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Yearly appointment to my Haem, ET with CALR postive

Yearly appointment to my Haem, ET with CALR postive

Well what can I say? but yay! Platelets down again to 601! All other blood values normal! and i looked too well!! Although turning 65 in Feb 17, he is not ready to start HU! Which I was very happy about. He did mention I would need it oneday!! He also stated that he does believe this is the best drug to treat ET, when the time is right. So I keep an open mind.

He wants to see me in a year with blood tests being 6monthly. All and all a great visit.

Lyn NZ

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That's good news Lyn. Do you know what is reducing your platelets, bearing in mind that you are not on HU?

Thanks

Judy

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HI Judy thank you for reply. It is very puzzling about these platelets! The highest mine have been in the passed year, since diagnosis was 975. At that time I was highly stressed! Ended up in ED with heart palpitations. I think stress and anxiety have a big part to play in this problem, but off course this is not proven evidence! My Dr did tell me in the beginning, that blood values can change 10% but going from 975 to 601 is great. I am now relaxed, my mind is calm, and I thank the Universe everynight before I go to sleep!!! Ps I am having a very healthy diet, water, and walking everyday. Luv Lyn x

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Well done Lyn, I must say you do look very good for your age. Isn't it interesting how the haematologists in New Zealand appear to 'look at the whole picture,' whereas here it's pretty much cut and dried once you hit 60 you automatically become 'high risk' and treatment is commenced? I wonder if you being calreticulin+ is a strong factor in their decision. It must be a great relief for you another year without hydroxy.

Good Luck

Mary x

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HI Mary, thanks for your reply. Yes I did mention to my Dr today that in the UK, 60 is the age when you have to start HU or something similar. He didn't really comment about that. But rest a sure if I had ever had TIA or DvT I would have to go on HU. The other point that you correctly mention, I am CALR which to my understanding the better gene mutation to have. Less risk of clotting!! Yes I will continue into the new year with a positive attitude and enjoy each day as it comes!! Lyn x

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Great news - well done..!

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Thanks Andy, very pleased as you can see. Hope you are keeping well. Haven't seen you for a while. Lyn

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Thanks - still doing well but at hospital just now for an eye check up to ensure interferon isn't doing any damage - fingers crossed..! Really want to stay on Pegasys as it is controlling my platelets well and easily...

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Hi Andy

Pegasys is what your dr has prescribed you to take?

Thanks

swess

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Yes - I’m currently on 45mcg every 3 weeks and hoping to stretch out to 4 weeks soon

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Awesome! Good to hear from you and you are doing well..!

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Haem told me my platelets would jump up when I got to 60 and they did! So I was started on hu. As you don't look anywhere near 65 maybe your platelets haven't realised you're over 60! 😄😄

Hope you continue to be well

Best wishes

Lizzie

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Hi Lizzie, are you also calr +ve? What is your count at the age of 60? My doc told me different people will have different reaction. Just i am keeping my fingers crossed that my count does not shoot up. I am currently age 47 this year

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I haven't had the CALR test, so don't know! I am JAK2 negative. My counts were ok last time, hoping they stay like that!

Hope all is going well with you.

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Wow that's great Lyn 😃

I'm calr too 55 yrs old but unfortunately my platelets were over a million last week and as I'm also battling kidney cancer I've been put on HU for two weeks before surgery on the 12th to remove my left kidney . hopefully this will lower them for surgery .

Can I just say you look amazing at 65 , what's the secret ! 😃

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Hi Lyn

Good to hear that your count has come down.. I am also calr +ve and currently no medication yet, not even aspirin as doc mentioned that I have risk of bleeding, thus not starting aspirin. As for the past one year, my count has been sitting at 550 - 660. Glad i am still coping fine... Seeing my haem soon in april for blood test

Best wishes to everyone!! xoxo

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I've been on HU now for 5 years and have had only a small side effect from it (occasionally a slightly sore tongue). I could not use baby aspirin due to also having an ulcerative colitis diagnosis (caused a flare-up). I was 55 when diagnosed with ET, and I'm still gardening and playing lots of soccer (don't want to stop after 40 years of playing).

Betsy US

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