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RE: Hello! And Tasigna Info Needed

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Posted
Posted

Hi Barb,

Sorry to hear you are having problems. Did you have a Glivec break before

commencing Tasigna? I had a 2 week break, then started on only 400mg once a

day and gradually built up over 2 weeks to the full 400mg twice a day.

I was fortunate and never had any side effects - especially as I had

migraines on Glivec. Some people do have side effects but they gradually

resolve over a few weeks as your body adjusts to the new drug. The most

important thing with Tasigna is adhering to the fasting schedules. You can

drink water in this time, but nothing else.

Why did you need to change over? Good luck, I have been on Tasi for 11

months now and just love it.

Regards,

From: [mailto: ] On Behalf Of

magnolia254

Sent: Monday, 13 July 2009 8:28 AM

Subject: [ ] Hello! And Tasigna Info Needed

Hi CML Family! Barb here. It's been a long time since I posted. I hope this

finds everyone doing great!

I am looking to see if any of you have switched from Gleevec to Tasigna? I

just did . . . 400 mgs twice a day. My side effects are a bit different on

the Tasigna - although the nausea and Diarhea are still a problem. I am

finding I have daily headaches - although they seem to be getting better -

as well as shaking. Sometimes just my hands - but also my entire body feels

a bit " shaky " . It's very odd!

If anyone can share their Tasigna thoughts / side effects with me - it would

be appreciated!

Sending all my best to each of you!

Love and Prayers!

Barb

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Posted
Posted

Hi Barb.

I went from Gleevec to Sprycel. Then off Sprycel for about three weeks and

on to Tasigna.(600mg) for over a year. I like had no side effects. And

just love it. Are you on any other medications???

Sharon

_____

From: [mailto: ] On Behalf Of

Malseed

Sent: Sunday, July 12, 2009 4:18 PM

Subject: RE: [ ] Hello! And Tasigna Info Needed

Hi Barb,

Sorry to hear you are having problems. Did you have a Glivec break before

commencing Tasigna? I had a 2 week break, then started on only 400mg once a

day and gradually built up over 2 weeks to the full 400mg twice a day.

I was fortunate and never had any side effects - especially as I had

migraines on Glivec. Some people do have side effects but they gradually

resolve over a few weeks as your body adjusts to the new drug. The most

important thing with Tasigna is adhering to the fasting schedules. You can

drink water in this time, but nothing else.

Why did you need to change over? Good luck, I have been on Tasi for 11

months now and just love it.

Regards,

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

magnolia254

Sent: Monday, 13 July 2009 8:28 AM

groups (DOT) <mailto:%40> com

Subject: [ ] Hello! And Tasigna Info Needed

Hi CML Family! Barb here. It's been a long time since I posted. I hope this

finds everyone doing great!

I am looking to see if any of you have switched from Gleevec to Tasigna? I

just did . . . 400 mgs twice a day. My side effects are a bit different on

the Tasigna - although the nausea and Diarhea are still a problem. I am

finding I have daily headaches - although they seem to be getting better -

as well as shaking. Sometimes just my hands - but also my entire body feels

a bit " shaky " . It's very odd!

If anyone can share their Tasigna thoughts / side effects with me - it would

be appreciated!

Sending all my best to each of you!

Love and Prayers!

Barb

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Posted
Posted

Hello Barb,

Welcome to the tasigna group!! Good to see your name here. It has been

a while.

I was on gleevec and switch because of side effects. I have been on

Tasigna since January 2008. The dosage was 800 for two weeks, but the

side effects were horrible. I did have a constant headache. I was taken

off for two weeks, and then I restarted at 400 mg, two pills each

morning.The side effects I have are the same ones I had on gleevec, but

at a much lesser intensity. I wonder if our weakness is just our

weakness with the TKI drugs. I do not have shaking. I do have vertigo

and tinitus ( came on with gleevec and has remained). I also have joint

effusion and pain, cramping in hands and feet, fatigue, leg and scalp

rash, and random diarrhea or constipation, it changes with diet.

Many folks I have chatted with about tasigna say that the side effects

lessen with time. I have not found that but I do think they are much

more tolerable on tasigna.

I hope this is helpful to you. Good to see you on here Barb.

Peace and hugs to all,

Barb Stanley, age 58

DX 5-5-02

Hydroxurea 5/11/02 - 6/11/02

Gleevec 400 mg 6/11/02

CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

GLeevec break 2/15-5/1 2007 ( side effects)

Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

Tasigna 400 mg 1/20 to present - (minimal side effects)

Continuing PCRU (with some side effects)

>

> Hi CML Family! Barb here. It's been a long time since I posted. I hope

this finds everyone doing great!

