Re: Re: Postings from around the world - dyana

[Guest guest]

I am from Pocatello Idaho. I am just a lurker, but my 28 year old daughter is a

cancer survivor

(liposarcoma in thigh) for 3 years and I have 2 close friends with Leukemia so

I joined this group for new info. thanks To all, Dyana

dyana

---------------------------------

Everyone is raving about the all-new beta.

[Guest guest]

I am from Warren, OH...1 hour southeast of Cleveland.

Pam

dyana lindsay <dyana123_2000@...> wrote:

I am from Pocatello Idaho. I am just a lurker, but my 28 year old

daughter is a cancer survivor

(liposarcoma in thigh) for 3 years and I have 2 close friends with Leukemia so I

joined this group for new info. thanks To all, Dyana

dyana

---------------------------------

Everyone is raving about the all-new beta.

[Guest guest]

I'm from the Cherokee Nation, located in what is now 16 counties of northeastern

Oklahoma. I work as the Development Director fpr my tribe. See www.cherokee.org

for more information about CHeroees.

I was diagnosed 10-1-06 and was on 600 mg Gleevec until mid Dec when my wbc

was down to 8,000. So went on 400 mg but last week found that my wbc is back up

to 18,000 so I'm on 600 mg again. Will have a BMT in April to see what's really

going on. The side effects have been numerous and sometimes difficult, blurry

vision is the problem which may drive me to retirement as soon as I can find an

insurance for Part D Medicare that'll pay for gleevec? Any suggestions?

I enjoy the information from the group. It's been very helpful to me however

you can see from my recent post I am tiring of the " bickering " as I have to work

hard to keep positive about facing this diseaase.

Margaret

Margaret ,

mpraymond@...

margaret-raymond@...

[Guest guest]

At 11:30 AM 2/12/07 -0800, you wrote:

>I was diagnosed 10-1-06 and was on 600 mg Gleevec until mid Dec when my

>wbc was down to 8,000. So went on 400 mg but last week found that my wbc

>is back up to 18,000 so I'm on 600 mg again. Will have a BMT in April to

>see what's really going on. The side effects have been numerous and

>sometimes difficult, blurry vision is the problem which may drive me to

>retirement as soon as I can find an insurance for Part D Medicare that'll

>pay for gleevec? Any suggestions?

Hi Margaret,

A couple things about your post concern me.........there was no reason to

drop your dose because you white count dropped to 8,000..............or

maybe you were saying because you got a normal white count and the side

effects were bad, that is why you dropped the dose (with MD approval of

course).

Early in treatment it is even considered desirable to see the white count

drop down to 3 or 4 (1000 that is). It looks like the 400mg dose was not

controlling your disease?

I know this is just a typo.....but you will have a bmb (not a BMT) in

April. Easy to mix all the letter of this disease up. The blurry vision is

usually from excess tear formation in the eyes.....my eye specialist told

me to use Visine AC (a decongestant) every day. Also, almost all of the

Medicare Part D insurance companies will cover Gleevec. Did you look at

AARP or Humana Part D. Go to the Medicare site and plug in the drug and it

will come up with all the drug companies that cover Gleevec. It will not be

cheap with the donut hole.........might cost about $6K a year, but you

could also qualify for extra assistance. I would look on the Medicare site

and then call and speak with a Medicare person.

C.