Thrombocythemia

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RE: hi

by Ildegonda on Fri Apr 25, 2008 12:00 AM

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Hi All!

I haven't been here for  a while.

In some of my messages I wrote that we are planning a baby.

I was pregnat,but unfortunately in  the 8.th. week i had a missed abortion.

It is possible that it was becouse of the ET.

 

I was on Interferon Alpha for 4 months and it was terrible....

 

Please someone who had pregnancy with et. write me some words about it!

 

thanks!:)

 

ildi 

 

 

RE: Hydrea

by missygirl11 on Mon May 05, 2008 12:00 AM

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Hello,

My name is Michelle and I am new to the board. I too have ET. I was diagnoised nearly 5 years ago. I am turning 45 this month. It is a very strange disease. Most of the time I am very tired, my mind has so much it thinks about "getting done", however most of it never gets done. I have been on Hydrea since the beginning. I HATE IT!!!! It makes me tired and left feeling pretty lousy most of the time.

I want to know more about the JK2 test you have had done. I have questioned my Dr. about this several times, but get no response.

 

please let me know the details??? What will the test show and where can iI have it done?

 Thank you

Michelle

RE: Hydrea

by Zeeshan on Mon May 05, 2008 12:00 AM

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Yes, I had my JAK2 done in June 2007. It confirms the diagnoses whether ET is there or CML. CML & ET are very similar in nature but treatment is altogether is different. You can get this test done from any lab. They will take your blood.

If it is negative than it will be confirmed ET.

I think if you are on Hydrea since last 5 years than you are confirmed ET, but get your JAK2 Mutation Gene Test done.

To avoid weakness of Hydrea, take as much water as you can so that you can excrete more & more.

I'm 27 years old & took around 3 years as I was diagnosed in December 1994.

If you are living in USA, you can also contact Mayo Clinic as they have more details about ET.

Take care & don't worry. ET just distrubs the quality of life, it doesn't reduce the age of a person.

Best regards,

Zeeshan

RE: Hydrea

by missygirl11 on Mon May 05, 2008 12:00 AM

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Thank you very much! You have been very helpful. I see my Dr. on Thursday.  I do know they checked to see if I had PRIMARY ET..when they ran my Bone Marrow, and I do , which means there is no secondary cause, ie: infection, underlying disease and so on.

I would know if they ran the JAK2, I have never heard him say they have ran that...is it now new in the U.S.A??

 

Michelle

RE: Hydrea

by Zeeshan on Wed May 07, 2008 12:00 AM

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Hi,

My pleasure!

JAK2 is not new to USA, it is there since last 2-3 years I believe. I live in Pakistan & had it done in May 2007 so I think it must be in USA since long.

 Take care,

 

RE: Hydrea

by Zeeshan on Sun Jun 29, 2008 12:00 AM

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Is any body knows who is dead because of ET?

RE: Thrombocythemia

by Philosopher_King on Fri Jul 25, 2008 12:00 AM

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Hi i was also diagnosed with that, my doctor calls it essential thrombocytosis. It seems no treatment seems to be working. After i  had the treatment he prescribed, my platelet count was even higher a month later.

Essential thrombocytosis in men

by Philosopher_King on Fri Jul 25, 2008 12:00 AM

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I am a 29yr old South African black male, I was diagnosed with Essential Thrombocytosis by a specialist physician when i was 24 in 2004 that was after i had been having symptoms i did not understand since i was 21. My current platelet level is 1641 instead of the normal range of 180-450 (almost ten times higher)It occured to me recently in my research about this condition that

1. It affect women

2. they are normally above the age of 35

3.and white

What i want to find out is, are there any africans affected with this, in particular young males of any age below 30? How serious is this? my doctor gave put me on 150mg of Asprin once a day to control any formation of clots. Is that safe?

Essential Thrombocytosis

by Philosopher_King on Fri Jul 25, 2008 12:00 AM

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On 6/29/2008 Zeeshan wrote:

Is any body knows who is dead because of ET?

that is my question? does anybody know somebody who died directly from ET, how old were they? Y is this condition on a cancer site? Is this really a cancer? Do i have cancer? Do not ge me wrong we have some of the most great doctors in South Africa, but since i was diagnosed i find it more and more surprising at the lack of knowledge about this condition in my country. So can anyone tell me, is this a cancer, what a the chances that ill pass it on to my son? Will i die from this? what are the lifestyle changes i have to take to extend my life if i am dying. Im a non smoker(have never smoked) and i do not drink alcohol (i think in my whole 29 years of life i drank alcohol only 4 times) thats once every 6 or 7 years.

I find this condition extremely frustrating

RE: Essential Thrombocytosis

by wizard on Wed Aug 20, 2008 12:00 AM

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I was diagnosed in May 08 with this.....I live in the US.. My doctor informed me that  this is very rare and that there is not a known cause as to how you get this... Also as long as it is treated and maintained you can live a long life.. This has been a very scary experience for me I was never really ill before and was having blood work done for a colonoscopy and it was detected then.... I have been taking hydrea , they have changed my dosages about 4 or 5 times to get it correct , I have had platlet fresis 2 times.... Finally it seems to be maintaing around 234 which it was at over 1.7.... I havent heard fronm anyone dying from this... There have been draw backs in my life , I used to be very active, now I can maybe  do 1/2 of what i used to be able to do < the hydrea makes me tired, I have been having anxiety issues due to this  but that is also treatable... Just make sure that you dont over do it  and when you feel tired rest...........
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