Re: Switch to Nilotinib or take a drug hiatus?

[Guest guest]

I was taken off of Sprycel (140 mg) for 11 weeks a year ago My Dr did not tell

me why but I was having breathing issues and 0 whitecells as well as 0

platelets, and when I went back on I only take 90 Mg. I no not had the breathing

issues or the problem with platelets and white cells since.

Anita

________________________________

From: <barndt@...>

Sent: Friday, March 6, 2009 7:24:01 AM

Subject: [ ] Switch to Nilotinib or take a drug hiatus?

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but could

not tolerate it and was switched to Sprycel which I have been tolerating fairly

well for a year and a half. My liver counts were up for several years, but only

mildly and consistent. However, on Wednesday my bloodwork showed that they

skyrocketed. ast 116, alt 122, ggt 333. Normal counts are <35, 0-28,0-32

respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib is

known to be harder on the liver. He said that twice. I had other thoughts, and

suggested I go off all pain killers, anti-inflamatories( I have been on

diclofenic for years for chronic back issues, they are heavy duty) and go on a

liver healthy diet. He agreed.. He is ordering a liver biopsy and I will see him

again in two weeks to discuss the results and the next steps. This is going to

be hard for me as I am a chronic pain sufferer, but it seems to me that pain is

not life-threatening, liver disease and CML are.

I am loathe to switch to Nilotinib only to find it is harder on the liver. Also,

I have already ruled out gleevec as an option for me and I am not ready to give

up on sprycel. My current thinking is if the reduction of other prescription

drugs as well as diet change is not going to correct the liver problem I would

like to try going off the sprycel until my liver heals then go back on it again.

I have heard of people going off gleevec for periods of time for certain health

issues as well as for pregnancy with great results, but I have not heard of

anyone doing the same with sprycel. Does anyone have an experience or knowledge

that can help me to discern what my next best steps are?

Thank you

[Guest guest]

Anita,

It amazes me how differently we all react to the medications. I was taken

off of Sprycel after three years because of Plural Effusion-but it did not

affect my blood counts.

Sharon

_____

From: [mailto: ] On Behalf Of anita

Sent: Friday, March 06, 2009 9:53 AM

Subject: Re: [ ] Switch to Nilotinib or take a drug hiatus?

I was taken off of Sprycel (140 mg) for 11 weeks a year ago My Dr did not

tell me why but I was having breathing issues and 0 whitecells as well as 0

platelets, and when I went back on I only take 90 Mg. I no not had the

breathing issues or the problem with platelets and white cells since.

Anita

________________________________

From: <barndtcogeco (DOT) <mailto:barndt%40cogeco.ca> ca>

groups (DOT) <mailto:%40> com

Sent: Friday, March 6, 2009 7:24:01 AM

Subject: [ ] Switch to Nilotinib or take a drug hiatus?

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but

could not tolerate it and was switched to Sprycel which I have been

tolerating fairly well for a year and a half. My liver counts were up for

several years, but only mildly and consistent. However, on Wednesday my

bloodwork showed that they skyrocketed. ast 116, alt 122, ggt 333. Normal

counts are <35, 0-28,0-32 respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib

is known to be harder on the liver. He said that twice. I had other

thoughts, and suggested I go off all pain killers, anti-inflamatories( I

have been on diclofenic for years for chronic back issues, they are heavy

duty) and go on a liver healthy diet. He agreed.. He is ordering a liver

biopsy and I will see him again in two weeks to discuss the results and the

next steps. This is going to be hard for me as I am a chronic pain sufferer,

but it seems to me that pain is not life-threatening, liver disease and CML

are.

I am loathe to switch to Nilotinib only to find it is harder on the liver.

Also, I have already ruled out gleevec as an option for me and I am not

ready to give up on sprycel. My current thinking is if the reduction of

other prescription drugs as well as diet change is not going to correct the

liver problem I would like to try going off the sprycel until my liver heals

then go back on it again.

I have heard of people going off gleevec for periods of time for certain

health issues as well as for pregnancy with great results, but I have not

heard of anyone doing the same with sprycel. Does anyone have an experience

or knowledge that can help me to discern what my next best steps are?

Thank you

[Guest guest]

I was on dasatinib for about 6 months or more and had nothing but trouble with

Plural Effusion and other problems.  I was taken off dasatinib and went back to

Nilotinib

where it appears I am now getting use to nilotinib. I am starting to feel well,

I am up to

600 mg a day.  I am still getting infused with platlets about twice a week, and

around 3 weeks I get Hgb (2 bags), so it appears that even though you fail a

drug a workaround can be found, at least temporary. I am not sure where we go

from here I take nilotinib

400 mg morning and 200 mg 12 hours later.  no food for 2 hours before and one

hour after.

I am still on Exjade for high farritine count, although I must admit it seems to

be getting

easier to take.  I know that all these infusions of Plts and Hgb make the iron

count in the blood very high. It has been quite a ride

SkipD

dx'ed 30++++ years ago..and like a timex watch I just keep ticking and ticking

etc 

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] Switch to Nilotinib or take a drug hiatus?