>

> I am looking to see if any of you have switched from Gleevec to

Tasigna? I just did . . . 400 mgs twice a day. My side effects are a bit

different on the Tasigna - although the nausea and Diarhea are still a

problem. I am finding I have daily headaches - although they seem to be

getting better - as well as shaking. Sometimes just my hands - but also

my entire body feels a bit " shaky " . It's very odd!

>

> If anyone can share their Tasigna thoughts / side effects with me - it

would be appreciated!

>

> Sending all my best to each of you!

> Love and Prayers!

> Barb

>

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Posted
Posted

This makes me worry about starting Tasigna. I go back to my Dr on the 27th of

this month and he is supposed to change me to Tasigna but after reading some of

the side effects that people are having, I am not so sure I want to try it. But

do I have a choice? Gleevec sure isn't working for me and I am having lots of

side effects from it including hair loss and the Dr in SC told me that I would

not lose my hair from taking Gleevec.

From: Barb Stanley <barbarastanley@...>

Subject: [ ] Re: Hello! And Tasigna Info Needed

Date: Monday, July 13, 2009, 1:05 PM

Hello Barb,

Welcome to the tasigna group!! Good to see your name here. It has been

a while.

I was on gleevec and switch because of side effects. I have been on

Tasigna since January 2008. The dosage was 800 for two weeks, but the

side effects were horrible. I did have a constant headache. I was taken

off for two weeks, and then I restarted at 400 mg, two pills each

morning.The side effects I have are the same ones I had on gleevec, but

at a much lesser intensity. I wonder if our weakness is just our

weakness with the TKI drugs. I do not have shaking. I do have vertigo

and tinitus ( came on with gleevec and has remained). I also have joint

effusion and pain, cramping in hands and feet, fatigue, leg and scalp

rash, and random diarrhea or constipation, it changes with diet.

Many folks I have chatted with about tasigna say that the side effects

lessen with time. I have not found that but I do think they are much

more tolerable on tasigna.

I hope this is helpful to you. Good to see you on here Barb.

Peace and hugs to all,

Barb Stanley, age 58

DX 5-5-02

Hydroxurea 5/11/02 - 6/11/02

Gleevec 400 mg 6/11/02

CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

GLeevec break 2/15-5/1 2007 ( side effects)

Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

Tasigna 400 mg 1/20 to present - (minimal side effects)

Continuing PCRU (with some side effects)

>

> Hi CML Family! Barb here. It's been a long time since I posted. I hope

this finds everyone doing great!

>

> I am looking to see if any of you have switched from Gleevec to

Tasigna? I just did . . . 400 mgs twice a day. My side effects are a bit

different on the Tasigna - although the nausea and Diarhea are still a

problem. I am finding I have daily headaches - although they seem to be

getting better - as well as shaking. Sometimes just my hands - but also

my entire body feels a bit " shaky " . It's very odd!

>

> If anyone can share their Tasigna thoughts / side effects with me - it

would be appreciated!

>

> Sending all my best to each of you!

> Love and Prayers!

> Barb

>

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Posted
Posted

>

>Gleevec sure isn't working for me and I am having lots of side effects from it

including hair loss and the Dr in SC told me that I would not lose my hair from

taking Gleevec.

>

****************************************

Hi ,

There are other reasons you could be losing your hair including thyroid or B12

problems, stress, hormonal imbalances, etc. Don't assume that it's Gleevec

without ruling out other causes. Many people have actually reported the

opposite effect with Gleevec.....hair and nails thicker and healthier than

before. Some have even seen their grey hair replaced with darker hair.

Tracey

dx Jan 2002

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Posted
Posted

Hi ,

Every drug has some form of side effects. I had a terrible time on Glivec,

although it was working very well for me. When I swapped over to Tasigna, it

was a blessing! No side effects at all - I have been on it for 11 months

now. My bloods have always been perfect and no rashes etc. However, I do

think it is causing problems with my gut now - well perhaps I should say, as

I have always had the problem and hard to say whether it is Tasigna, my IBD

progressing, stress from things happening in my life (outside CML) or a

combination of all of them. I do feel I have developed GERD from Tasigna,

given that it has to be taken in a fasting state.

