Exactly @Erica! I never used to feel this free on social media, whereas here my ‘name’ is just an anonymous identifier which frees me to be open and yet maintain privacy, or so I hope!
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Perchance they are famous people but you wouldn’t know unless they said who they were and even then you’d be a tad sceptical as there’s no way to verify it…a bit like reincarnation stories as a lot of famous folk seem to get reincarnated given the tiny percentage of the population they represent!A lot of Napoleon the Firsts but not many street sweepers! With Stem cell transplant that figure depends on your overall health and the oncologist told me it’s more like 5 percent with me as I don’t have any other conditions but say that I had a heart condition and Diabetes the survival odds are decreased.Still 5 people in 100 is still a rather significant amount of people not surviving.
Hi all,
I just wanted to pop in here to share some more stats and information about Polycythaemia vera (PV) that we’ve found and thought you may be interested in based on the original question.
The Haematological Malignancy Research Network states that the current incidence (newly diagnosed cases) of Polycythaemia vera (PV) is 1.8 in 100,000, or 1140 people each year in the UK. Also, that there are an estimated 8,810 people in the UK living with Polycythaemia vera (PV), which accounts for 3% of all blood cancers.
The factsheet we found this data on is here: HMRN - Factsheets As always with stats, remember that they are showing averages of a large group of people rather than individual circumstances, so may or may not reflect your own experience.
Also, to let you know that our information on Polycythaemia vera (PV) has recently had a full review and been updated here: Polycythaemia vera (PV) | Blood Cancer UK We also recently added this information about itching to further support people with Polycythaemia vera (PV) and other blood cancers: Itching | Blood Cancer UK
I will check in with our health information team as to whether we are planning to create any more specific information on Mycosis Fungoides and keep you posted if so.
Finally, just to share my best wishes to you @Kevan7 for your stem cell transplant. If you have any questions or we can support you at all, please don’t hesitate to call the support line: 0808 2080 888
Kind regards,
Ali
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Wow so only 1.8 of us per 100,000 will be diagnosed with Polycythaemia vera (PV), and 3 % of people living with blood cancers have it?! Definitely seems rare when put like that.
Just read the updated Polycythaemia vera (PV) information @Ali_BloodCancerUK and wanted to say thank you, it’s really excellent and written so clearly. I’ll be sharing it a lot!
Interesting that there’s mention of families with the occurrence of faulty genes as I have a close relative with an Myeloproliferative neoplasms (MPN) related to my Polycythaemia vera (PV) but have noticed doctors are hesitant to link our uncannily similar yet rare blood cancers.
Thanks too for the updated information on itching, it’s a relief (pun intended) that there are so many ways to manage such an irritating side effect of living with Myeloproliferative neoplasms (MPN). Glad to see CBD mentioned which I personally find better for reducing inflammation from bumps and bruises than itching.
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Thanks so much for your comments Duncan - I’ll be sure to pass them onto our wider team too 
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Roughly speaking 2 people in 100 000 have Polycythaemia vera (PV) then which makes it pretty rare.With Mycosis Fungoides the figures are all over the place and they say 1 person in 100 000 to 350 000 with is a massive difference and sometimes the figures are given for all Cutaneous T Cell Lymphomas so you’d have other ones like Large Cell Anaplastic Cutaneous, PCTL NOS Cutaneous, Sezery Syndrome,NK Nasal Type,etc but they are rarer than Mycosis Fungoides but all together would form a significant amount of the CTCL’s.
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Wasn’t expecting to find out about a famous blood cancer survivor from a music website, but here we are @JanetF!
A member of The Cure survived lymphoma treatment last year, how very apt! Funnily enough I saw them live last year and found it very poignant, being alive at a gig wondering selfishly if there’d ever be a cure…
Now if only @BloodCancerUK-SupportTeam could get him as some kind of ambassador!
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I saw that article about him but it doesn’t say what it is other than Lymphoma and it’s rare.No details if it’s B,T or NK Cell.
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We should totally email him/the band to see how he’s doing and invite him to the forum 
Maybe he’s already on it but not saying who he is!
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Well that did cross my mind! Is that you, Roger?!
