Et

I was sent this website from my mother as I was just recently tested for Lukemia and ET. My Dr. said it is more than likely ET. I see I am not the lone ranger here but I don't really understand as everyone is speaking of this ET as a cancer? It was not explained to me as a cancer just a Platelette issue as mine is making 900 something and I was told it is to high should be between 1-200. So I am asking for someone to explain this to me so that I may have a better understanding as it seems by the looks of all the comments that maybe my Dr. is not telling me what all I need to know. We are waiting for my blood results to come back from the City of Hope. I am currently on Hydroxyurea 1000 mg daily and baby asipirin.

I will be waiting for a response from anyone, someone. Now I feel like I should be worrying.

 

Sorry you feel so "up in the air".  That is an issue with ET (I was diagnosed in 2000).  The doctors don't know what to do with us!  Yes, the platelets are over-producing (normal is 300 - 400 million) in an ET patient.  Everyone is DIFFERENT though and YOU know your body better than any doctor and YOU must read up and educate yourself.  Is ET "cancer"?  I think it is technically because it involved the proliferation of cells, HOWEVER  - these cells are NOT cancer cells, the mechanism that "turns off" the production is broken.  So, there are too many, but they are not "cancerous" as in a foreign cell invading your body.  It's also incurable and chronic (yeah, not to be a pessimist).  We have to learn how to deal with it physically and emotionally day by day. It's important to learn about what you have but not to allow it to consume your life!  Life is already too short to be obsessed with an illness.  Hope this helps a tiny bit!

 

On 4/22/2008 wisgal wrote:

Sorry you feel so "up in the air".  That is an issue with ET (I was diagnosed in 2000).  The doctors don't know what to do with us!  Yes, the platelets are over-producing (normal is 300 - 400 million) in an ET patient.  Everyone is DIFFERENT though and YOU know your body better than any doctor and YOU must read up and educate yourself.  Is ET "cancer"?  I think it is technically because it involved the proliferation of cells, HOWEVER  - these cells are NOT cancer cells, the mechanism that "turns off" the production is broken.  So, there are too many, but they are not "cancerous" as in a foreign cell invading your body.  It's also incurable and chronic (yeah, not to be a pessimist).  We have to learn how to deal with it physically and emotionally day by day. It's important to learn about what you have but not to allow it to consume your life!  Life is already too short to be obsessed with an illness.  Hope this helps a tiny bit!

Well I certainly will not let this consume my life as it really doesn't so far other than going to the Dr. constantly to get my blood count taken. I had a Blood clot in my lung last year so needless to say I am tired of being poked at. Now my Dr. has me taking 2 tablets 2x day of Hydroxyurea. How does anyone feel about this drug. Also if this is NOT a cancer then why am I seeing a Oncology Dr. Why is this ET always coming up in the cancer sections of everything you read. I am aware that I will have this until the day I die which won't be for a long time I'm sure and can be controlled by this drug. I have read alot of articles and they all say the same thing. So recently on a visit to my Dr. I asked him "is this a form of cancer?" His response was just tell everyone you have ET. What kind of response is that. Why not tell the entire truth. It is not going to change one thing other than you knowledge. I would just like some answers. How everyone else feels about all this. I don't feel any different and if I am eventually to feel different then how is that supposed to be. Obviously I have had this thing for quite some time and still feel no different. I would like more information if anyone out there has any. Thank you for all the responses and you are all a great help to me.