Date: Friday, March 6, 2009, 1:55 PM

Anita,

It amazes me how differently we all react to the medications. I was taken

off of Sprycel after three years because of Plural Effusion-but it did not

affect my blood counts.

Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of anita

Sent: Friday, March 06, 2009 9:53 AM

groups (DOT) com

Subject: Re: [ ] Switch to Nilotinib or take a drug hiatus?

I was taken off of Sprycel (140 mg) for 11 weeks a year ago My Dr did not

tell me why but I was having breathing issues and 0 whitecells as well as 0

platelets, and when I went back on I only take 90 Mg. I no not had the

breathing issues or the problem with platelets and white cells since.

Anita

____________ _________ _________ __

From: <barndtcogeco (DOT) <mailto:barndt% 40cogeco. ca> ca>

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

Sent: Friday, March 6, 2009 7:24:01 AM

Subject: [ ] Switch to Nilotinib or take a drug hiatus?

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but

could not tolerate it and was switched to Sprycel which I have been

tolerating fairly well for a year and a half. My liver counts were up for

several years, but only mildly and consistent. However, on Wednesday my

bloodwork showed that they skyrocketed. ast 116, alt 122, ggt 333. Normal

counts are <35, 0-28,0-32 respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib

is known to be harder on the liver. He said that twice. I had other

thoughts, and suggested I go off all pain killers, anti-inflamatories( I

have been on diclofenic for years for chronic back issues, they are heavy

duty) and go on a liver healthy diet. He agreed.. He is ordering a liver

biopsy and I will see him again in two weeks to discuss the results and the

next steps. This is going to be hard for me as I am a chronic pain sufferer,

but it seems to me that pain is not life-threatening, liver disease and CML

are.

I am loathe to switch to Nilotinib only to find it is harder on the liver.

Also, I have already ruled out gleevec as an option for me and I am not

ready to give up on sprycel. My current thinking is if the reduction of

other prescription drugs as well as diet change is not going to correct the

liver problem I would like to try going off the sprycel until my liver heals

then go back on it again.

I have heard of people going off gleevec for periods of time for certain

health issues as well as for pregnancy with great results, but I have not

heard of anyone doing the same with sprycel. Does anyone have an experience

or knowledge that can help me to discern what my next best steps are?

Thank you

[Guest guest]

I went to my doc so exasperated and desperate because of the side effects of

Gleevec, and seeking to switch to Tasigna. He discouraged me vociferously,

saying Tasigna presents much more serious side effects, mainly threats to the

heart. He said it is certainly not something he would do if he were in my shoes.

He also said all my labs look good.

I had given myself a two-plus week vacation from Gleevec, just because I had to

get some things done, and on Gleevec, I'm either asleep or in the depths of

despair most of the time. I was feeling pretty decent by about day 7 or 8. After

my doctor visit, I came home, took my Gleevec (400 mg), went to sleep and I'm

just now getting up and around at 4 p.m. the next day. Sheesh!

I'm wondering if I should abandon all thoughts of switching to Tasigna --

perhaps I am glorifying it in my mind. Wishful thinking?

I will start seeing a new doctor in a couple weeks. Meantime, I'm thinking of

just staying off Gleevec. How long can one safely take a vacation?

From: skipd_2002@...

Date: Fri, 6 Mar 2009 14:45:33 -0800

Subject: RE: [ ] Switch to Nilotinib or take a drug hiatus?

I was on dasatinib for about 6 months or more and had nothing but

trouble with Plural Effusion and other problems. I was taken off dasatinib and

went back to Nilotinib

where it appears I am now getting use to nilotinib. I am starting to feel well,

I am up to

600 mg a day. I am still getting infused with platlets about twice a week, and

around 3 weeks I get Hgb (2 bags), so it appears that even though you fail a

drug a workaround can be found, at least temporary. I am not sure where we go

from here I take nilotinib

400 mg morning and 200 mg 12 hours later. no food for 2 hours before and one

hour after.

I am still on Exjade for high farritine count, although I must admit it seems to

be getting

easier to take. I know that all these infusions of Plts and Hgb make the iron

count in the blood very high. It has been quite a ride

SkipD

dx'ed 30++++ years ago..and like a timex watch I just keep ticking and ticking

etc

From: Sharon Teichera <onthewtr@...>

Subject: RE: [ ] Switch to Nilotinib or take a drug hiatus?

Date: Friday, March 6, 2009, 1:55 PM

Anita,

It amazes me how differently we all react to the medications. I was taken

off of Sprycel after three years because of Plural Effusion-but it did not

affect my blood counts.

Sharon

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of anita

Sent: Friday, March 06, 2009 9:53 AM

groups (DOT) com

Subject: Re: [ ] Switch to Nilotinib or take a drug hiatus?

I was taken off of Sprycel (140 mg) for 11 weeks a year ago My Dr did not

tell me why but I was having breathing issues and 0 whitecells as well as 0

platelets, and when I went back on I only take 90 Mg. I no not had the

breathing issues or the problem with platelets and white cells since.

