RE: im a mother of a 19 year old daughter with cml

[Guest guest]

Hi Jeanny,

Please don't worry. There are many members here who are on Sprycel

and they are doing very well on the drug.

I'm sure will post and reassure you as well. Her husband

had the exact same problem that Natasha had. He developed liver

toxicity on Gleevec and was switched to Sprycel. He's doing very

well now so please try not to worry too much about Natasha taking

Sprycel.

I'm not aware of the drug interactons between Paxil and Sprycel but

you should ask Natasha's doctor if she can take another drug for her

depression/anxiety. There are many drugs that treat this problem so

hopefully they will be able to give her one that doesn't cause a

problem with Sprycel.

Take care,

Tracey

>

> im having a very hard time dealing with this, my daughter natasha

have

> leukemia, cml, and she as a son he is only 18 months old, and she

is

> not doing to good, we found out about this about 6 months ago, she

was

> on gleevec for 5 months and had to stop and go in hopital, her

liver

> was faling, her exime was 964 , they did all kind of test , and now

> they want to start her on stycel 70 , and she is so scard to take

> them, she is taking paxil for her exiety attack and she is not

supose

> to mixe them together, it will thin out her blood to much, so again

we

> have to clue what to do , did any body in here, had the same

problem

> and can help us , im so scard for her,

> o and im sorry if i do mistake in anglish but i am french, and if i

go

> in the french cml , i dont understand them because they talk the

> french french, me im belingual , i talk the north of ontario , lol,

> well all of you take care and maybe some body can answer some of my

> question or put my hopes up

> Thanks

> Sincerely Jeanny

>

[Guest guest]

Hi Jeanny,

Most reports say that people who have liver problems with gleevec do well on

sprycel or tasigna, so hang in there, chances are good it will get better. I

am a french french living in California

Marcos.

On 12/4/07, jeanny <jeanny-f@...> wrote:

>

> im having a very hard time dealing with this, my daughter natasha have

> leukemia, cml, and she as a son he is only 18 months old, and she is

> not doing to good, we found out about this about 6 months ago, she was

> on gleevec for 5 months and had to stop and go in hopital, her liver

> was faling, her exime was 964 , they did all kind of test , and now

> they want to start her on stycel 70 , and she is so scard to take

> them, she is taking paxil for her exiety attack and she is not supose

> to mixe them together, it will thin out her blood to much, so again we

> have to clue what to do , did any body in here, had the same problem

> and can help us , im so scard for her,

> o and im sorry if i do mistake in anglish but i am french, and if i go

> in the french cml , i dont understand them because they talk the

> french french, me im belingual , i talk the north of ontario , lol,

> well all of you take care and maybe some body can answer some of my

> question or put my hopes up

> Thanks

> Sincerely Jeanny

>

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/

[Guest guest]

Hi Jeanny,

I am on Gleevec but everyone is right about Sprycel, in fact my doc told me

that if I ever was unable to take Gleevec that Sprycel works great:)

On Dec 4, 2007 10:47 PM, Marcos Perreau Guimaraes <

montereyunderwater@...> wrote:

> Hi Jeanny,

> Most reports say that people who have liver problems with gleevec do well

> on

> sprycel or tasigna, so hang in there, chances are good it will get better.

> I

> am a french french living in California

> Marcos.

>

> On 12/4/07, jeanny <jeanny-f@... <jeanny-f%40hotmail.com>> wrote:

> >

> > im having a very hard time dealing with this, my daughter natasha have

> > leukemia, cml, and she as a son he is only 18 months old, and she is

> > not doing to good, we found out about this about 6 months ago, she was

> > on gleevec for 5 months and had to stop and go in hopital, her liver

> > was faling, her exime was 964 , they did all kind of test , and now

> > they want to start her on stycel 70 , and she is so scard to take

> > them, she is taking paxil for her exiety attack and she is not supose

> > to mixe them together, it will thin out her blood to much, so again we

> > have to clue what to do , did any body in here, had the same problem

> > and can help us , im so scard for her,

> > o and im sorry if i do mistake in anglish but i am french, and if i go

> > in the french cml , i dont understand them because they talk the

> > french french, me im belingual , i talk the north of ontario , lol,

> > well all of you take care and maybe some body can answer some of my

> > question or put my hopes up

> > Thanks

> > Sincerely Jeanny

> >

> >

> >

>

> --

> Marcos Perreau Guimaraes

> Suppes Brain Lab

> Ventura Hall - CSLI

> Stanford University

> 220 Panama street

> Stanford CA 94305-4101

> 650 614 2305

> 650 630 5015 (cell)

> marcospg@... <marcospg%40csli.stanford.edu>

> montereyunderwater@... <montereyunderwater%40gmail.com>

> www.stanford.edu/~marcospg/

>

>

[Guest guest]

Hi,

I am 39, and am on my third medication. I had platlet issues. I occasionally

take zoloft for anxiety.

