put on t-shirts! It does seem like we tend to circle between thin and thick blood with these treatments. Speaking of, I’m going to take an 18 mg iron tablet or two before my next CBC on Monday to see how it affects this apparent anaemia and my haematocrit, which was 43.7 % earlier this week. It’s rare to have CBCs only a week apart, so it’ll be interesting to see what changes from taking an iron supplement. I’m not waiting a month to see my doctor while these anaemia symptoms continue!

[Rammie18]

That autocorrect is a nightmare…

Lack of energy, fatigue and tiredness are also common symptoms of low iron so your symptoms aren’t surprising.

The priorities of the haematologist may not be helpful when we have to endure what holds us back but it’s a case of choosing the lesser evil.

Yes, chocolate is a good alternative of cravings… I read most people with high anaemia crave non foods like ice or dust… etc

My house would be like a buffet if it’s dust

[Duncan]

Ha I’ll look out for other unusual cravings, in that case! Dust would be a handy one for me too

Would never wish these symptoms on anyone but it’s a kind of relief to know I’m not alone in getting anaemic side effects from Polycythaemia vera (PV). Ha just as I typed that my tinnitus turned its volume up a notch, which I’ve read can also be due to anaemia! All these random bloody symptoms, I’ll need a flowchart…

Feeling a little less weak today after taking an iron supplement the last 2 mornings, which may well be all in my mind but I’ll take it!

Thanks again, @Rammie18, I’m so glad to have had your support since diagnosis

[Rammie18]

You’re always very welcome @Duncan

Make sure you’ve consulted with your medical team taking iron supplements just so they can advise firstly whether it’s a good thing and two dosage and duration.

[clickinhistory]

@Duncan re your iron levels, if you walk past any iron railings or rusted metal and it attaches to you, it is your body telling you something
Given my recent issues with the leeches, it seems the medical profession are in the position of “we know the Polycythaemia vera (PV) is attached to your iron bone which is attached to…er not really sure about that right now”

[Duncan]

It’s funny you should say that but I do like the smell of rust! Often I really fancy some spinach too

[Duncan]

Absolutely. I wouldn’t add iron back in without my doctor knowing, who I saw last week. Because I’m having CBCs only a week apart it’s a good time to see what difference taking a couple of iron pills will do to my haematocrit, and energy levels in that time

[Duncan]

Hope you’re all having a loving but not too sweet valentine’s day

[NinaSt]

Hello ! Im New here with the same diagnosis Polycythaemia vera (PV). Im 40 years old , Nina.Last year my general doctor due to my high level of platelets (600) told me to see haematologist. And so it started. My first biopsy in june - 0 changes, but my Jak2. is positive, so in autumn my second biopsy has showed changes in my red cells. And I became my diagnosis Polycythaemia vera (PV). My haematologist prescribed me Hydrea without any explanation to my diagnosis and treatment, and said to read in google. Sure I googled a lot , it was really a nightmare. I had a really bad mood , a lot of tears and I felt all symptoms that I googled. I started to find another specialist. Recently I changed my haematologist to another, who had talked to me! And prescribed me Interferon, plus aspirin. I would like to thank to this forum, who rescued my statement, so helpful and supportive information.

[clickinhistory]

@NinaSt hi and welcome to the club no one wants to be in.
The only good thing about Dr G is allows you to find sites like this Just watch out for @Duncan tofu hankerings and @Erica and her role as the priestess of the spring of water
My Dr just went, “yep after that answer I expect you have Polycythaemia vera (PV)” “This test should confirm it” and the only written confirmation was a copy of the letter he sent to the medical practice. With a lot of other stuff he never said to me or I said to him.
As someone said on another thread, Polycythaemia vera (PV) is rare enough, Dr’s struggle with it, so information is scarce, more the broad strokes of impressionism than the fine details of pointillism.
So welcome to the dance with the little Red Barons inside of you.
I suggest you dig around on the site for others journeys and the sites info sheets and the good thing is now you are not dancing alone in a corner to quote Robin