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!