Regards,

From: [mailto: ] On Behalf Of

Sent: Tuesday, 14 July 2009 12:09 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

This makes me worry about starting Tasigna. I go back to my Dr on the 27th

of this month and he is supposed to change me to Tasigna but after reading

some of the side effects that people are having, I am not so sure I want to

try it. But do I have a choice? Gleevec sure isn't working for me and I am

having lots of side effects from it including hair loss and the Dr in SC

told me that I would not lose my hair from taking Gleevec.

From: Barb Stanley <barbarastanley@... <mailto:barbarastanley%40cox.net>

>

Subject: [ ] Re: Hello! And Tasigna Info Needed

<mailto:%40>

Date: Monday, July 13, 2009, 1:05 PM

Hello Barb,

Welcome to the tasigna group!! Good to see your name here. It has been

a while.

I was on gleevec and switch because of side effects. I have been on

Tasigna since January 2008. The dosage was 800 for two weeks, but the

side effects were horrible. I did have a constant headache. I was taken

off for two weeks, and then I restarted at 400 mg, two pills each

morning.The side effects I have are the same ones I had on gleevec, but

at a much lesser intensity. I wonder if our weakness is just our

weakness with the TKI drugs. I do not have shaking. I do have vertigo

and tinitus ( came on with gleevec and has remained). I also have joint

effusion and pain, cramping in hands and feet, fatigue, leg and scalp

rash, and random diarrhea or constipation, it changes with diet.

Many folks I have chatted with about tasigna say that the side effects

lessen with time. I have not found that but I do think they are much

more tolerable on tasigna.

I hope this is helpful to you. Good to see you on here Barb.

Peace and hugs to all,

Barb Stanley, age 58

DX 5-5-02

Hydroxurea 5/11/02 - 6/11/02

Gleevec 400 mg 6/11/02

CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

GLeevec break 2/15-5/1 2007 ( side effects)

Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

Tasigna 400 mg 1/20 to present - (minimal side effects)

Continuing PCRU (with some side effects)

>

> Hi CML Family! Barb here. It's been a long time since I posted. I hope

this finds everyone doing great!

>

> I am looking to see if any of you have switched from Gleevec to

Tasigna? I just did . . . 400 mgs twice a day. My side effects are a bit

different on the Tasigna - although the nausea and Diarhea are still a

problem. I am finding I have daily headaches - although they seem to be

getting better - as well as shaking. Sometimes just my hands - but also

my entire body feels a bit " shaky " . It's very odd!

>

> If anyone can share their Tasigna thoughts / side effects with me - it

would be appreciated!

>

> Sending all my best to each of you!

> Love and Prayers!

> Barb

>

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Posted
Posted

Not everyone has the same side effects, that's one thing for certain. I couldn't

stay awake on Gleevec and I know lots of folks didn't have that problem. After

being on Gleevec for four years, I had enough hair on my head for four people!

(I'm on Sprycel now, and so far, so good).

From: wendyphillips54@...

Date: Mon, 13 Jul 2009 19:08:57 -0700

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

This makes me worry about starting Tasigna. I go back to my Dr on the 27th

of this month and he is supposed to change me to Tasigna but after reading some

of the side effects that people are having, I am not so sure I want to try it.

But do I have a choice? Gleevec sure isn't working for me and I am having lots

of side effects from it including hair loss and the Dr in SC told me that I

would not lose my hair from taking Gleevec.

From: Barb Stanley <barbarastanley@...>

Subject: [ ] Re: Hello! And Tasigna Info Needed

Date: Monday, July 13, 2009, 1:05 PM

Hello Barb,

Welcome to the tasigna group!! Good to see your name here. It has been

a while.

I was on gleevec and switch because of side effects. I have been on

Tasigna since January 2008. The dosage was 800 for two weeks, but the

side effects were horrible. I did have a constant headache. I was taken

off for two weeks, and then I restarted at 400 mg, two pills each

morning.The side effects I have are the same ones I had on gleevec, but

at a much lesser intensity. I wonder if our weakness is just our

weakness with the TKI drugs. I do not have shaking. I do have vertigo

and tinitus ( came on with gleevec and has remained). I also have joint

effusion and pain, cramping in hands and feet, fatigue, leg and scalp

rash, and random diarrhea or constipation, it changes with diet.

Many folks I have chatted with about tasigna say that the side effects

lessen with time. I have not found that but I do think they are much

more tolerable on tasigna.

I hope this is helpful to you. Good to see you on here Barb.

