@Nixter Hi Nixter just read your post, bless you, I can’t get my head around it either. I have Essential Thrombocythaemia ('ET') Jak2. You certainly have had a few symptoms going on. This site is brilliant and I am sure you will get lots of help and reassurance from others on here. Please take care Best wishes Sal
2 Likes
Hello there dear @Jonpd, thanks so much for sharing this. Isn’t it interesting how alcohol can affect us, even its taste changing?! I might ask my haematologist about this when I next see him, he’s always such a fount of interesting factoids, and then I can share them here!
I agree that keeping our alcohol intake to the recommended units is likely to be less risky overall. It’s funny to just not fancy it anymore, not that I ever did much before. I tend to crave coffee these days, presumably yet another carcinogen!
Thank you too for checking how I am, and I’m relieved to say I think I dodged a far worse outcome thanks to the Paxlovid. Just a slightly phlegmy throat left now, symptom-wise. Ironically, I’d just had the latest Covid-19 vaccination the week before catching it. I imagine I’m very well immunised now!!!
You and I were talking about road trips earlier this year I recall, and you know we haven’t made it away after all. Too many risks with ICE this summer all over California, too many dangerous heatwaves in regions we wanted to visit… I did manage to go on a really restorative solo trip down to San Luis Obispo though and that was good enough for my wanderlust! Maybe we’ll have a winter trip instead 
Hope you’re doing well too @Jonpd, do please keep sharing your wisdom as we newer survivors of Myeloproliferative neoplasms ('MPN') always learn from you.
1 Like
Hello there @Nixter, thanks so much for being so kindly. I know the whole world has already had Covid-19 and is over it but it’s still so scary when it’s your first time!
You know, I couldn’t recall reading about immunity around Blood Cancer UK but there is some information here describing how our various blood disorders might affect out blood cells and thus our immunities: Immune and lymphatic systems | Blood Cancer UK
Blood Cancer UK have shared this information before about Covid-19 vaccines and blood cancer: Covid vaccine efficacy and blood cancer | Blood Cancer UK
The way my haematologist describes it is that my body is expending energy tolerating the Polycythaemia vera ('PV') and its treatments and that anything that can knock that out of sync, like a virus, can take up even more energy and leave me less energy to fend off the virus. It’s kind of like already being at a slight disadvantage, immunity-wise, and so any additional stress like illness can take us longer to recover from.
I hope you don’t mind me sharing here dear @Ceri_BloodCancerUK but your lovely personal post about tolerating illness after a blood cancer diagnosis really describes this so well: Two years post treatment- fatigue and how to pace while working - #3 by Ceri_BloodCancerUK
So I’d say keeping in mind that living with Polycythaemia vera ('PV') does affect our immunity, but that we can learn to note our energy and wellness levels as we come to adapt to these diagnoses. I’d be tempted to ask your haematologist too as they will have their medical perspective and will know your specific health history.
Great question @Nixter and do keep asking them, fellow PVer!
1 Like
Aw I love this @Sal, thank you for your kind support! I see you’ve commented more fully on that great thread you started so I’ll respond properly there.
@Nixter I was initially treated with venesections and then hydroxecarbamide from 1999 to 2023. It allowed me to live a normal life and I didn’t suffer any significant side effects from it. I did suffer from the dreaded itching from time to time but not to the extent some report.
In 2023 I had a number of symtoms which resulted in the Myelofibrosis ('MF' or 'PMF') diganosis, weight loss, extreme fatigue, enlarged spleen, early saiety and pain in the left side ribs. It was not a pleasant experience. With treatment I am down to some fatigue and itching. For me Myelofibrosis ('MF' or 'PMF') has been a whole different ball game compared to Polycythaemia vera ('PV').
2 Likes
Hey all, saw a bit of chat about potential/actual and maybe carcinogens and thought I’d share this graphic. It’s totally impossible to avoid everything that may at some point have enough evidence to be included in Group 1 carcinogen, but I definitely consider limiting everything in Group 1, I don’t smoke but will allow myself the occasional processed meat, (parma ham is my weakness) and the odd tipple. I also don’t use anything non stick and try and use only natural products on my skin and in my home to reduce PFAS/forever chemicals exposure. The irony is I have always done this and here I am on this forum 
I think because blood cancers can be rare a lot of the carcinogen research is based on solid state tumours. Alcohol for breast cancer, smoking for lung etc…
The important thing is to still be able to live your life, but a few tweaks in the right direction can only help xx
3 Likes
@duncan San Luis Obispo is not far from Cambria and Hearst Castle which both have Welsh connections. We visited both on a trip up Highway 1 in a Mustang convertible for my 50th birthday. That was 12 years into my Polycythaemia vera ('PV') diagnosis, for me that was just part of normal life.
