Re: REMISSION question about all this jeanny

[Guest guest]

Normally, you have to continue with the medication,

however your body adapts and the side effects lessen.

I am so sorry that this has happened to you daughter

and please know that she will be able to live a long

life and quite possibly there may be a cure in her

life time.

Matt

Florida

In a message dated 1/17/2009 12:35:05 P.M. Eastern Standard Time,

jeanny-f@... writes:

I have a question, my daughter who is 20 have cml leukemia and she doesent

want to ask any question , she is in her own little world of denial,, sorry I

don't type good in anglish, im french,, lol, but I try my best ,

wen you go in remission, do you stop the pills or do you still have to take

some for the rest of your life, how long can you be in remission ,

my daughter natasha have been taking sprycel for the last year , because

gleevex did not work out to good with her, and she have lots of headack and the

flu all the time , is that normal and she is still in pain, back and leg

From: Eva

Sent: Friday, January 16, 2009 4:45 PM

_@..._ (mailto: )

Subject: Re: [ ] REMISSION AT LAST

Congrats on your remission.

Eva

From: jackie schneider

Sent: Thursday, January 15, 2009 11:04 PM

_@..._ (mailto: )

Subject: Re: [ ] REMISSION AT LAST

Congratulations n!! for joining the zero club. I'm so happy for you. I

live in Iowa which means we usually send our bad weather your direction.

Unfortunately, you are in for some very, very, cold weather in the near future.

We had record lows of -50 degrees today. Unbearable to be outside for brief

moments.

I have a very good friend from Maine. She lives way up by the Canadian

border. Beautiful country. She says the fall is the best time of year and when

they go to Houston TX for her appts, they can't hardly stand the heat. What

part

of Maine do you live?

Stay warm!!

God Bless, Jackie S.

dx 4/14/04

currently in HHT trial at MDACC

From: sopranograndma <_sopranograndma@sopranogr_

(mailto:sopranograndma@...) >

Subject: [ ] REMISSION AT LAST

_@..._ (mailto: )

Date: Thursday, January 15, 2009, 9:48 PM

Hi fellow cmlers, I found out today that i,ve been in remission for

quite a while and noone told me. I have had a change of oncologists 3

times in my 8 years with cml. this last doctor I,ve only had for a few

months [i like her very very much ] shes really on the ball.I am on

sprycel have been for 2 years now, before that on hydroxiurea for 5

years and 1 year on and off gleevic [ which damaged my liver ] ended up

on 100 ml a day which someone on here told me was doing no good, oh yes

I was on injections of interferon for 2 and a half weeks before the

gleevic that almost killed me.So Zavie, can I now be in the zero club?

I,m really very HAPPY to know I,m finally in remission, thanks for all

the support everyone gives us on here, n from Maine and it,s 8

below zero right now brrr

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

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cemailfooterNO62)

[Guest guest]

I have a question, my daughter who is 20 have cml leukemia and she doesent want

to ask any question , she is in her own little world of denial,, sorry I don't

type good in anglish, im french,, lol, but I try my best ,

wen you go in remission, do you stop the pills or do you still have to take some

for the rest of your life, how long can you be in remission ,

my daughter natasha have been taking sprycel for the last year , because gleevex

did not work out to good with her, and she have lots of headack and the flu all

the time , is that normal and she is still in pain, back and leg

From: Eva

Sent: Friday, January 16, 2009 4:45 PM

Subject: Re: [ ] REMISSION AT LAST

Congrats on your remission.

Eva

From: jackie schneider

Sent: Thursday, January 15, 2009 11:04 PM

Subject: Re: [ ] REMISSION AT LAST

Congratulations n!! for joining the zero club. I'm so happy for you. I live

in Iowa which means we usually send our bad weather your direction.

Unfortunately, you are in for some very, very, cold weather in the near future.

We had record lows of -50 degrees today. Unbearable to be outside for brief

moments.

I have a very good friend from Maine. She lives way up by the Canadian border.

Beautiful country. She says the fall is the best time of year and when they go

to Houston TX for her appts, they can't hardly stand the heat. What part of

Maine do you live?

Stay warm!!

God Bless, Jackie S.

dx 4/14/04

currently in HHT trial at MDACC

From: sopranograndma <sopranograndma@...>

Subject: [ ] REMISSION AT LAST

Date: Thursday, January 15, 2009, 9:48 PM

Hi fellow cmlers, I found out today that i,ve been in remission for

quite a while and noone told me. I have had a change of oncologists 3

times in my 8 years with cml. this last doctor I,ve only had for a few

months [i like her very very much ] shes really on the ball.I am on

sprycel have been for 2 years now, before that on hydroxiurea for 5

years and 1 year on and off gleevic [ which damaged my liver ] ended up

on 100 ml a day which someone on here told me was doing no good, oh yes

I was on injections of interferon for 2 and a half weeks before the

gleevic that almost killed me.So Zavie, can I now be in the zero club?