Peace and hugs to all,

Barb Stanley, age 58

DX 5-5-02

Hydroxurea 5/11/02 - 6/11/02

Gleevec 400 mg 6/11/02

CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

GLeevec break 2/15-5/1 2007 ( side effects)

Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

Tasigna 400 mg 1/20 to present - (minimal side effects)

Continuing PCRU (with some side effects)

>

> Hi CML Family! Barb here. It's been a long time since I posted. I hope

this finds everyone doing great!

>

> I am looking to see if any of you have switched from Gleevec to

Tasigna? I just did . . . 400 mgs twice a day. My side effects are a bit

different on the Tasigna - although the nausea and Diarhea are still a

problem. I am finding I have daily headaches - although they seem to be

getting better - as well as shaking. Sometimes just my hands - but also

my entire body feels a bit " shaky " . It's very odd!

>

> If anyone can share their Tasigna thoughts / side effects with me - it

would be appreciated!

>

> Sending all my best to each of you!

> Love and Prayers!

> Barb

>

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Posted
Posted

I LOST a lot of hair on gleevec and all my eyebrows and eyelashes. Yes it

was Gleevec. Bon on Tasigna they have all grown back. My hair is not as

thick as it used to be but it is sfine.

Sharon T

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Monday, July 13, 2009 7:23 PM

Subject: [ ] Re: Hello! And Tasigna Info Needed

>

>Gleevec sure isn't working for me and I am having lots of side effects from

it including hair loss and the Dr in SC told me that I would not lose my

hair from taking Gleevec.

>

****************************************

Hi ,

There are other reasons you could be losing your hair including thyroid or

B12 problems, stress, hormonal imbalances, etc. Don't assume that it's

Gleevec without ruling out other causes. Many people have actually reported

the opposite effect with Gleevec.....hair and nails thicker and healthier

than before. Some have even seen their grey hair replaced with darker hair.

Tracey

dx Jan 2002

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Posted
Posted

See how strange it is. Everyone has different reactions.

Some lose hair, some grow hair. Some get sick others do not.

I feel very very fortunate to be the one so far on Tasigna--over a year to

have no side effects to mention.

Sharon T

[ ] Re: Hello! And Tasigna Info Needed

Date: Monday, July 13, 2009, 1:05 PM

Hello Barb,

Welcome to the tasigna group!! Good to see your name here. It has been

a while.

I was on gleevec and switch because of side effects. I have been on

Tasigna since January 2008. The dosage was 800 for two weeks, but the

side effects were horrible. I did have a constant headache. I was taken

off for two weeks, and then I restarted at 400 mg, two pills each

morning.The side effects I have are the same ones I had on gleevec, but

at a much lesser intensity. I wonder if our weakness is just our

weakness with the TKI drugs. I do not have shaking. I do have vertigo

and tinitus ( came on with gleevec and has remained). I also have joint

effusion and pain, cramping in hands and feet, fatigue, leg and scalp

rash, and random diarrhea or constipation, it changes with diet.

Many folks I have chatted with about tasigna say that the side effects

lessen with time. I have not found that but I do think they are much

more tolerable on tasigna.

I hope this is helpful to you. Good to see you on here Barb.

Peace and hugs to all,

Barb Stanley, age 58

DX 5-5-02

Hydroxurea 5/11/02 - 6/11/02

Gleevec 400 mg 6/11/02

CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

GLeevec break 2/15-5/1 2007 ( side effects)

Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

Tasigna 400 mg 1/20 to present - (minimal side effects)

Continuing PCRU (with some side effects)

>

> Hi CML Family! Barb here. It's been a long time since I posted. I hope

this finds everyone doing great!

>

> I am looking to see if any of you have switched from Gleevec to

Tasigna? I just did . . . 400 mgs twice a day. My side effects are a bit

different on the Tasigna - although the nausea and Diarhea are still a

problem. I am finding I have daily headaches - although they seem to be

getting better - as well as shaking. Sometimes just my hands - but also

my entire body feels a bit " shaky " . It's very odd!

>

> If anyone can share their Tasigna thoughts / side effects with me - it

would be appreciated!

>

> Sending all my best to each of you!

> Love and Prayers!

> Barb

>

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Posted
Posted

Yep - my hair has always been great!

From: [mailto: ] On Behalf Of Sharon

Teichera

Sent: Tuesday, 14 July 2009 12:36 PM

Subject: RE: [ ] Re: Hello! And Tasigna Info Needed

See how strange it is. Everyone has different reactions.

Some lose hair, some grow hair. Some get sick others do not.

