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Old 10-11-2012, 07:38 PM   #1
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meirocco HB User
Question CML questions

I was suprised to find this under cancer...is it still considered one? anyone out there that has lived a long life, normal life after being dianosed? I would like to talk to someone that has it and knows about it. my father was diagnosed today and said it wasnt cancer? many more questions to follow if anyone respondes.

 
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Old 10-11-2012, 10:42 PM   #2
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Re: CML questions

Meirocco - I was diagnosed with CML in 2009, and am glad you are trying to help your father. Chronic Myelogenous Leukemia (CML) is a blood cancer. In most cases today it can be treated with targeted drug therapy in pill form, but some patients are treated through a bone marrow or stem cell transplant. It is a serious health condition, but it is also rare. If your father's doctor has said it is not cancer then the doctor may not understand the disease well, and you may want to get him to a hematologist/oncologist with more experience in CML treatment. Left untreated, or not treated properly, CML is a terminal disease. Treated properly, in most cases today, patients can keep the disease under control and move forward with their life and die from something else.
Pat

Last edited by PhoenixPat; 10-11-2012 at 10:43 PM.

 
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Old 10-12-2012, 12:15 PM   #3
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Re: CML questions

thank you, here is what i know: it was a hematologist that did his blood work. here is how it finally got dianosed. i have had major health issues, i switched docs and this one asked me if she could do a neurrological gene test, i said sure. mine came back positive, for MTHFR and more. it is genetic, therefore he got tested (lost 4 people, 2 of them brothers by age 50, and 54 and the brothers where just last year). blood work came back fine on that end but screwed up on others. in the last year, he has broken a leg, ankle, been in a blast fire, diagnosed with lyme disease, then sent to the hema, because of his wbc and some other number that was2 and should have been 0 (they wont tell me the number)....they are going to test his blood every three months, and he is also on a pill for the rest of his life, it starts with an 's' ....he told me they said it was not cancer however, they dont divulge a lot to me because my condition and they think its better to not say all. that is why i am confused. i understand its 'the best one to have' if you are going to have it, (hoping his joints and pain will be under more control), but will he live a normal life? i thank God everytime i think about it that its not a death sentence but i still wonder if it is. and that is all i know, besides that one form of blood combined with another (philidelphia gene) is what i think it would be called, not sure. what does the medicine do?

 
Old 12-26-2012, 11:44 PM   #4
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Re: CML questions

Did u get an answer?

Quote:
Originally Posted by meirocco View Post
thank you, here is what i know: it was a hematologist that did his blood work. here is how it finally got dianosed. i have had major health issues, i switched docs and this one asked me if she could do a neurrological gene test, i said sure. mine came back positive, for MTHFR and more. it is genetic, therefore he got tested (lost 4 people, 2 of them brothers by age 50, and 54 and the brothers where just last year). blood work came back fine on that end but screwed up on others. in the last year, he has broken a leg, ankle, been in a blast fire, diagnosed with lyme disease, then sent to the hema, because of his wbc and some other number that was2 and should have been 0 (they wont tell me the number)....they are going to test his blood every three months, and he is also on a pill for the rest of his life, it starts with an 's' ....he told me they said it was not cancer however, they dont divulge a lot to me because my condition and they think its better to not say all. that is why i am confused. i understand its 'the best one to have' if you are going to have it, (hoping his joints and pain will be under more control), but will he live a normal life? i thank God everytime i think about it that its not a death sentence but i still wonder if it is. and that is all i know, besides that one form of blood combined with another (philidelphia gene) is what i think it would be called, not sure. what does the medicine do?

 
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