I,m really very HAPPY to know I,m finally in remission, thanks for all

the support everyone gives us on here, n from Maine and it,s 8

below zero right now brrr

[Guest guest]

she better have a long life, god have given us a second chance on life and we

have taken it, I coudent breath for the past year and a half, but im getting a

bit better, if something happen to her I will die to , and thanks for the

answer, but why after more then a year of sprycel , she still have bad bone

pain and muscle pain and lots of headack and diareha

From: mtmaynor@...

Sent: Saturday, January 17, 2009 3:46 PM

Subject: Re: [ ] REMISSION question about all this jeanny

Normally, you have to continue with the medication,

however your body adapts and the side effects lessen.

I am so sorry that this has happened to you daughter

and please know that she will be able to live a long

life and quite possibly there may be a cure in her

life time.

Matt

Florida

In a message dated 1/17/2009 12:35:05 P.M. Eastern Standard Time,

jeanny-f@... writes:

I have a question, my daughter who is 20 have cml leukemia and she doesent

want to ask any question , she is in her own little world of denial,, sorry I

don't type good in anglish, im french,, lol, but I try my best ,

wen you go in remission, do you stop the pills or do you still have to take

some for the rest of your life, how long can you be in remission ,

my daughter natasha have been taking sprycel for the last year , because

gleevex did not work out to good with her, and she have lots of headack and the

flu all the time , is that normal and she is still in pain, back and leg

From: Eva

Sent: Friday, January 16, 2009 4:45 PM

_@..._ (mailto: )

Subject: Re: [ ] REMISSION AT LAST

Congrats on your remission.

Eva

From: jackie schneider

Sent: Thursday, January 15, 2009 11:04 PM

_@..._ (mailto: )

Subject: Re: [ ] REMISSION AT LAST

Congratulations n!! for joining the zero club. I'm so happy for you. I

live in Iowa which means we usually send our bad weather your direction.

Unfortunately, you are in for some very, very, cold weather in the near future.

We had record lows of -50 degrees today. Unbearable to be outside for brief

moments.

I have a very good friend from Maine. She lives way up by the Canadian

border. Beautiful country. She says the fall is the best time of year and when

they go to Houston TX for her appts, they can't hardly stand the heat. What part

of Maine do you live?

Stay warm!!

God Bless, Jackie S.

dx 4/14/04

currently in HHT trial at MDACC

From: sopranograndma <_sopranograndma@sopranogr_

(mailto:sopranograndma@...) >

Subject: [ ] REMISSION AT LAST

_@..._ (mailto: )

Date: Thursday, January 15, 2009, 9:48 PM

Hi fellow cmlers, I found out today that i,ve been in remission for

quite a while and noone told me. I have had a change of oncologists 3

times in my 8 years with cml. this last doctor I,ve only had for a few

months [i like her very very much ] shes really on the ball.I am on

sprycel have been for 2 years now, before that on hydroxiurea for 5

years and 1 year on and off gleevic [ which damaged my liver ] ended up

on 100 ml a day which someone on here told me was doing no good, oh yes

I was on injections of interferon for 2 and a half weeks before the

gleevic that almost killed me.So Zavie, can I now be in the zero club?

I,m really very HAPPY to know I,m finally in remission, thanks for all

the support everyone gives us on here, n from Maine and it,s 8

below zero right now brrr

[Guest guest]

You do not go into remission ever ,you cannot see all the cancer cell,cancer is

still there,You never stop meds you can go into blast condition.The symptoms

will subside over time if Gleevec is working and she can tolerate the

symptoms.Hope this helps ask all the questions you want.At 20 she has a long

road ahead with a few bumbs. Does this come to you in French!!

________________________________

From: jeanny <jeanny-f@...>

Sent: Saturday, January 17, 2009 11:34:33 AM

Subject: Re: [ ] REMISSION question about all this jeanny

I have a question, my daughter who is 20 have cml leukemia and she doesent want

to ask any question , she is in her own little world of denial,, sorry I don't

type good in anglish, im french,, lol, but I try my best ,

wen you go in remission, do you stop the pills or do you still have to take some

for the rest of your life, how long can you be in remission ,

my daughter natasha have been taking sprycel for the last year , because gleevex

did not work out to good with her, and she have lots of headack and the flu all

the time , is that normal and she is still in pain, back and leg

From: Eva

Sent: Friday, January 16, 2009 4:45 PM

groups (DOT) com

Subject: Re: [ ] REMISSION AT LAST

Congrats on your remission.

