Re: doctor appt results...

[Guest guest]

Hang in there Cheryl

I think you are doing all the right things and heading in the right

direction. Seeing Dr. Lipton will clarify a lot of things for you

Sharon T

_____

From: [mailto: ] On Behalf Of

thornton_cheryl

Sent: Tuesday, January 05, 2010 3:52 PM

Subject: [ ] doctor appt results...

Just want to say thanks for the warm welcome here...I have today seen my

Onc. and just wanted to post an update since you have all been so kind...

First off with the good news...I had a .94 Log reduction in just 4 weeks on

the Gleevec...

I spoke to her about being sent to a specialist and she is referring me to

Dr. Lipton in Toronto...she said I should be there with a month or so until

then just to keep going that way we've been going...once a week bloodwork...

there had been some questions here as to why I was on 800 mg of Gleevec if

only in accelerated stage so I asked that question too...this is the answer

I got - " your case is not presenting normally - in your original cbc your

wbc was 39 and your blasts were 1% - when the BMB was done the peripheral

blood presented in accelerated at 14% however the marrow presented in blast

crisis... "

she was very encouraged with my results so far and that was good to hear -

however - I'm a little disenheartened to hear the words blast crisis...

Cheryl

[Guest guest]

Hi Cheryl: Glad you got to see the Oncologist, and that you will be seeing Dr.

Lipton for follow-up. I agree with Judy's advice regarding a BMT. Its not

always the way to go. The Gleevec is doing something for you, and you may be

told to just give it a chance.

I mentioned in my first message to you that they were pushing me for a BMT,

until the one doctor absolutely told me no at that point.

I hope you find encouragement from all the people who have had CML, and some

either have not reached remission or it took many years to get there. Keep us

posted, and we will help you any way we can.

A.

>

> Just want to say thanks for the warm welcome here...I have today seen my Onc.

and just wanted to post an update since you have all been so kind...

>

> First off with the good news...I had a .94 Log reduction in just 4 weeks on

the Gleevec...

>

> I spoke to her about being sent to a specialist and she is referring me to Dr.

Lipton in Toronto...she said I should be there with a month or so until then

just to keep going that way we've been going...once a week bloodwork...

>

> there had been some questions here as to why I was on 800 mg of Gleevec if

only in accelerated stage so I asked that question too...this is the answer I

got - " your case is not presenting normally - in your original cbc your wbc was

39 and your blasts were 1% - when the BMB was done the peripheral blood

presented in accelerated at 14% however the marrow presented in blast crisis... "

>

> she was very encouraged with my results so far and that was good to hear -

however - I'm a little disenheartened to hear the words blast crisis...

>

> Cheryl

>

[Guest guest]

Hi Cheryl,

I too was in the blast crisis stage at diagnosis in April 2007. Was not given

much hope without a Bone Marrow Transplant. I refused the transplant.

In July of this year there were no active CML cells. Hang in there the medicines

sometimes take a little longer.

Anita

________________________________

From: thornton_cheryl <thornton_cheryl@...>

Sent: Tue, January 5, 2010 5:51:37 PM

Subject: [ ] doctor appt results...

Just want to say thanks for the warm welcome here...I have today seen my Onc.

and just wanted to post an update since you have all been so kind...

First off with the good news...I had a .94 Log reduction in just 4 weeks on the

Gleevec...

I spoke to her about being sent to a specialist and she is referring me to Dr.

Lipton in Toronto...she said I should be there with a month or so until then

just to keep going that way we've been going...once a week bloodwork...

there had been some questions here as to why I was on 800 mg of Gleevec if only

in accelerated stage so I asked that question too...this is the answer I got -

" your case is not presenting normally - in your original cbc your wbc was 39 and

your blasts were 1% - when the BMB was done the peripheral blood presented in

accelerated at 14% however the marrow presented in blast crisis... "

she was very encouraged with my results so far and that was good to hear -

however - I'm a little disenheartened to hear the words blast crisis...

Cheryl

[Guest guest]

Anita - thank you for posting...it seems that most of the people I come across

are in chronic stage...they have told me that most likely I wouldn't have much

more than 18 months without a transplant...you don't know how happy you have

just made me...

Cheryl

>

> Hi Cheryl,

> I too was in the blast crisis stage at diagnosis in April 2007. Was not given

much hope without a Bone Marrow Transplant. I refused the transplant.

> In July of this year there were no active CML cells. Hang in there the

medicines sometimes take a little longer.

> Anita

>

>

>

>

> ________________________________

> From: thornton_cheryl <thornton_cheryl@...>

>

> Sent: Tue, January 5, 2010 5:51:37 PM

> Subject: [ ] doctor appt results...

>

>

> Just want to say thanks for the warm welcome here...I have today seen my Onc.

and just wanted to post an update since you have all been so kind...

>

> First off with the good news...I had a .94 Log reduction in just 4 weeks on

the Gleevec...

>

> I spoke to her about being sent to a specialist and she is referring me to Dr.

Lipton in Toronto...she said I should be there with a month or so until then

just to keep going that way we've been going...once a week bloodwork...

>

> there had been some questions here as to why I was on 800 mg of Gleevec if

only in accelerated stage so I asked that question too...this is the answer I

got - " your case is not presenting normally - in your original cbc your wbc was

39 and your blasts were 1% - when the BMB was done the peripheral blood

presented in accelerated at 14% however the marrow presented in blast crisis... "

>

> she was very encouraged with my results so far and that was good to hear -

however - I'm a little disenheartened to hear the words blast crisis...