Funnily enough Blood Cancer UK is quoted in the Independent article about his diagnosis 
There’s a few articles about it in different media titles and all regurgitated from an original source .Also Macmillian is mentioned too.Well he narrowed it down a bit to some kind of Lymphoma unlike King Charles where it’s narrowed down to not being Prostrate Cancer leaving loads of others but I suppose we can rule out the other commonish P cancer,Pancreatic Cancer,as he’d most likely be pushing up daisies by now had it been that!
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Hi, @Duncan! Well, that’s interesting, isn’t it? I hadn’t seen it reported elsewhere before, but since you posted it I have seen it popping up in various places.
Perhaps he is here, retaining his anonymity behind an anonymous username…
Wouldn’t it be great if the name of the band were to foretell what is going to happen for us all this Blood Cancer Awareness Month?
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Ha indeed @JanetF! Rather uncannily I saw The Cure last year, and another favourite band, First Aid Kit, around the time I was diagnosed which I certainly didn’t take as good omens, oh no 
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Ha ha, @Duncan! 
Perhaps we should have a tangential thread from the Friday jukebox one, featuring medical-related bands! Or we could broaden it to medical-themed songs, including - or perhaps especially - ones whose lyrics weren’t intended that way.
For probably obvious reasons I’ve now got Oh blood-y, Oh blood-ah going through my head! Sadly, I’ve just looked it up and it’s spelled Ob-la-di, Ob-la-da, which works far less well for a blood cancer forum!
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Ha ha ha yes imagine if we themed our jukebox choices around our diagnoses! Don’t tell anyone but I do sometimes anyway 
Well, now we unofficially have The Cure as our musical ambassadors!
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Absolutely!
Not exactly known for the brevity of my posts (or of much else in my life, for that matter…), I tried to reply just now with ‘Absolutely!’ and got a message saying that posts had to be at least 20 characters long! Well, there’s a first time for everything! 
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Like most of us I did a lot searches on the internet regarding Polycythaemia vera (PV) and read somewhere that it was more prevalent in Norse countries. My maternal grandparents were Danish. I have had two GPs tell me Polycythaemia vera (PV) isn’t a cancer but not felt well enough to argue with them. I suspect they are not up to date with their knowledge. Most of the Medical Centre staff had never heard of it. They have now! Marylin
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Hello again @Marylin, how fascinating! I hadn’t heard that about a greater prevalence of Polycythaemia vera (PV) in Scandinavians. I’d love to read about that if you could share.
Like you, I’ve got Nordic heritage, although not as recent as grandparents. It’s one of my favourite regions in the world, I’d love to visit Iceland again, and Denmark. Reminds me of beautiful craggy North Wales.
It’s such a pity that so many people around the forum have experiences of being told our blood cancers are not blood cancers. Myself included, from my first haematologist! Hopefully there’ll be a time when you have the energy to update your GPs, but in the meantime could you write down what you’d want to say to them? I’ve got a few terse draft copies of letters awaiting my former haematologist, should the mood strike me.
Your attendance at the Medical Centre is already helping others living with, or yet to find out about, their own blood cancers so consider that an achievement, I’d say! Through our advocacy with our doctors we can help them understand what it’s like to live with Polycythaemia vera (PV).
I get the impression, from attending a blood cancer conference earlier this year, that Polycythaemia vera (PV) was only reclassified internationally from a blood disorder to a blood cancer in the early 2000s. That might explain why so many doctors don’t seem to have updated their terminology. I’m sure we can update them too!
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I am sorry but don’t know where I read that about prevalence in Scandinavia. My Danish great grandmother started the first margarine factory in this country, no great thing if you remember how horrible margarine used to be when I was young in the 1940s. Try putting Polycythemia Vera re Denmark into Google, some interesting info came up, but always remember a little knowledge is a dangerous thing!
Today I am feeling a little better, there is no reason why my health is so up and down. It makes it difficult to plan anything. Some nurse rang yesterday about breathing classes, a 6 week course to get me fitter, two hours once a week. It would be nice to be fitter.
Sadly it is raining so cannot plant some of the spring bulbs that came yesterday. Will just have to read a trashy novel instead and maybe put the heating on it is so wet and cold. Marylin
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