I feel very very fortunate to be the one so far on Tasigna--over a year to

have no side effects to mention.

Sharon T

[ ] Re: Hello! And Tasigna Info Needed

<mailto:%40>

Date: Monday, July 13, 2009, 1:05 PM

Hello Barb,

Welcome to the tasigna group!! Good to see your name here. It has been

a while.

I was on gleevec and switch because of side effects. I have been on

Tasigna since January 2008. The dosage was 800 for two weeks, but the

side effects were horrible. I did have a constant headache. I was taken

off for two weeks, and then I restarted at 400 mg, two pills each

morning.The side effects I have are the same ones I had on gleevec, but

at a much lesser intensity. I wonder if our weakness is just our

weakness with the TKI drugs. I do not have shaking. I do have vertigo

and tinitus ( came on with gleevec and has remained). I also have joint

effusion and pain, cramping in hands and feet, fatigue, leg and scalp

rash, and random diarrhea or constipation, it changes with diet.

Many folks I have chatted with about tasigna say that the side effects

lessen with time. I have not found that but I do think they are much

more tolerable on tasigna.

I hope this is helpful to you. Good to see you on here Barb.

Peace and hugs to all,

Barb Stanley, age 58

DX 5-5-02

Hydroxurea 5/11/02 - 6/11/02

Gleevec 400 mg 6/11/02

CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

GLeevec break 2/15-5/1 2007 ( side effects)

Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

Tasigna 400 mg 1/20 to present - (minimal side effects)

Continuing PCRU (with some side effects)

>

> Hi CML Family! Barb here. It's been a long time since I posted. I hope

this finds everyone doing great!

>

> I am looking to see if any of you have switched from Gleevec to

Tasigna? I just did . . . 400 mgs twice a day. My side effects are a bit

different on the Tasigna - although the nausea and Diarhea are still a

problem. I am finding I have daily headaches - although they seem to be

getting better - as well as shaking. Sometimes just my hands - but also

my entire body feels a bit " shaky " . It's very odd!

>

> If anyone can share their Tasigna thoughts / side effects with me - it

would be appreciated!

>

> Sending all my best to each of you!

> Love and Prayers!

> Barb

>

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Posted
Posted

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@...> wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@...>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

>

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

I have no side effects on Tasigna-as I have said many many times, Never ever

had any!!! Just weight gain and a little hair loss and these could have jus

happened anyway. I am 66 years old. I have been on it for a year and three

months.

And I am PCRU with a 5 log reduction.

Try it and be brave.

SharonT

_____

From: [mailto: ] On Behalf Of

mtmaynor@...

Sent: Tuesday, July 14, 2009 7:49 AM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@ <mailto:wendyphillips54%40> > wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@ <mailto:barbarastanley%40cox.net>

cox.net>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> groups (DOT) <mailto:%40> com

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not the

next logical step if Gleevec fails ?May be you guys know something that my ding

bat oncologist doesn't!!

Thanks Eva

From: mtmaynor@...

Sent: Tuesday, July 14, 2009 10:48 AM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@...> wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@...>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

>

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Eva,

I did not go right to Tasigna. I have had CML for almost 5 years. Started

with gleevec then sprycel.then Tasigna.

Sharon

_____

From: [mailto: ] On Behalf Of Eva

Sent: Tuesday, July 14, 2009 1:42 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not

the next logical step if Gleevec fails ?May be you guys know something that

my ding bat oncologist doesn't!!

Thanks Eva

From: mtmaynoraol (DOT) <mailto:mtmaynor%40aol.com> com

Sent: Tuesday, July 14, 2009 10:48 AM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@ <mailto:wendyphillips54%40> > wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@ <mailto:barbarastanley%40cox.net>

cox.net>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> groups (DOT) <mailto:%40> com

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Hi Eva,

I am a moderately severe well controlled asthmatic and the last thing I

wanted was pleural effusions! After consultation with our fore most CML

expert in Australia, he felt that Tasigna was the best drug for me because

of this. It was not done lightly I can assure you. I could only tolerate

200mg Glivec, but was a suboptimal dose for me.

Regards,

From: [mailto: ] On Behalf Of Eva

Sent: Wednesday, 15 July 2009 6:42 AM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not

the next logical step if Gleevec fails ?May be you guys know something that

my ding bat oncologist doesn't!!

Thanks Eva

From: mtmaynor@... <mailto:mtmaynor%40aol.com>

Sent: Tuesday, July 14, 2009 10:48 AM

<mailto:%40>

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@... <mailto:wendyphillips54%40> > wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@...

