There are Canadian, Australian and New Zealand sites too plus there’ll be other sites not in English although the information on the more unusual cancers are pretty much the same world 
wide.The doctors all seem to share information internationally so you don’t really seem to get a treatment in one country which doesn’t exist in another.
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Very good point @Erica, you’d hope there’d be unified treatments worldwide for certain blood cancers based on shared research and findings, but perhaps not!
It amazes me that there’s so many different blood cancers and of course it must be harder to research and share information regarding super rare types when so few people live with them, like @Kevan7.
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You can generally go on how rare they are based on how many famous people have had of them.Lung, Pancreatic, Prostate,Colon Cancers crop up at lot.With T Cell Lymphoma not often;Paul Eddington of the Good Life and Yes Minister fame expired from Mycosis Fungoides,Mr T AKA B .A.Barakus of the A Team had one of them subtype unknown and I think that he’s still with us and Sam Neil of Jurassic Park has Angioimmunoblastic T Cell Lymphoma.
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Mustn’t laugh but that’s very true that we tend not to hear about this stuff unless someone famous experiences it! I’ve never heard of anyone famous having Polycythaemia vera (PV) like me, but there’s a vile US politician (who I won’t name here) with a different blood cancer who claims he’s in remission even though it’s apparently impossible with his type 
I’d never heard of said gentleman before but I think that I found him and he is from Louisiana and has Myeloma.
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Sounds like the one I’m thinking of too. Wonder where he got that incorrect info about remission, you’d think he’d have access to more accurate healthcare being in government?!
Possibly got the information from God as many American politicians are very enthusiastic about such matters particularly in the south east of the nation!
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Indeed, the Deep South isn’t called the “Bible Belt” for nothing! I happen to live in a region of the US where all belief systems are respected to some extent and thus none take precedent, which suits me better.
And me as I am probably a Pantheist or Panentheist!
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Well, in that case California would likely welcome you too @Kevan7!
Hi, @Duncan and @Kevan7! It’s true that we tend not to hear about this stuff unless someone famous experiences it. When I was first diagnosed with Polycythaemia vera (PV) and looking at all sorts of information online, from the general (yes, Wikipedia!) to the very specialist (lots of academic research papers from various countries), I saw that three people that whoever had put the Wiki entry for Polycythaemia vera (PV) together thought were sufficiently well-known to be named as having died either with or from (hopefully with!) it were included, but I hadn’t heard of any of them! I’ve just had another look at the entry and here it is:
Closer to home for most people on the forum, I almost leapt out of the shower earlier this month when I was listening to the podcast of Radio 4’s A Point of View with Will Self and he said that he was going to have a stem cell transplant in a few weeks. I remembered from hearing him talking on the radio years back and from reading things he has written about it that he had blood cancer, but it hadn’t really meant anything to me until now. I had a quick look online and apparently he had Polycythaemia vera (PV), which has progressed to myelofibrosis.
I’m sure he will give an update on it all (probably on A Point of View!) once it’s all happened, but for now we have someone to add to our ‘famous’ Polycythaemia vera (PV) people list!
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Ha I hadn’t heard of those 3 either @JanetF! Will Self though, that’s someone whose writing I’ve enjoyed over the years. What a pity his Polycythaemia vera (PV) transformed to MF, although from a quick google it sounds like he had a nice long time living with the former. I hope his MF is manageable for him.
I wonder who else in the public eye might know what we live with? Perhaps even the king or his daughter-in-law. Would be good to get some famous public support…
Will Self is the only one of those people who I’d heard of and I see that he has Myelofibrosis which is the one that I was thinking that Carl Sagan expired from but I see that Sagan’s was Myelodysplasia.They both seem to be similar to Leukemia.Sadly for Sagan several Stem Cell Transplants failed to save his life.I have mine,Stem cell transplant,mid September.It’s a risky process as it has a 5 to 20 percent chance of causing the death of the person having it.However in my case I don’t have much choice as if I don’t the Mycosis Fungoides is likely to see me off.
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Hi, @Duncan! Yes, getting some famous public ‘support’ from a high-profile celebrity sharing their diagnosis would undoubtedly be the best way to raise the profile of Polycythaemia vera (PV) and MPNs generally, but obviously we wouldn’t want to wish that on anyone just to raise the profile, however handy it would be for spreading the message and widening the understanding of MPNs! The king would be a jolly good place to start, but I don’t think it’s likely! 
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Hi, @Kevan7! Wishing you all the best for the stem cell transplant next month. I’m never sure if decisions are easier or not when you don’t really have much choice, as is the case for you with this, and from what I have learned about SCTs recently, I know it’s not an easy thing to go through, but I wish you all the very best for it and we’ll look forward to hearing from you on here about how you are doing.
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Ah Carl Sagan too?! I was reading about Myelodysplastic syndrome (MDS) recently due to its overlaps with Myeloproliferative neoplasms (MPN) like mine, it all sounds terrifying but then so did the Polycythaemia vera (PV) statistics initially 
Really so sorry to read those percentages with your stem cell transplant @Kevan7, that’s got to add an extra level of stress regarding your treatments. I’ll be keeping my fingers crossed that you’re in the 80-95 % of successes.
Just sharing the Blood Cancer UK information on myelodysplasia here in case it’s of interest: Myelodysplastic syndromes (MDS) | Blood Cancer UK
Indeed @JanetF, I’d never wish these blood cancers on anyone. I was saying to my other half just now that wouldn’t it be great if some members of the forum are actually famous people, that they’re here for the same reasons that we ‘commoners’ are, sharing and learning and supporting?
Of course, we know how exhausting all this can be just coordinating our care, let alone living with all the specific side effects from the different treatments we have and the cancers themselves that can cause so much fatigue. I don’t imagine even famous survivors would have much spare energy for advocacy either!
Hi, @Duncan! Well, this is the point at which I remove my mask and reveal that I am in fact… No, not really! 
But seriously, it would be good for our rare blood cancers to have a higher profile, although ideally without anyone well-known being diagnosed with one and thus bringing them to the top of the news agenda - or even just higher up it. Perhaps one day…
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Ha ha ha well I did wonder 
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