Essential Thrombocytosis - Life Expectancy

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RE: Essential Thrombocytosis - Life Expectancy

by generic00 on Thu May 04, 2017 04:52 PM

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You asked if anyone can say that someone died from

Essential Thrombocythemia and I am here to say YES.

My 23 year old child died from Essential Thrombocythemia, that is what the coroner said.

We knew about the condition for over 6 years, but not one doctor prescribed a treatment.

RE: Essential Thrombocytosis - Life Expectancy

by mistyjade on Thu May 04, 2017 07:32 PM

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Dear Generic00, I'm sure I speak for the many people on this message board that we are all sorry for the loss of your adult child. It is a tragic truth: parents are not supposed to bury their children, and only another parent in your situation can fully understand your grief.  Please accept my condolences, and others online, not only for this untimely death, but that no doctor ever prescribed a treatment.

RE: Essential Thrombocytosis - Life Expectancy

by Tinkletops on Thu Sep 14, 2017 02:32 PM

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Hi there, I was diagnosed with ET 9 years ago after a routine blood test, I was 32 at the time. I had a bone marrow biopsy and I do not have the JAK2. My platelets started at about 760,000 and crept up to 1,600,000 over the following 2 years. I have been taking baby Aspirin ever since.

At first the haematologist said that I would need further treatment when my platelets reached 1,000,000 but when they did he said that because I was relatively young and healthy I could continue on the Aspirin. The platelet levels have plateaued at around 1,500,000.

I have no symptoms, thankfully. I keep my weight in check, drink at least 2 litres of water a day and don’t smoke. I probably drank too much alcohol in the past so I don’t drink very often now and certainly don’t let myself get dehydrated.

When I was first diagnosed I was really quite worried about everything and I couldn’t believe my body was letting me down. I read lots of comments on the internet back then and then one day I read a comment by a lady who said she had had the condition for 30 years and it never caused her any problems. So I decided I liked that story the best and that’s the one I focused on!

I know I’m lucky that I have no symptoms, I’ll continue to try and stay fit and look after myself and hope for the best.

Thanks for sharing your stories and good luck to you all.

RE: Essential Thrombocytosis - Life Expectancy

by mistyjade on Thu Sep 14, 2017 02:57 PM

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Dear Tinkletops (!!) ~ Thank you for sharing your encouraging story with all of us and your positive outlook. To all of the younger people with this disease on the message board, you are very inspiring. (And to us 'oldies,' too). Best of luck as you continue your journey with this odd disease.

RE: Essential Thrombocytosis - Life Expectancy

by JemimaJane on Mon Oct 09, 2017 08:33 PM

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This is exactly what I was hoping to read, your story is similar to mine. I’m 28 and 3 months ago I was diagnosed with ET. This year I’ve pretty much been in and out of hospital baffled the doctors had turns and numbnesss dizzy spells sickness you name it. But after a bone marrow bio I have been diagnosed with ET. To say it was a shock was an understatement. Apparently it’s very rare to have it at this age and usually people in their late 50/60’s are diagnosed with it. My levels are a check up last week are now at 790 and they’ve gone up 20 in 3 months. My next check up is in Feb and I hope to god I can try and get them down by then. I’ve read a lot of tips on diet, eating and drinking certain foods and yoga, so I’m gonna try my hardest to be a bit healthier. I have to take daily aspirin to stop the blood clots and he’s not currently concerned about my levels. If they get to 1000 then I will have to have some sort of chemo type treatment. Hopefully I can continue to live some sort of normal life I just have to be more aware

RE: Essential Thrombocytosis - Life Expectancy

by debrajo9 on Thu Dec 07, 2017 11:29 AM

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On Oct 09, 2017 8:33 PM JemimaJane wrote:

This is exactly what I was hoping to read, your story is similar to mine. I’m 28 and 3 months ago I was diagnosed with ET. This year I’ve pretty much been in and out of hospital baffled the doctors had turns and numbnesss dizzy spells sickness you name it. But after a bone marrow bio I have been diagnosed with ET. To say it was a shock was an understatement. Apparently it’s very rare to have it at this age and usually people in their late 50/60’s are diagnosed with it. My levels are a check up last week are now at 790 and they’ve gone up 20 in 3 months. My next check up is in Feb and I hope to god I can try and get them down by then. I’ve read a lot of tips on diet, eating and drinking certain foods and yoga, so I’m gonna try my hardest to be a bit healthier. I have to take daily aspirin to stop the blood clots and he’s not currently concerned about my levels. If they get to 1000 then I will have to have some sort of chemo type treatment. Hopefully I can continue to live some sort of normal life I just have to be more aware

Has anyone went on disability from this? I take 1000 my hyroxyirea ( chemo) daily and suffer bad with splenomegaly. 

Thank you

RE: Essential Thrombocytosis - Life Expectancy

by debrajo9 on Thu Dec 07, 2017 10:08 PM

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I feel tired all the time. I can sleep for days. Headaches,  my left side hurts all the time.. I go to Dr tomorrow. IDK what to do about work. It's impossible to work 12 to 13 hour shifts..

RE: Essential Thrombocytosis - Life Expectancy

by mistyjade on Fri Dec 08, 2017 01:08 AM

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Dear JJ...Sorry for the late reply to your message back in October, but I've had enough trouble with my laptop that I purchased a replacement one today. Two items that you can add to your diet, which help a lot, are drinking POM brand juice and take turmeric capsules.  I've tried a lot of 'red' juices and juice blends, but since my local Aldis now carries POM brand pomegranate juice for $2.89 a bottle, that's all I drink. For the first time in 16 1/2 years, my hematologist urged me to drink a lot of red juice...so maybe it's a 'new thing' that it was discovered to help reduce platelet counts. Anyway, faithfully adding some POM juice to take my hydroxyurea capsules and turmeric capsules at night lowered my platelet count by over 125-150,000 in 6 weeks. They dropped from the 700,000 'range' to the 550,000 'range'. Woohoo! Hope that helps.

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