<mailto:barbarastanley%40cox.net> >

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> <mailto:%40>

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

As for myself, my oncologist told me that since I wasn't responding to Gleevec,

that I probably wouldn't respond to Sprycel either. I don't know, I'm just the

patient and I assume he knows what he's talking about.

>

> From: Barb Stanley <barbarastanley@ cox.net>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> groups (DOT) com

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

> > >

> > > Hi CML Family! Barb here. It's been a long time since I posted. I

> > hope

> > this finds everyone doing great!

> > >

> > > I am looking to see if any of you have switched from Gleevec to

> > Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> > bit

> > different on the Tasigna - although the nausea and Diarhea are still a

> > problem. I am finding I have daily headaches - although they seem to

> > be

> > getting better - as well as shaking. Sometimes just my hands - but

> > also

> > my entire body feels a bit " shaky " . It's very odd!

> > >

> > > If anyone can share their Tasigna thoughts / side effects with me

> > - it

> > would be appreciated!

> > >

> > > Sending all my best to each of you!

> > > Love and Prayers!

> > > Barb

> > >

> >

> >

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Posted
Posted

Hi all.  I was wondering if anyone on Sprycel gets assistance or free

prescription from this pharmeceutical company like Novartis does with Gleevec?

Thanks,

________________________________

From: Eva <evaob365@...>

Sent: Tuesday, July 14, 2009 1:41:32 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not the

next logical step if Gleevec fails ?May be you guys know something that my ding

bat oncologist doesn't!!

Thanks Eva

From: mtmaynoraol (DOT) com

Sent: Tuesday, July 14, 2009 10:48 AM

groups (DOT) com

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54> wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@ cox.net>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> groups (DOT) com

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

I will get assistance once I start my prescription with my co-pay which is

about a 1000.00 a month from Pathway to Sprycel. This is in Canada , I don't

know if it is worldwide. They are going to pay 80% of my co-pay..

Eva

From: Lomsdalen

Sent: Wednesday, July 15, 2009 1:40 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Hi all. I was wondering if anyone on Sprycel gets assistance or free

prescription from this pharmeceutical company like Novartis does with Gleevec?

Thanks,

________________________________

From: Eva <evaob365@...>

Sent: Tuesday, July 14, 2009 1:41:32 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not the

next logical step if Gleevec fails ?May be you guys know something that my ding

bat oncologist doesn't!!

Thanks Eva

From: mtmaynoraol (DOT) com

Sent: Tuesday, July 14, 2009 10:48 AM

groups (DOT) com

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54> wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@ cox.net>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> groups (DOT) com

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Oh . The top blood cancer doc in Canada is the one that told me not to worry

about not being able to continue with Gleevec because of liver issues, He said

the solution to that is to go on Sprycel and he thinks I will do better on it.

I don't know , just try to do what I'm told. LOL After a lengthy discussion that

is. This group has taught me well !

Thanks Eva

From: fjfarrellq

Sent: Wednesday, July 15, 2009 5:09 AM

Subject: [ ] Re: Hello! And Tasigna Info Needed

> > >

> > > Hi CML Family! Barb here. It's been a long time since I posted. I

> > hope

> > this finds everyone doing great!

> > >

> > > I am looking to see if any of you have switched from Gleevec to

> > Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> > bit

> > different on the Tasigna - although the nausea and Diarhea are still a

> > problem. I am finding I have daily headaches - although they seem to

> > be

> > getting better - as well as shaking. Sometimes just my hands - but

> > also

> > my entire body feels a bit " shaky " . It's very odd!

> > >

> > > If anyone can share their Tasigna thoughts / side effects with me

> > - it

> > would be appreciated!

> > >

> > > Sending all my best to each of you!

> > > Love and Prayers!

> > > Barb

> > >

> >

> >

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Posted
Posted

I hope every thing goes well for you . Sounds like a good idea for you.

Hope it works for me. All the best .

Eva

From: Malseed

Sent: Tuesday, July 14, 2009 7:37 PM

Subject: RE: [ ] Re: Hello! And Tasigna Info Needed

Hi Eva,

I am a moderately severe well controlled asthmatic and the last thing I

wanted was pleural effusions! After consultation with our fore most CML

expert in Australia, he felt that Tasigna was the best drug for me because

of this. It was not done lightly I can assure you. I could only tolerate

200mg Glivec, but was a suboptimal dose for me.

