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Et Cure?

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Subject: ET CURE?
Date: 03/28/2008
Hello!  This is my second posting but no responses concerning my first discouraged me from sharing some very good news.  My initial posting back in May 2007 requested any info on ET plus breast cancer diagnosis.  Well I am thrilled to say that since finishing my last chemo treatment for breast cancer Sept. 26, 2007 my ET is still nonexistent!  My platelet count is staying at 340 (previously >1 million untreated and ~ 400-500 w/anagrelide) and my oncologist says that by the way the machine is reading, the shape and size seem to be completely normal.  I asked how long I have to go before saying I'm cured and he doesn't know (none of the other 9 oncologists in the office have ever had a patient with both ET and BC either).  Although I had some stomach "issues" throughout chemo (along with being bald of course) now that it's over I am very thankful for the wonderful "side effect"!  I'm curious if anyone else has experienced this.  I surely hope so!  (I'm on tamoxifen now so I guess it's always possible that it is keeping the platelets in line.)
Subject: RE: ET CURE?
Date: 06/24/2008

Hi how are you? It great news the your ET has gone back to normal... How long have you had it and what symptoms did you have?

I have had ET for 15 years and other than an enlarged spleen I am pretty assymptomatic.

My count at the moment is 710 but has gone as high as 1 million forcing me to take hydrea for months. After changing doctors he stopped me from taking hydrea due to the risk of developing leukemia.

I was on asprin for a few years but I have been taken off that too due to increased chance of internal bleeding.

I have been told there is no cure and sometimes the treatment can be worse than the disease.

You say you took anegrelade... How was that and how long did you take it for? Did you find it helped?

Any information you can give me would be great as I don't know anyone else who has this and have been told it is very rare.

It must have been hard to go through breast cancer as well... Good luck and if you can recommend any websites that you found useful please let me know.

PS - I'm from Australia, where are you from?

On 3/28/2008 Et01bc07 wrote:

Hello!  This is my second posting but no responses concerning my first discouraged me from sharing some very good news.  My initial posting back in May 2007 requested any info on ET plus breast cancer diagnosis.  Well I am thrilled to say that since finishing my last chemo treatment for breast cancer Sept. 26, 2007 my ET is still nonexistent!  My platelet count is staying at 340 (previously >1 million untreated and ~ 400-500 w/anagrelide) and my oncologist says that by the way the machine is reading, the shape and size seem to be completely normal.  I asked how long I have to go before saying I'm cured and he doesn't know (none of the other 9 oncologists in the office have ever had a patient with both ET and BC either).  Although I had some stomach "issues" throughout chemo (along with being bald of course) now that it's over I am very thankful for the wonderful "side effect"!  I'm curious if anyone else has experienced this.  I surely hope so!  (I'm on tamoxifen now so I guess it's always possible that it is keeping the platelets in line.)

 

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