It is safe with Sprycel. I am on 100mg, and I take 25 to 50 mg of the zoloft.

Mel

-------------- Original message from " jeanny " <jeanny-f@...>:

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

im having a very hard time dealing with this, my daughter natasha have

leukemia, cml, and she as a son he is only 18 months old, and she is

not doing to good, we found out about this about 6 months ago, she was

on gleevec for 5 months and had to stop and go in hopital, her liver

was faling, her exime was 964 , they did all kind of test , and now

they want to start her on stycel 70 , and she is so scard to take

them, she is taking paxil for her exiety attack and she is not supose

to mixe them together, it will thin out her blood to much, so again we

have to clue what to do , did any body in here, had the same problem

and can help us , im so scard for her,

o and im sorry if i do mistake in anglish but i am french, and if i go

in the french cml , i dont understand them because they talk the

french french, me im belingual , i talk the north of ontario , lol,

well all of you take care and maybe some body can answer some of my

question or put my hopes up

Thanks

Sincerely Jeanny

[Guest guest]

thank you for your respond, i will let her know for sure, i have put picture of

natasha in here to see, if you want to see natasha she is in the picture zone

@...: g8trdoc81@...: Wed, 5 Dec 2007

15:02:01 +0000Subject: Re: [ ] im a mother of a 19 year old daughter with

cml

Hi,I am 39, and am on my third medication. I had platlet issues. I occasionally

take zoloft for anxiety. It is safe with Sprycel. I am on 100mg, and I take 25

to 50 mg of the zoloft.Mel-------------- Original message from " jeanny "

<jeanny-f@...>: -------------- im having a very hard time dealing with

this, my daughter natasha have leukemia, cml, and she as a son he is only 18

months old, and she is not doing to good, we found out about this about 6 months

ago, she was on gleevec for 5 months and had to stop and go in hopital, her

liver was faling, her exime was 964 , they did all kind of test , and now they

want to start her on stycel 70 , and she is so scard to take them, she is taking

paxil for her exiety attack and she is not supose to mixe them together, it will

thin out her blood to much, so again we have to clue what to do , did any body

in here, had the same problem and can help us , im so scard for her, o and im

sorry if i do mistake in anglish but i am french, and if i go in the french cml

, i dont understand them because they talk the french french, me im belingual ,

i talk the north of ontario , lol, well all of you take care and maybe some body

can answer some of my question or put my hopes up ThanksSincerely Jeanny

[Guest guest]

Hi there -

My husband is 35, we also have an 18-month old, we have a boy. My husband, too,

had to go off Gleevec because of liver issues. He, too, only lasted about 6

months on Gleevec. He is now on Sprycel (the highest dose at 140/mg day) and is

doing EXCELLENT. He has hardly any side affects at all and most days, in his

words, " feels normal. " It did take about 2 months for him to adjust to Sprycel.

I think with CML and these medications, you have to cycle through the disease

for about a year or so, find the medication that works best for you, and adjust.

All of this happens with time. I think your daughter will return to a pretty

" normal " life once she adjusts to Sprycel and learns how her body reacts to it.

I dont know about Paxil and Sprycel, so I cant help you there, but I am sure

many others on this forum have already answered those questions.

Please know you are in our thoughts and prayers, and strength to you and your

daughter.

Regards,

Cervera (wife of Cervera, diagnosed with CML 06/2006. Currently on

140mg Sprycel daily).

@...: jeanny-f@...: Wed, 5 Dec 2007 00:31:41

+0000Subject: [ ] im a mother of a 19 year old daughter with cml

im having a very hard time dealing with this, my daughter natasha have leukemia,

cml, and she as a son he is only 18 months old, and she is not doing to good, we

found out about this about 6 months ago, she was on gleevec for 5 months and had

to stop and go in hopital, her liver was faling, her exime was 964 , they did

all kind of test , and now they want to start her on stycel 70 , and she is so

scard to take them, she is taking paxil for her exiety attack and she is not

supose to mixe them together, it will thin out her blood to much, so again we

have to clue what to do , did any body in here, had the same problem and can

help us , im so scard for her, o and im sorry if i do mistake in anglish but i

am french, and if i go in the french cml , i dont understand them because they

talk the french french, me im belingual , i talk the north of ontario , lol,

well all of you take care and maybe some body can answer some of my question or

put my hopes up ThanksSincerely Jeanny

_________________________________________________________________

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[Guest guest]

Dear Jeanny

Natasha is beautiful as is her son! :-) I am sorry that she has

been diagnosed with cml and hope that in the next few days she starts

feeling much better.

I don't have any words of advice for you regarding sprycel as my son,

, is on gleevec and we are tremendously fortunate that he is

doing fine on it. But I did want to drop in and send you a hug, from

one mom to another and send sincere wishes that Natasha's cml road

smoothes out really soon. I know the difference that will make to

you too.

I know you are scared for her, but always remember that the drugs

developed for cml are working wonders as so many others on the board

have said.