Eva

From: jackie schneider

Sent: Thursday, January 15, 2009 11:04 PM

groups (DOT) com

Subject: Re: [ ] REMISSION AT LAST

Congratulations n!! for joining the zero club. I'm so happy for you. I live

in Iowa which means we usually send our bad weather your direction.

Unfortunately, you are in for some very, very, cold weather in the near future.

We had record lows of -50 degrees today. Unbearable to be outside for brief

moments.

I have a very good friend from Maine. She lives way up by the Canadian border.

Beautiful country. She says the fall is the best time of year and when they go

to Houston TX for her appts, they can't hardly stand the heat. What part of

Maine do you live?

Stay warm!!

God Bless, Jackie S.

dx 4/14/04

currently in HHT trial at MDACC

From: sopranograndma <sopranograndma>

Subject: [ ] REMISSION AT LAST

groups (DOT) com

Date: Thursday, January 15, 2009, 9:48 PM

Hi fellow cmlers, I found out today that i,ve been in remission for

quite a while and noone told me. I have had a change of oncologists 3

times in my 8 years with cml. this last doctor I,ve only had for a few

months [i like her very very much ] shes really on the ball.I am on

sprycel have been for 2 years now, before that on hydroxiurea for 5

years and 1 year on and off gleevic [ which damaged my liver ] ended up

on 100 ml a day which someone on here told me was doing no good, oh yes

I was on injections of interferon for 2 and a half weeks before the

gleevic that almost killed me.So Zavie, can I now be in the zero club?

I,m really very HAPPY to know I,m finally in remission, thanks for all

the support everyone gives us on here, n from Maine and it,s 8

below zero right now brrr

[Guest guest]

>

> From: sopranograndma <sopranograndma@...>

> Subject: [ ] REMISSION AT LAST

>

> Date: Thursday, January 15, 2009, 9:48 PM

>

> Hi fellow cmlers, I found out today that i,ve been in remission for

> quite a while and noone told me. I have had a change of oncologists

3

> times in my 8 years with cml. this last doctor I,ve only had for a

few

> months [i like her very very much ] shes really on the ball.I am on

> sprycel have been for 2 years now, before that on hydroxiurea for 5

> years and 1 year on and off gleevic [ which damaged my liver ]

ended up

> on 100 ml a day which someone on here told me was doing no good, oh

yes

> I was on injections of interferon for 2 and a half weeks before the

> gleevic that almost killed me.So Zavie, can I now be in the zero

club?

> I,m really very HAPPY to know I,m finally in remission, thanks for

all

> the support everyone gives us on here, n from Maine and it,s 8

> below zero right now brrr

>

>

[Guest guest]

Hi Jeanny, here's a thought.  When you go to the doctor with your daughter, do

you go to a hospital or his office?  If it's a hospital are there only adults or

are there children there too with cancer? 

When I go the U of Michigan cancer center it breaks my heart because the little

children are there with all the adults.  The adults sit and compare stories of

their cancer, and their side effects.  And the little children go by, some in

carriages, some in wheel chairs, some walking and pushing their IV's along with

them, most of them with not a hair on their head, and almost all of them smiling

and laughing and acting like nothing is wrong with this picture. Has your

daughter seen these little children who are in the same place as she is? Would

it make a difference to her if she saw these very young little people fighting

so hard to stay alive?

Do you think it would help her realize she is one among thousands who have hope

for a cure for all of us? I don't know if it would help her understand  at all,

but maybe a walk through a  children's  cancer ward would open her eyes, I'll

keep her in my prayers, and you too, you can only do your best, and you are

doing just that, blessings, Bobby

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec

Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra

Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840  -   Zavie's

Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)  

From: suzzienovember <suzzienovember@...>

Subject: Re: [ ] REMISSION question about all this jeanny

Date: Monday, January 19, 2009, 9:53 AM

>

> From: sopranograndma <sopranograndma@ ...>

> Subject: [ ] REMISSION AT LAST

> groups (DOT) com

> Date: Thursday, January 15, 2009, 9:48 PM

>

> Hi fellow cmlers, I found out today that i,ve been in remission for

> quite a while and noone told me. I have had a change of oncologists

3

> times in my 8 years with cml. this last doctor I,ve only had for a

few

> months [i like her very very much ] shes really on the ball.I am on

> sprycel have been for 2 years now, before that on hydroxiurea for 5

> years and 1 year on and off gleevic [ which damaged my liver ]

ended up

> on 100 ml a day which someone on here told me was doing no good, oh

yes

> I was on injections of interferon for 2 and a half weeks before the

> gleevic that almost killed me.So Zavie, can I now be in the zero

club?

> I,m really very HAPPY to know I,m finally in remission, thanks for

all

> the support everyone gives us on here, n from Maine and it,s 8

> below zero right now brrr

>

>