MPN Voice
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I am a Transformer

Not the kind that my grandsons like although I can change if my husband snores too much lol .

I went for my appointment today and I now am a combo ! As the heam put it .

I am now ET /MF .

My spleen is only up a little bit by 2 cms my platelets have gone up to 540 only a little bit more too . My hb is 11 and whites 7 ( all in old money ) .

The heam was lovely and said there was no need to increase the hu or do anything else at the moment as I could be well for many years and to keep positive.

The whole thing is a relief really as my initial diagnosis was in favour of ET may be transforming to MF .

I am going back in 6 weeks as I'm moving house and going back to West Sussex and will have to go to a different hospital . I have to say Hinchingbrooke Hospital in Cambridgeshire have been brilliant .

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Don't worry Helen ,,I was told 7 weeks ago ,I'm not a PV anymore ,,I'm a full blown mpn ,now !! Shown up by my bone marrow exam ..but I went yesterday to clinic ,my bloods have settled down again ,everything was hunky dory again !! Iv been on the spinnage and fresh green diet ,,been zapping with my nutri bullet ,fruit and vegs ..it's so amazing how well it effects my results ..so my buddy ,,hang on in there ! Keep strong and positive ,,life needs to be lived to the full ..love twinkly. Xxx

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Thank you Twinkly you are a real inspiration .

I love all veg too but I'm a bit of a chocoholic .

I love all the advice you give so thank you again .

Helen xx

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Helen I must say you have taken it very calmly, , but then again flying into a blind panic doesn't alter facts so it's a good approach in my view. . Like your hem says you're already on HU, your spleen is slightly ?enlarged, and the good news is that at some point you may have 2 or 3 jak inhibitor drugs as back up down the line. . And as you put it it has come as a relief to you coz I guess you been waiting for it at each apps. . .Hope your forthcoming move goes well and your new hem as good or better than your current one. .

MF can be a very slow burner and has as been said many times everyone is different also so you crack on with your life and don't let it intrude too much.

Cheers Chris x

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Thank you JR I can't believe you are answering me with all you have on your plate .

What I mean by my spleen is that 18 months ago when I was diagnosed it was so called normal and has now gone up by only 2 cms so maybe I am a slow burner does that make me hot stuff but not in a good way haha .

Now go back to bed and behave !

Helen x

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Hi Helen sorry to hear about your transformation. JR is right, you do seem very calm about it and that is amazing. Fingers crossed that you continue to feel ok for a long time to come.

When I was diagnosed with ET nearly 3 years ago there was no mention of measuring my spleen, nor since. I am interested to know if this is something that is normally done regularly?

Good luck with your move.

Karen x

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Hi Karen

No don't think it's done regularly I had fibrosis on my BMB so that's why they dig around my flab .

I think I'm calm because I am a knowledge is power kind of person and like jr said I was waiting for this news at every appointment .

Hope you are well too

Helen x

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Thanks Helen for the explanation. I also like to have as much knowledge as possible so I am always asking questions!

Karen x

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Hi Helen, so your a combo now are you haha ,never heard it called that before , but agree with our friends you. have a great attitude , and live your life as you have been im a slow burner too ( nearly. put slow cooker ) Im also bad with chocolate doesnt help when friends buy it for me i need to stop it im sure we are what we eat at times keep well my friend. and im sure next hospitals heam. will be as nice like the one in Cambridge best wishes Holly xx

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They look after me as well. They are so very kind whilst being so clear about the information they give. I wish you well.

Susan

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Hi Helen , your so positive I like that ,

I'm sure your Determination will keep you strong , I' also have ET , how did they detect you had MF ? , were you poorly

Or purely from your bloods , it's always in back my mind if I'm getting the best care

Just I very rarely see my Consultant he always sends his understudy , !!!!

I wish you all the very best in your new Home & Good luck with your new Consultant ,

Pam x

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Hi Pam

Initially I had come back from Jamaica and after spending too much time in the swimming pool doing aqua aerobics looking at a very good looking instructor I thought I was sun burnt . I was going crazy with itching and burning on my feet . I was working as a charity shop manager and was exhausted but thought that was part of the job I'd been doing it for 14 years .fter 6 weeks of the itching and burning my husband finally persuaded me to go to the GP who sent me for a shopping list of bloods . My platelets came back 1072 and whites 22 . Two weeks later I was having the BMB which showed more fibrosis than I should have so the he am said I was ET but might be transforming so it's always been a possibility which is why it's a bit of a relief to know .

I think I've been very lucky with my GP and hospital .

Lots of people in the world worse off than me I say .

Helen x

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Hi Helen ,Goodness good job you were checked out that's high Platelets , I found out about my ET due to a TIA 2yrs ago 875 platelets so I never want them that high again scary it was , I was 51just a baby it still haunts me !!! lol ,,,

now there 430 still to high for me tho consultant wants them 300 ish ,

I hope you continue to have good results & keep strong x

Pam x🙏

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Hi Helen. I was where you are now four years ago. I was not expecting it though so maybe was not quite as calm as you sound. As JR said, it can be a slow burner so not worrying about something that we can't change seems the best advice and with all the research into MPNs that is happening at the moment we seem to be in the the right place at the right time.

Pam, I changed consultants after a move and she took one look at my results over time and said it looked like I had some fibrosis. I had BMB and she was right! I hadn't really felt much different at that time.

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