Regards,

From: [mailto: ] On Behalf Of Eva

Sent: Wednesday, 15 July 2009 6:42 AM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not

the next logical step if Gleevec fails ?May be you guys know something that

my ding bat oncologist doesn't!!

Thanks Eva

From: mtmaynor@... <mailto:mtmaynor%40aol.com>

Sent: Tuesday, July 14, 2009 10:48 AM

<mailto:%40>

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@... <mailto:wendyphillips54%40> > wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@...

<mailto:barbarastanley%40cox.net> >

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> <mailto:%40>

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Yes, I get Sprycel at no charge as I have no insurance. Their process was a bit

more cumbersome and lengthy than Novartis' but once you're approved it's smooth

sailing.

From: Lomsdalen

Sent: Wednesday, July 15, 2009 1:40 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Hi all. I was wondering if anyone on Sprycel gets assistance or free

prescription from this pharmeceutical company like Novartis does with Gleevec?

Thanks,

________________________________

From: Eva <evaob365@...>

Sent: Tuesday, July 14, 2009 1:41:32 PM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not the

next logical step if Gleevec fails ?May be you guys know something that my ding

bat oncologist doesn't!!

Thanks Eva

From: mtmaynoraol (DOT) com

Sent: Tuesday, July 14, 2009 10:48 AM

groups (DOT) com

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54> wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@ cox.net>

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> groups (DOT) com

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Hi Eva - thank you, I started Tasigna last August and by December I was PCRU

and have remained so since, so it is working fabulously well for me! Good

luck with Sprycel.

Regards,

From: [mailto: ] On Behalf Of Eva

Sent: Thursday, 16 July 2009 7:45 AM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

I hope every thing goes well for you . Sounds like a good idea for you.

Hope it works for me. All the best .

Eva

From: Malseed

Sent: Tuesday, July 14, 2009 7:37 PM

<mailto:%40>

Subject: RE: [ ] Re: Hello! And Tasigna Info Needed

Hi Eva,

I am a moderately severe well controlled asthmatic and the last thing I

wanted was pleural effusions! After consultation with our fore most CML

expert in Australia, he felt that Tasigna was the best drug for me because

of this. It was not done lightly I can assure you. I could only tolerate

200mg Glivec, but was a suboptimal dose for me.

Regards,

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

Eva

Sent: Wednesday, 15 July 2009 6:42 AM

<mailto:%40>

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not

the next logical step if Gleevec fails ?May be you guys know something that

my ding bat oncologist doesn't!!

Thanks Eva

From: mtmaynor@... <mailto:mtmaynor%40aol.com>

<mailto:mtmaynor%40aol.com>

Sent: Tuesday, July 14, 2009 10:48 AM

<mailto:%40>

<mailto:%40>

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@... <mailto:wendyphillips54%40>

<mailto:wendyphillips54%40> > wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@...

<mailto:barbarastanley%40cox.net>

<mailto:barbarastanley%40cox.net> >

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> <mailto:%40>

<mailto:%40>

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Posted
Posted

Thanks

From: Malseed

Sent: Wednesday, July 15, 2009 9:04 PM

Subject: RE: [ ] Re: Hello! And Tasigna Info Needed

Hi Eva - thank you, I started Tasigna last August and by December I was PCRU

and have remained so since, so it is working fabulously well for me! Good

luck with Sprycel.

Regards,

From: [mailto: ] On Behalf Of Eva

Sent: Thursday, 16 July 2009 7:45 AM

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

I hope every thing goes well for you . Sounds like a good idea for you.

Hope it works for me. All the best .

Eva

From: Malseed

Sent: Tuesday, July 14, 2009 7:37 PM

<mailto:%40>

Subject: RE: [ ] Re: Hello! And Tasigna Info Needed

Hi Eva,

I am a moderately severe well controlled asthmatic and the last thing I

wanted was pleural effusions! After consultation with our fore most CML

expert in Australia, he felt that Tasigna was the best drug for me because

of this. It was not done lightly I can assure you. I could only tolerate

200mg Glivec, but was a suboptimal dose for me.

Regards,

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf Of

Eva

Sent: Wednesday, 15 July 2009 6:42 AM

<mailto:%40>

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Why are you guys going straight to Tasigna and not Sprycel? When my liver

enzymes return to normal I am supposed to start on Sprycel. Is this drug not

the next logical step if Gleevec fails ?May be you guys know something that

my ding bat oncologist doesn't!!

