thank you Tracey

[Guest guest]

Wow ! Teacey thank you for all the info. I have made notes for my

doc ( I will see him next tusday ), you gave me alot of good

questions that i had not thought of before, and I will not let the

doc just push me off this time.

i guess the only thing i can respond to right now is the rash

thingie, Its really just not a big deal,, it dosent hurt or itch, it

just feels like elephant skin, and is not a big deal to me really,

but its there and I wanted to address it.

I dont feel like I am getting the best treatment. I say this

because I no longer get regular blood test anymore,, I have not had

a CBC for 6 months, im not comfortable with that i think i should be

monitored more often. i have 2 doctors one is my primary and the

other is my leukemia doc. i cant seem to get either one of them to

address my side effects from the gleevec, ie. I complain about my

bone pain and I was told that i have burcidous in my sholders even

though my done pain is not only in my sholders. AND I had a

tremedous pain in my chest one day ,, I went to my primary doc and I

was told that my chest pain was because my back is out of

addjustment... grrr. I felt like i was just brushed off.

well Skittles (my wife) and I will be alittle more forceful on this

next visit to the doc, and we WILL have these concerns addressed.

thanks for the being there for me.

hang tough, ttfn,

P.S. Im not good at spelling, please forgive me for that. { It must

be from the gleevec, teeheee )

[Guest guest]

Hi ,

I'm glad you found my post helpful in some way.

I'm a little concerned that you haven't had a CBC in 6 months and I

think you're right to be concerned too. I wouldn't be comfortable

with anything less than at least every 6 weeks, if you're completely

stable.

Just to show you how fast things can change, I've been on Gleevec

for 3 years and was stable for all that time. Out of the blue, for

no good reason, my counts started to crash. I never had a problem

in all the three years until now.

Of course, my intention isn't to scare you but let you know that you

deserve better and don't settle for a doctor that you aren't happy

with who isn't addressing your issues. Many of us have changed

doctors because we weren't satisfied with the ones we had.

Gleevec does cause bone and joint pain and that may be what's

happening to you. Your chest pain could be anything and should be

investigated. Chest pain is not something to brush off. It's great

that you have Skittles there to help you advocate. Give her my best

regards and keep posting!

Tracey

PS my spelling is probably worse then my kids spelling so no need to

apologize

[Guest guest]

Correction - I fired his oncologist today (okay - maybe I enjoyed

doing it a little too much) so he doesn't have an appointment on

Tuesday. called the doctor to suggest getting blood work done

before his Tuesday appointment so that we had current information to

discuss and they told him that if the doctor wanted blood work - he

would order it on Tuesday. Which means we wouldn't be able to

discuss it for 6 more months! Apparently he wanted to discuss the

bloodwork he had done 6 months ago! After I fired Dr. Madrag as I

call him, I called our GP and she is setting it up so we can go to

the local Cancer Center in town - and if that doesn't give us a warm

fuzzy - we are off to Portland. Just because we live in a small

town - it doesn't mean we need to stick with small health care.

PS - I am baddog's (, skiwat - however you all know him - lol)

wife - lol - been a member to the different cml groups for about 4.5

years under this ID and oranthis - but am a quiet member who doesn't

get the chance to even read all the posts. Too much stuff to sift

through to find the good stuff. I read everything in here and it is

all informative - and very much appreciated!

Nice to know we have many friends out there!

>

> Wow ! Teacey thank you for all the info. I have made notes for my

> doc ( I will see him next tusday ), you gave me alot of good

> questions that i had not thought of before, and I will not let the

> doc just push me off this time.

> i guess the only thing i can respond to right now is the rash

> thingie, Its really just not a big deal,, it dosent hurt or itch,

it

> just feels like elephant skin, and is not a big deal to me really,

> but its there and I wanted to address it.

> I dont feel like I am getting the best treatment. I say this

> because I no longer get regular blood test anymore,, I have not had

> a CBC for 6 months, im not comfortable with that i think i should

be

> monitored more often. i have 2 doctors one is my primary and the

> other is my leukemia doc. i cant seem to get either one of them to

> address my side effects from the gleevec, ie. I complain about my

> bone pain and I was told that i have burcidous in my sholders even

> though my done pain is not only in my sholders. AND I had a

> tremedous pain in my chest one day ,, I went to my primary doc and

I

> was told that my chest pain was because my back is out of

> addjustment... grrr. I felt like i was just brushed off.

> well Skittles (my wife) and I will be alittle more forceful on

this

> next visit to the doc, and we WILL have these concerns addressed.

>

> thanks for the being there for me.

>

> hang tough, ttfn,

>

> P.S. Im not good at spelling, please forgive me for that. { It must

> be from the gleevec, teeheee )

[Guest guest]

Wow Skittles, way to go! Good for you!

You and deserve the best care you can get and I find it

shocking that this doctor treated you this way. It's appauling.

You definately have friends here and I'm so happy you've taken the

time to post and share your story. We all gain by hearing each

other's stories.

Looking forward to hearing more from you,

Tracey