Polycythemia

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Hi does anyone else have Polycythemia or have information you can share. Im new to this group but I have already found so much useful information. It would be lovely to talk to someone who has had simular  experiences

  • Hi and a very warm welcome to the online community which i hope you'll find is both an informative and supportive place to be.

    That's great to read that you've already found lots of useful information but it's natural that you'd like to be able to chat to someone else with polycythaemia.

    As you know the online community is divided up into different support groups so can I recommend that you join the MDS & MPN group as it also covers other blood cancers like  polycythaemia vera. If this is something that you'd like to do clicking on the link I've created will take you straight there where you can then join and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember

    Hi Billie, I have Polycythemia, diagnosed about 9 years ago. I'm 51 and busy mum running my own wedding dress design businsess. Keen to keep energy levels up! I was just on aspirin and occasional venesections to keep my haematocrit down, but that didn't always work, and platelets got worse, so have been on anagrelide for a couple of years. This has solved platelet problem but not really bringing down RBCs and spleen seems to have got a bit large.  I'm about to start on hydroxycarbamide. Bit worried about potential side effects. How're you doing? All the best, Caro 

  • Hi, I got diagnosed with Essential Thrombopenia which is in the same small group of blood disorders. I start treatment Monday, all a bit of a whirlwind to start isn't it? 

  • FormerMember
    FormerMember in reply to Jojaxanory

    Hi Jo, thanks for the reply. Sounds like we'll both be starting on the same day. Yes, feels a bit shock to the system, after several years on existing drugs and not really thinking about the disorder progressing anywhere. Hope you're feeling ok about Monday. Reading any good books at the moment? I'm half way through "Chatter" by Ethan Kross. Have a good day x

  • I'm only on asprin currently until the chemo kicks in. I'm reading a brilliant book by Louise Hay called A Lady of Hay.  I'm also meant to be reading a book for Book Club but can't focus on it (shhhhh)x

  • FormerMember
    FormerMember in reply to Jojaxanory

    Ooh, i love Louise Hay - haven't read the one you mention, but have read another of hers. Also found a couple of good videos she did which I sometimes just leave playing in the background when I'm working. I've never belonged to a Book Club for exactly that reason LOL. x

  • It's a really interesting one about past lives.  I've belonged to a couple of book clubs before but maybe this one is wrongly timed! I've never got on with talking books but I love podcasts. How are you feeling about your new treatment?x

  • FormerMember
    FormerMember in reply to Jojaxanory

    Interesting. I have to say I think that's one subject I'd be fascinated to delve into. Let me know when you get to the end of it if it's worth the read! Likewise, I haven't taken to talking books, but ditto over podcasts.

    Thanks for asking - I feel ok - it's taken me a week or so to just get my head around it, and I asked an expert in the tab above, all the questions which I didn't ask at my last appointment. It's funny isn't it... I go along with a list of questions, they all get answered, but it's only afterwards I think of a heap of other things I didn't ask.

    I have a friend who had open heart surgery last year, which I also had a few years ago, and I was all about the questions and the detail. He was not remotely interested, and when we talked about it, he said "what's the point" "they're going to do the op anyway and then let me know how long I'll be off my feet, so I may as well just let it take its course and not worry about it".

    Fortunately, we were both fine and recovered fully, but looking back, I think I do sometimes over-analyze!!

    So now I've got passed the catastrophe-mode-of-thought, I'm just trying to get myself in a let-it-take-its-course, and also just gently making a few plans to try and cut back on some of my committments so I can not feel like each day is full.

    How about you? x

  • OOh I'm fascinated in past lives, reincarnation, mediumship all the woo woo stuff lol. Yes it does take some adjusting, I feel a slapped round the head as I didn't 'have it' 5 weeks ago. It sparks an avalanche of appointments, phone calls and letters doesn't it. Hugs for the open heart, Mum had that a few years ago and I know it's a heck of a recovery.  I always catastrophize, I should have a degree in it.  What else do you do when you are awake at 3 am but read up on the latest illness? I have a few other conditions so already have a fairly sedate pace of life.   I prefer to look on it as I have as much time as I want now to read hehe x

  • FormerMember
    FormerMember in reply to Jojaxanory

    Oh gosh, Jo, I hadn't picked up that it was such a new diagnosis. Yes, such a shock. Yes - the appointments just seem endless...although they do seem to peter out into a sort of routine. I was diagnosed 9 years ago (I think!), and after the initial flurry, they've sort of settled into a once every 3 months routine, which is manageable. 

    It's hard to tell whether this recent ramping up and change of treatment is drastic or whether it will settle again for a few years. Just have to wait and see.

    Thanks re open heart - hope your mum recovered well also from it? Isn't it amazing what everyone has going on, and you look at people in Tesco etc and just assume they're all perfectly healthy!.

    Sorry to hear of the other conditions you have going on - you wanna share? Not sure it will help but you're welcome to download. If this isn't the place, I don't know where is the place!

    Apart from epilepsy, which is managed, and not being arsed to get myself off the sofa enough to take enough exercise to get fit (LOL), I think polycy is the only other thing I have going on.

    I run my own business making wedding dresses, have a 10 year old, Holly, so life is pretty full on, but generally full of good stuff. 

    I know what you mean about the wakefulness. I have always lived under a cloud of anxiety, but since starting HRT recently (I'm 52), and reading a shed load of self help books, I'm finding I no longer get quite so consumed by it and can usually access something in my mental tool kit to get me back to sleep. 

    Now. Back to reincarnation...

    So, I did start reading about budhism as they're all about the reincarnation. Any thoughts, or do we not know eachother well enough? LOL 

    Have a good day xx