Re: new to group looking for answer about cml pain

October 7, 2009

thank you! I am in the reno sparks NV. area. I was diagnosed in Sept of " 04 " I

was also on sprycel 50mg. 2 x's a day. I havent been able to be on it for two

months because my last pperscription the insurance refused to pay for because it

was $9,869 they have always cost that much but they used to always pay for it.

Now i dont have any doctors. I am so sorry to be such a whiner latly Ive been

just really depressed between detoxing off of Fyntnal patches, the

lollie,methadone lexapro, and zofran and its been a really long year i got a

staph infection that covered my entire face last year and my spleen removed and

i guess i havent really felt well since.At home my family becomes " unstable " I

guess you can call it so I just always try to just fake that Im fine and over

the year its just started to wear on me. Most generally Im a pretty happy person

that really doesnt think much about being sick because im 33 i have alot to live

for. I dont want to spend my time being sick but when without quality who wants

quanity. I would really like to know if you know of any good doctors in my area

that may be familliar with cml and once again sorry for being so depressed and

thank you for replying.

>

> If you are feeling alone this is the best place to come to. We are all in the

same boat but just at different spots in our journey. It sounds like you have

had more than your share of medical issues. Some of us experience bone pain,

spleen pain, weight gain, dizziness you name it someone has had it. The worst

feeling is that you are alone in this. It must be very frustrating to have been

to so many doctors and not get help. What area do you live in I am sure you

could be directed towards a caring knowledgable doctor. The problem is not alot

of doctors are versed in CML. There are miracle drugs out there, if Gleevec

doesn't work there are now others that work just at well if not better. Gleevec

is the first line of defense but many of us, myself included could not tolerate

it. This group shouldn't give medical advice that only a physician can to but

we can tell our experience and let you know that you are not alone. God Bless

you.

> Carolyn_Kuptz2000@...

> dx 11-05

> CML has been undetecable on

> Sprycel 20 mg bid

>

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