Thanks Eva

From: mtmaynor@... <mailto:mtmaynor%40aol.com>

<mailto:mtmaynor%40aol.com>

Sent: Tuesday, July 14, 2009 10:48 AM

<mailto:%40>

<mailto:%40>

Subject: Re: [ ] Re: Hello! And Tasigna Info Needed

Tasigna has been very good for me as it

has taken me to PCRU and reduced my

GI side effects.

Sent from my iPhone

On Jul 13, 2009, at 10:08 PM,

<wendyphillips54@... <mailto:wendyphillips54%40>

<mailto:wendyphillips54%40> > wrote:

>

>

> This makes me worry about starting Tasigna. I go back to my Dr on

> the 27th of this month and he is supposed to change me to Tasigna

> but after reading some of the side effects that people are having, I

> am not so sure I want to try it. But do I have a choice? Gleevec

> sure isn't working for me and I am having lots of side effects from

> it including hair loss and the Dr in SC told me that I would not

> lose my hair from taking Gleevec.

>

>

>

>

> From: Barb Stanley <barbarastanley@...

<mailto:barbarastanley%40cox.net>

<mailto:barbarastanley%40cox.net> >

> Subject: [ ] Re: Hello! And Tasigna Info Needed

> <mailto:%40>

<mailto:%40>

> Date: Monday, July 13, 2009, 1:05 PM

>

> Hello Barb,

>

> Welcome to the tasigna group!! Good to see your name here. It has been

> a while.

>

> I was on gleevec and switch because of side effects. I have been on

> Tasigna since January 2008. The dosage was 800 for two weeks, but the

> side effects were horrible. I did have a constant headache. I was

> taken

> off for two weeks, and then I restarted at 400 mg, two pills each

> morning.The side effects I have are the same ones I had on gleevec,

> but

> at a much lesser intensity. I wonder if our weakness is just our

> weakness with the TKI drugs. I do not have shaking. I do have vertigo

> and tinitus ( came on with gleevec and has remained). I also have

> joint

> effusion and pain, cramping in hands and feet, fatigue, leg and scalp

> rash, and random diarrhea or constipation, it changes with diet.

>

> Many folks I have chatted with about tasigna say that the side effects

> lessen with time. I have not found that but I do think they are much

> more tolerable on tasigna.

>

> I hope this is helpful to you. Good to see you on here Barb.

> Peace and hugs to all,

>

> Barb Stanley, age 58

>

> DX 5-5-02

>

> Hydroxurea 5/11/02 - 6/11/02

>

> Gleevec 400 mg 6/11/02

>

> CCR 8/1/02; MMR 12/10/02; PCRU 3/17/03

>

> GLeevec break 2/15-5/1 2007 ( side effects)

>

> Gleevec 300 mg 5/1 - 12/15 2007( increasing side effects)

>

> Tasigna 800 mg 12/27/07 - 1/12/08 ( major side effects)

>

> Tasigna 400 mg 1/20 to present - (minimal side effects)

>

> Continuing PCRU (with some side effects)

>

>

> >

> > Hi CML Family! Barb here. It's been a long time since I posted. I

> hope

> this finds everyone doing great!

> >

> > I am looking to see if any of you have switched from Gleevec to

> Tasigna? I just did . . . 400 mgs twice a day. My side effects are a

> bit

> different on the Tasigna - although the nausea and Diarhea are still a

> problem. I am finding I have daily headaches - although they seem to

> be

> getting better - as well as shaking. Sometimes just my hands - but

> also

> my entire body feels a bit " shaky " . It's very odd!

> >

> > If anyone can share their Tasigna thoughts / side effects with me

> - it

> would be appreciated!

> >

> > Sending all my best to each of you!

> > Love and Prayers!

> > Barb

> >

>

>

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Guest guest

Guest guest

Posted
Posted

>

> As for myself, my oncologist told me that since I wasn't responding to

Gleevec, that I probably wouldn't respond to Sprycel either. I don't know, I'm

just the patient and I assume he knows what he's talking about.

>

__________________

Hi ,

That is not the thinking of Dr. Druker. He actually told me that if you did not

respond to Gleevec, then Sprycel was probably a better option (no one knows for

sure at this point, not enough data). Sprycel has a second pathway. Tasigna is

really kind of a 'suped up' Gleevec, which is not to say that you should not try

it. I think the biggest reason for choosing one drug over the other is that

Spycel had the lung issues and Tasigna has some heart concerns....so depending

on your medical history, one drug might be a better choice for a patient. These

are both 2nd generation TKIs (tyrosine kinase inhibitors).

C.

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