Is your Dad going to the MPNvoice forum in Cardiff this year?
I’m ok thanks for asking. I am typing this sitting in hospital waiting for an operation on a finger. Also dealing with 2 skin carcinoma, probably due to the Hydroxy. Other than that, all ok.
2 Likes
Hi Sal - Thank you 
How are you managing with your Essential Thrombocythaemia ('Essential Thrombocythaemia ('ET')')?
1 Like
@Duncan Yip I get that - Covid is very scary, especially for those with underlying health conditions. I have had it back in 2021 and luckily for me it was just the usual viral symptoms and a week in bed, however my mum, a kidney transplant patient was not so lucky and couldn’t fight it. So I will be forever extra cautious when it comes to Covid, and even more so now with my Polycythaemia vera ('PV') diagnosis. I am so glad your team got you on antivirals!
Thanks for the links- very interesting and yours too @Ceri_BloodCancerUK from your personal experience.
Well had my 2nd venesection today at hospital - all went well, other than had to switch arm as the blood from my left arm wasn’t very forthcoming! My Haematocrit is still showing high too, but I expect that is normal given it’s very early days for me. I have to go back in next Friday for another vs.
3 Likes
@Jonpd I’m glad you managed so many years without many side effects from the Polycythaemia vera ('PV'). I am sorry that you were then diagnosed with Myelofibrosis ('MF' or 'PMF') and didn’t have a pleasant experience. How are you managing with the fatigue and itching now - is it continuous or does it come in waves?
Hope all goes well with the finger op/skin carcinoma!
2 Likes
@Spangleystar Thanks for the graphic - its actually really interesting - I was aware that the processed meats probably were carcinogenic, however hadn’t heard that red meats probably were too. I’m definitely going to try and live a cleaner lifestyle, while allowing myself the odd glass of wine.
3 Likes
Interesting graphic @Spangleystar and thanks for sharing
1 Like
Ooh this is great, thanks @Spangleystar! Thank goodness coffee’s carcinogenicity is “not classifiable” as I had furious visions of me swearing at blood cancer to get away from my beloved morning caffeine, like Ripley protecting Newt from that queen in Aliens
2 Likes
Oh yes it’s a surprise how these very Welsh place names crept all the way over to this coast @Jonpd, even as last names—there are many Joneses, Davies, and Rogers here, sadly mostly via enslavement I think.
I nearly took a day trip to Cambria while I was down that way but even there the afternoon sun was too much! Instead I found cooler spots to sit and do my writing/editing after busy mornings dragging myself up the strange Nine Sisters volcanic cones all dotted about SLO, so beautiful. You had such a cool 50th, an inspiration for many living with these Myeloproliferative neoplasms ('MPN')!
Unsure if my dad will attend the conference this year, we’ve had a recent family bereavement which is taking up emotions and energy, as you can imagine. Maybe he’d find it helpfully distracting, I’ll see what he’s planning.
I must say I am so sorry about you being in hospital with those carcinomas @Jonpd, oh goodness. Hopefully the operation has been a total success, do please keep us posted if it’s not too raw a subject.
And just to put my support hat on for a mo, if there’s anything the forum can do to support you do say, or perhaps it might be better coming from the Blood Cancer UK nurses, so please reach out if you need to. Take care, thinking of you.
2 Likes
Oh @Nixter thank you, and I am really so very sorry to read of your close personal experiences with Covid-19, you and your poor mum. Apologies if I’ve been a bit cavalier about my recent experiences. Please don’t ever hesitate to say if topics that come up on the forum are difficult to tolerate and I’m sure we can dial it back a bit.
Sounds like you might be an ambidextrous bloodletter, I’ve had to swap arms on a couple of occasions too. There was once early on where I was so zoned out the week of phlebotomy that I’d forgotten to hydrate properly and my lovely nurse Ama was like “oh honey your blood is thick like molasses today!” The whole ward laughed at that, or it felt like it at least. Trust your phlebotomists!
I’d say from my non-medical point of view that a higher haematocrit soon after diagnosis is to be expected, but for me it did come down pretty fast once the lettings became more routine, so try not to worry right now.
Have you been told the percentage the phlebotomies are aiming for? It seems to be 45 % for most of us around the forum. Just make sure to report any strange or painful symptoms straight away to minimise clotting risks, which should decrease as your haematocrit does.
And I just want to check you’re treating yourself after these medical appointments @Nixter, we deserve a nice moment to ourselves after these sorts of procedures I reckon!
2 Likes
Hi @Jonpd
Hopefully all went well with the operation.
Sounds like a few challenges at the moment and hopefully things will get better in the coming days and weeks 
2 Likes