>

> Cheryl

>

>

>

>

>

>

>

>

[Guest guest]

I was given 6 months my reply is you do not know my God.

Like Lottie and everyone will tell you be your own advocate.

Do lots of research ask your questions here and you will find answers and get to

a specialist.

I learned from reading the post on here.

Never give up

Anita

________________________________

From: thornton_cheryl <thornton_cheryl@...>

Sent: Tue, January 5, 2010 8:56:20 PM

Subject: Re: [ ] doctor appt results...

Anita - thank you for posting...it seems that most of the people I come across

are in chronic stage...they have told me that most likely I wouldn't have much

more than 18 months without a transplant.. .you don't know how happy you have

just made me...

Cheryl

>

> Hi Cheryl,

> I too was in the blast crisis stage at diagnosis in April 2007. Was not given

much hope without a Bone Marrow Transplant. I refused the transplant.

> In July of this year there were no active CML cells. Hang in there the

medicines sometimes take a little longer.

> Anita

>

>

>

>

> ____________ _________ _________ __

> From: thornton_cheryl <thornton_cheryl@ ...>

> groups (DOT) com

> Sent: Tue, January 5, 2010 5:51:37 PM

> Subject: [ ] doctor appt results...

>

>

> Just want to say thanks for the warm welcome here...I have today seen my Onc.

and just wanted to post an update since you have all been so kind...

>

> First off with the good news...I had a .94 Log reduction in just 4 weeks on

the Gleevec...

>

> I spoke to her about being sent to a specialist and she is referring me to Dr.

Lipton in Toronto...she said I should be there with a month or so until then

just to keep going that way we've been going...once a week bloodwork...

>

> there had been some questions here as to why I was on 800 mg of Gleevec if

only in accelerated stage so I asked that question too...this is the answer I

got - " your case is not presenting normally - in your original cbc your wbc was

39 and your blasts were 1% - when the BMB was done the peripheral blood

presented in accelerated at 14% however the marrow presented in blast crisis... "

>

> she was very encouraged with my results so far and that was good to hear -

however - I'm a little disenheartened to hear the words blast crisis...

>

> Cheryl

>

>

>

>

>

>

>

>

[Guest guest]

DON'T EVER GIVE UP IS SO RIGHT.  MY DOCTOR NEVER TOLD ME ABOUT DR. DRUKER AND

HIS TRIAL.  MY FIVE YEARS WERE UP, MY COUNTS WERE STARTING TO SOAR, AND SHE

JUST HAD A REAL FINAL ATTITUDE.  I JUST LUCKILY SAW DR. DRUKER ON TV ONE NIGHT,

TOLD HER ABOUT HIM  AND THEN SHE WROTE HIM A LETTER ABOUT ME, AND I GOT INTO

HIS TRIAL FOR GLEEVEC.  BUT, LEFT TO MY DR. HERE, I WOULD HAVE BEEN PUSHING UP

DAISIES 10 YEARS AGO!!! 

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

o2/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

#840 Zavie's Zero Club

From: anita <awristen1@...>

Subject: Re: [ ] doctor appt results...

Date: Tuesday, January 5, 2010, 10:17 PM

 

I was given 6 months my reply is you do not know my God.

Like Lottie and everyone will tell you be your own advocate.

Do lots of research ask your questions here and you will find answers and get to

a specialist.

I learned from reading the post on here.

Never give up

Anita

____________ _________ _________ __

From: thornton_cheryl <thornton_cheryl@ .ca>

groups (DOT) com

Sent: Tue, January 5, 2010 8:56:20 PM

Subject: Re: [ ] doctor appt results...

Anita - thank you for posting...it seems that most of the people I come across

are in chronic stage...they have told me that most likely I wouldn't have much

more than 18 months without a transplant.. .you don't know how happy you have

just made me...

Cheryl

>

> Hi Cheryl,

> I too was in the blast crisis stage at diagnosis in April 2007. Was not given

much hope without a Bone Marrow Transplant. I refused the transplant.

> In July of this year there were no active CML cells. Hang in there the

medicines sometimes take a little longer.

> Anita

>

>

>

>

> ____________ _________ _________ __

> From: thornton_cheryl <thornton_cheryl@ ...>

> groups (DOT) com

> Sent: Tue, January 5, 2010 5:51:37 PM

> Subject: [ ] doctor appt results...

>

>

> Just want to say thanks for the warm welcome here...I have today seen my Onc.

and just wanted to post an update since you have all been so kind...

>

> First off with the good news...I had a .94 Log reduction in just 4 weeks on

the Gleevec...

>

> I spoke to her about being sent to a specialist and she is referring me to Dr.

Lipton in Toronto...she said I should be there with a month or so until then

just to keep going that way we've been going...once a week bloodwork...

>

> there had been some questions here as to why I was on 800 mg of Gleevec if

only in accelerated stage so I asked that question too...this is the answer I

got - " your case is not presenting normally - in your original cbc your wbc was

39 and your blasts were 1% - when the BMB was done the peripheral blood

presented in accelerated at 14% however the marrow presented in blast crisis... "

>

> she was very encouraged with my results so far and that was good to hear -

however - I'm a little disenheartened to hear the words blast crisis...

>

> Cheryl

>

>

>

>

>

>

>

>