new to group looking for information about pain related with CML

[Guest guest]

Hi im new to the group I am 33 and was diagnosed five years ago. I was

not tolerent to Gleevic and was placed on hospice for some time because

my WBC at the time my was 279.000 I was at 6% blast and my pain was out

of control and was care flighted to UC do to personal reasons I

went off hospice at that time. I started Sprycel and Hydroxia at that

time and somewhat stabalized with a WBC never being below 9,800 for the

last year. I have been treated for cronic pain with several norcotics

for a few years now. I had to be a self pay because medicare nor my

privite insurance would pay for the treatments only the the

perscriptions. well I got behind in my bill and my doctor dropped me by

letter. Because of the lack of knowledge of my disease and i havent been

real great about not aggressivlly tring to find out more about my

disease, symptoms and treatment I am not real ok with just dying or

living without quality of life. To some doctors call me a dificult

patient well I have a 13 and 14 so im on a mad fight. to cut to the

chase not only have am i having withdraws from the meds my pain is

clearly out of controlled. no one understands why my pain is so bad am i

the only one that has pain like this i feel really alone here that has

pain like this or maybe its all in my head. I have had my spleen removed

I had invasive cervical cancer followed by a hystorectomy when I was 25

I am not looking to find medical advice Im only tring to find someone

that i can talk to that might relate in someway, so i dont feel so crazy

alone its been a very long five years. [(] sorry for all the info

thanks for reading