Anyone heard of polycythemia vera? So worried about DM

[noarguments]

I know its something to do with too many red blood cells, and she has high platelets too. She has been deteriorating fast and has just been diagnosed - apparently her readings were off the scale. She has had a pint of blood taken on friday at the time of diagnosis and will do again on tuesday - to thin it I think. They must be worried doing it on a bank holiday. And she has been given some tablets that are apparently given to people with cancer. She has also got various other investigations - chest x ray, endoscopy etc.

Can anyone just reassure me that the symptoms can be managed, I'm really scared about blood clots (her blood is so thick its like jelly at the moment) causing stroke or heart attack - already high risk - heavy smoker with high blood pressure.
Thanks.

bump

any blood / bone marrow experts out there this morning?

Not an expert but have limited medical knowledge (nursing) But I too have raised haemoglobiin etc and am seeing a haematologist next week. I have reasonably controlled BP non smoker and not that overweight but polcythemia is ringing medical bells. I know this is not helping you but couldn't leave your post unanswered. My appt is the 15th june I will let you know. BTW how old is your mum? I am 68 shhh

My mum had essential thrombocythaemia (ET) which is one of the same group of blood disorders. It was diagnosed when she was in her late 50s and managed successfully by medication (including chemotherapy at one stage) for many years with no major ill effects. I always remember reading somewhere that such patients can expect a "near normal life span" which always used to reassure me. She died last year aged 76 from heart failure with ET as the underlying cause. Here's one of the websites I found useful because it explains things simply: www.mpdvoice.org.uk/. Hope you get some good news soon.

I should add there are a number of drugs which directly or indirectly control the thickness of the blood, as this is your concern. It can take a while to get the balance right and as with all drugs there may be side effects to consider.

I am 66 years old and was diagnosed with Polycythemia Vera 4 years ago.
For me the most challenging part of PV was getting the diagnosis. Once you have the diagnosis, this disorder is normally quite treatable. Treatment usually starts out with phlebotomies(bleedings). If additional intervention is required drugs are introduced. The cause of this disorder was only determined about 5 years ago and very promising drugs are now coming on line. For many, the old standby drug, hydroxyurea, is effective and because it is cheap is prescribed over the newer drugs which tend to be exponentially more expensive.

There is no doubt that this is potentially a very serious disorder but for most,
it is quite treatable. For those with PV some patients live for 20 years and more with minimal intervention. This is by no means guaranteed though. Your mother would do herself a huge favor by putting down her cigarettes and lacing up her walking shoes.

Thank you all. Sorry internet connection was very patchy yesterday, so couldn't post.

Mum is 76 and considers herself too old to give up smoking, whatever anyone else says or suggests - which is why she left it so late to go to GP - didn't want to just be told to give up smoking. She also fell down the stairs last summer and since then has definitely been less active.
2nd "bleeding" today - she is still feeling and looking very unwell, and is mostly in bed, not eating much, has lost so much weight, sleeping loads, and generally going downhill. Lets hope they can balance things quickly. My poor Dad is 82 and is worn out with worry. They have two of us within half an hour, so we are helping but I don't think he's sleeping much.

Thanks. Feel a bit reassured by you managing it on ongoing basis Margate.

Margate you have no idea how much happier you have made me feel. Am seeing haematologist next week, GP has hinted at P.Vera and my mind has been in overdrive!! I have had numerous blood tests including KAJ mutation which affects the bone marrow which makes me suspect P.V. did you?
May I be nosey and ask what your symptoms were/are.
So glad to see someone else with maturity here
noarguments sorry your mum is not too well. Tell her I said to stop those fags life is too precious

I've tried and tried to get her to stop. Perhaps this is her wake up call.

Just looked at that website too - thanks Farside - its very helpful.

My mum has this, she was diagnosed about 3 years ago. She was quite unwell until diagnosis and went through all kinds of other tests. She is 72 now and it is controlled by medication that she takes everyday. The meds do have some side effects but she copes with it. She has just had surgery which is always a bigger risk (unrelated surgery) and she has been fine.

It was very scared at the time and I also panicked when I found out that the drugs were the same that they give for some forms of canc but it is treatable and manageable. Despite my constant nagging she also smokes.

My dad was diagnosed with this at least seven years ago (by chance really; he went to the GP about something else and she noticed he was rather red). He still leads a full life (rather too full IMHO ) and is 68.

His is mostly managed by interferon (I think) with the occasional blood let.

Main downsides: he gets tired more quickly than he used to (although see above about doing too much!), he can't really drink (he wasn't a big drinker, but loved a glass or two of red wine - anything over a glass makes him feel really crap the next day - but that's about it.

To be honest, the scariest thing is at the beginning. I remember bawling thinking 'my dad has leukaemia. My dad has cancer' (er, not even sure if it even comes under that category) and FGS whatever you do, DO NOT GOOGLE IT!!

People with it (untreated) are at a much higher risk of strokes so it really is worth your mum giving up smoking. My dad's brother died of it but no one realised at the time (he was also a smoker, so a stroke wasn't entirely unexpected). My dad has told his other brother that it looks like there's a genetic link but he won't even get a blood test.

MinnieBar like your dad I am 68 and do far too much still have 5 DC's at home all with SN 2in wheelchairs. What I find surprising is the alcohol more than 1 glass I too am crap. I do think it is hereditry some gene mutates that affects the bone marrow but don't quote me.

Oh goodness 2old that really is a lot on your plate - when my dad has overdone it, it's more that he's played too much golf and has had too many meals out - you really have your work cut out.

Do you get much support?

Thanks MinnieBar Don't be too nice or else I'll cry as I am feeling useless. All our DC's are adopted so its our fault we could have said no but the front door is now locked! The youngest 2 (6 & 13) have complex needs so we get a good package from the NHS 5 nights respite /month. The eldest 3 Downs are

adults so forget it but they are a delight--but need support.
Send my regards to your Dad and I raise an empty glass to him.

Crikey. I'm not going to be nice and make you cry, don't worry, 2old, but you are clearly not in any way shape or form useless.

Reassuring that other people not only have have heard of this but are living full lives with it. It was a complete scary unknown to me. Just a case of getting bloods right - third blood letting session tomorrow - still no change in her fatigue or appetite - fingers crossed it will start working soon.
Thanks everyone for your help.

Guess what the bloody (excuse pun) haematologist has cancelled clinic for next week for a 2 weeks!{holiday) Endocrinologist I was due to see yesterday (I had arrived at hospital 60 mile round trip) was on holiday roomfull of irate patients all sent home Final straw DD's appt postponed by 2 weeks today. Guess what too lethargic to get cross so here is all I can manage.
Good wishes to all who feel crap!

Wondering how you got on 2old?
Mum's blood seems to have settled a bit, she is now on medication, but not having to go for "bleedings" every 3 days which is easier, although she will be monitored closely. BUT she is still not feeling any better, 3/4 weeks since diagnosis and the start of treatment. She has no appetite and really is not eating very much at all. She is sleeping a lot of the time (a bit like a baby - up for an hour or so then has to go back to bed again - at least she's sleeping through the night though!), and has no energy at all. She only gets dressed if she has to go for a hospital appt. The transformation in 4 weeks is frankly terrifying. She is grey, listless, grumpy, skin and bone. etc. My Dad has suddenly become a full time carer.
Does anyone have any experience - does it take a while to perk up? Will she perk up? Or (as we all quietly fear) is there something else going on - she has various scans, ECGs etc etc ongoing we're waiting for results. They found what the GP thinks is a non-threatening small shadow on her lung, but obviously we're worried about that too.

Words of reassurance would be very welcome.