With a sincere cyber hug, lots of love and light

Annie

's mom

http://livingwithcml.blogspot.com

>

> im having a very hard time dealing with this, my daughter natasha

have > leukemia, cml, and she as a son he is only 18 months old, and

she is > not doing to good, we found out about this about 6 months

ago, she was > on gleevec for 5 months and had to stop and go in

hopital, her liver > was faling, her exime was 964 , they did all

kind of test , and now > they want to start her on stycel 70 , and

she is so scard to take > them, she is taking paxil for her exiety

attack and she is not supose > to mixe them together, it will thin

out her blood to much, so again we > have to clue what to do , did

any body in here, had the same problem > and can help us , im so

scard for her, > o and im sorry if i do mistake in anglish but i am

french, and if i go > in the french cml , i dont understand them

because they talk the > french french, me im belingual , i talk the

north of ontario , lol, > well all of you take care and maybe some

body can answer some of my

> question or put my hopes up

> Thanks

> Sincerely Jeanny

>

[Guest guest]

Dear Jeanny

I am so sorry to hear about the loss of your mom - that must be just

absolutely awful and then so soon after that, this diagnosis. I wish

I could make it easier for you.

is 24 years old now and was diagnosed in March 06. My world

also came crashing around my shoulders and I never thought life would

be good again. But it is. If I look out of my kitchen window I can

see the notice board of the local funeral home a block away. I used

to stand there way into the middle of the nights and just cry -

trying so hard not to believe that 's name would be there. It

took me a long time to get a grip on things, and I did not have the

added loss of my mom too....

After being non functional for a few months, I had to make sure that

I was strong for and so I started taking care of myself. I

started walking every day. I walked in anger, in frustration and

hurt. It certainly helped my emotions, but unfortunately not my

hips. Please make sure you work towards taking care of yourself, you

sound like a super mom and you need your strength, not only for your

daughter and grandson, but for you too.

Jeanny, please feel free to email me directly if you want to - my

email is ibannie @ comcast.net. and I would love to talk to you via

email too. We can all help each other through this very difficult

times with this disease in our kids.

Its rough, its really rough having a kid with cancer, but I will

believe with all my heart that our kids will live to see the cure for

this. I believe it with all my heart - I actually spend time

planning that party!

Hang in Jeanny, and again, feel free to email me directly anytime, ok?

Love and Light and a big hug

Annie

's mom

http://livingwithcml.blogspot.com

>

> thank you Annie, im having such a hard time dealing with all this,

how old is your son, its been how long he have been diagnosed, me im

not doing to good, on a dipression, i have lost my mom , and 4 days

after that, my daughter was diagnose with cml, its a lot to deal

with, and i cant figure out how to come true, im there for her , and

i help a lot with her son, because she is very tiyerd, , but i am

to, im so so tiyerd, it seem like i can never sleep, and i have such

a hard time breathing, a friend of mine lost her boy this summer of

cancer ,and i told her, i coudent even imagine what you are going

true, and i dont want to know, it should be so hard,, and guess what,

now im in the same boat, and now i really know how she feels, how can

a mother breath without her child,

> sincerely jeanny

> god bless you and your son and i will pray for you

>

>

>

> @...: ibannie@...: Thu, 6 Dec 2007 03:38:52 +0000Subject:

[ ] Re: im a mother of a 19 year old daughter with cml

>

>

>

>

> Dear JeannyNatasha is beautiful as is her son! :-) I am sorry that

she has been diagnosed with cml and hope that in the next few days

she starts feeling much better.I don't have any words of advice for

you regarding sprycel as my son, , is on gleevec and we are

tremendously fortunate that he is doing fine on it. But I did want to

drop in and send you a hug, from one mom to another and send sincere

wishes that Natasha's cml road smoothes out really soon. I know the

difference that will make to you too.I know you are scared for her,

but always remember that the drugs developed for cml are working

wonders as so many others on the board have said. With a sincere

cyber hug, lots of love and lightAnnie's

momhttp://livingwithcml.blogspot.com>> im having a very hard time

dealing with this, my daughter natasha have > leukemia, cml, and she

as a son he is only 18 months old, and she is > not doing to good, we

found out about this about 6 months ago, she was > on gleevec for 5

months and had to stop and go in hopital, her liver > was faling, her

exime was 964 , they did all kind of test , and now > they want to

start her on stycel 70 , and she is so scard to take > them, she is

taking paxil for her exiety attack and she is not supose > to mixe

them together, it will thin out her blood to much, so again we > have

to clue what to do , did any body in here, had the same problem > and

can help us , im so scard for her, > o and im sorry if i do mistake

in anglish but i am french, and if i go > in the french cml , i dont

understand them because they talk the > french french, me im

belingual , i talk the north of ontario , lol, > well all of you take

care and maybe some body can answer some of my > question or put my

hopes up > Thanks> Sincerely Jeanny>

>

>

>

>

>

>

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