Newly diagnosed ET Jak 2

Hi!

At 49 I was diagnosed last month with ET Jak2 I had put my overwhelming tiredness down to the menopause. First.blood test since 2016 showed high platelets and after 6 months (lots of lost bloods etc) diagnosed and been to haematology. Telling others I have cancer but it’s  managed without invasive treatment and being able to take this all in - thinking of the longer term implications once over 60 is tricky when on the outside I look well. Just wondered how everyone manages this?

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. 

    I don’t have ET but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand the challenges of this journey well……. You will see from my profile that it took about 14 years before I had to have big gun treatments so it was hard to get my head round the fact that I had cancer and try to explain to others about this,

    Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

    Always around to help more or just to chat

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi , welcome to the MacMillan online community, sorry to see you here, I'd much rather have met you elsewhere. I hope you enjoy the whole friendly community, you're very welcome.

    I too have a blood cancer. It's MDS and within that umbrella, I have Refractory Anaemia. I was diagnosed in 2015 at the age of 57 and I was devastated as I didn't know if I would reach 60. I had some counselling because soon after the cancer diagnosis I was diagnosed with severe spinal stenosis, a condition in which my spine is crumbling and after 7 months I had to get a wheelchair because the pain was so bad when I tried to stand.

    I'm 64 now, I had to stop working before I was 58. I have been seeing a haematologist a few years before diagnosis because I also have a blood condition called haemachromatosis so I had the same haematologist for around 10 years until he moved to a different hospital.

    I have treatment every week in the form of an injection which encourages my bone marrow to produce more red blood cells. However lately my neutrophils have been very low and also recently I have had a drop in platelets. In short, my bone marrow is failing unfortunately, but slowly. 

    I have a large garden to look after although I can only do so much because of my back pain. I go to a MacMillan exercise class called Move More once a week on a Tuesday but I think it's only here in Northern Ireland.

    The age of 60 came and went without any real drama, my concerns around my bone marrow and the weekly injections just keep on coming. I hope you can manage to try to put your cancer in the background and try to enjoy life.

    Take care and stay safe TD123

    Tvman 

    Love life and family.
  • As I was typing my reply, I was given info that Mike, The Highlander, was online too. He beat me to the reply but I couldn't wish for a better person to reply before me!

    Tvman 

    Love life and family.
  • Hope you are doing ok my friend.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike, I'm fine at the moment, some ups and downs the last few months but on the whole I'm positive but concerned occasionally. I haven't heard anything to the contrary so I guess you're fine, at least I hope you are. Please let me know. 

    You take care Mike and stay safe.

    Tvman 

    Love life and family.
  • As you know it gets a lot to ‘get me’ in any way down……. but I did have a heart attack in April (Left over damage from my sr I d Stem Cell Transplant back in 2015) but a few stents later and I am back fighting fit Stuck out tongue winking eye

    We are presently down in sunny Surrey seeing our three South based granddaughters - sports day yesterday with our oldest winning the 200m

    Stay safe my friend.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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    Click to see how to add details to your profile

  • Aw Mike, so sorry to hear about your heart attack, it's a worrying time for you and the family. I know, I had a heart attack myself almost 11 years ago. To cut a long story short I was having pains under exertion and went to hospital for a dye test. After the 2nd test I was told there was a bed for me in the heart ward. In the early hours of the next morning I had a heart attack. Lucky I was in hospital because the main artery through the left hand side of my heart was almost totally blocked. It's the L.A.D.(left anterior descending) and it has the nickname of the Widowmaker. I had a stent fitted a while later. I was very lucky! Was that short? 

    Take care my friend and no doubt we'll be in touch soon.

    Tvman 

    Love life and family.