Anita

____________ _________ _________ __

From: <barndtcogeco (DOT) <mailto:barndt% 40cogeco. ca> ca>

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

Sent: Friday, March 6, 2009 7:24:01 AM

Subject: [ ] Switch to Nilotinib or take a drug hiatus?

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but

could not tolerate it and was switched to Sprycel which I have been

tolerating fairly well for a year and a half. My liver counts were up for

several years, but only mildly and consistent. However, on Wednesday my

bloodwork showed that they skyrocketed. ast 116, alt 122, ggt 333. Normal

counts are <35, 0-28,0-32 respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib

is known to be harder on the liver. He said that twice. I had other

thoughts, and suggested I go off all pain killers, anti-inflamatories( I

have been on diclofenic for years for chronic back issues, they are heavy

duty) and go on a liver healthy diet. He agreed.. He is ordering a liver

biopsy and I will see him again in two weeks to discuss the results and the

next steps. This is going to be hard for me as I am a chronic pain sufferer,

but it seems to me that pain is not life-threatening, liver disease and CML

are.

I am loathe to switch to Nilotinib only to find it is harder on the liver.

Also, I have already ruled out gleevec as an option for me and I am not

ready to give up on sprycel. My current thinking is if the reduction of

other prescription drugs as well as diet change is not going to correct the

liver problem I would like to try going off the sprycel until my liver heals

then go back on it again.

I have heard of people going off gleevec for periods of time for certain

health issues as well as for pregnancy with great results, but I have not

heard of anyone doing the same with sprycel. Does anyone have an experience

or knowledge that can help me to discern what my next best steps are?

Thank you

[Guest guest]

God Bless us all Skip you are my hero.

________________________________

From: Skip Duffie <skipd_2002@...>

Sent: Friday, March 6, 2009 4:45:33 PM

Subject: RE: [ ] Switch to Nilotinib or take a drug hiatus?

I was on dasatinib for about 6 months or more and had nothing but trouble with

Plural Effusion and other problems.  I was taken off dasatinib and went back to

Nilotinib

where it appears I am now getting use to nilotinib. I am starting to feel well,

I am up to

600 mg a day.  I am still getting infused with platlets about twice a week, and

around 3 weeks I get Hgb (2 bags), so it appears that even though you fail a

drug a workaround can be found, at least temporary. I am not sure where we go

from here I take nilotinib

400 mg morning and 200 mg 12 hours later.  no food for 2 hours before and one

hour after.

I am still on Exjade for high farritine count, although I must admit it seems to

be getting

easier to take.  I know that all these infusions of Plts and Hgb make the iron

count in the blood very high. It has been quite a ride

SkipD

dx'ed 30++++ years ago..and like a timex watch I just keep ticking and ticking

etc 

From: Sharon Teichera <onthewtrdiscobay (DOT) net>

Subject: RE: [ ] Switch to Nilotinib or take a drug hiatus?

groups (DOT) com

Date: Friday, March 6, 2009, 1:55 PM

Anita,

It amazes me how differently we all react to the medications. I was taken

off of Sprycel after three years because of Plural Effusion-but it did not

affect my blood counts.

Sharon

_____

From: groups (DOT) com [mailto:] On Behalf Of anita

Sent: Friday, March 06, 2009 9:53 AM

groups (DOT) com

Subject: Re: [ ] Switch to Nilotinib or take a drug hiatus?

I was taken off of Sprycel (140 mg) for 11 weeks a year ago My Dr did not

tell me why but I was having breathing issues and 0 whitecells as well as 0

platelets, and when I went back on I only take 90 Mg. I no not had the

breathing issues or the problem with platelets and white cells since.

Anita

____________ _________ _________ __

From: <barndtcogeco (DOT) <mailto:barndt% 40cogeco. ca> ca>

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

Sent: Friday, March 6, 2009 7:24:01 AM

Subject: [ ] Switch to Nilotinib or take a drug hiatus?

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but

could not tolerate it and was switched to Sprycel which I have been

tolerating fairly well for a year and a half. My liver counts were up for

several years, but only mildly and consistent. However, on Wednesday my

bloodwork showed that they skyrocketed. ast 116, alt 122, ggt 333. Normal

counts are <35, 0-28,0-32 respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib

is known to be harder on the liver. He said that twice. I had other

thoughts, and suggested I go off all pain killers, anti-inflamatories( I

have been on diclofenic for years for chronic back issues, they are heavy

duty) and go on a liver healthy diet. He agreed.. He is ordering a liver

biopsy and I will see him again in two weeks to discuss the results and the

next steps. This is going to be hard for me as I am a chronic pain sufferer,

but it seems to me that pain is not life-threatening, liver disease and CML

are.

I am loathe to switch to Nilotinib only to find it is harder on the liver.

Also, I have already ruled out gleevec as an option for me and I am not

ready to give up on sprycel. My current thinking is if the reduction of

other prescription drugs as well as diet change is not going to correct the

liver problem I would like to try going off the sprycel until my liver heals

then go back on it again.

I have heard of people going off gleevec for periods of time for certain

health issues as well as for pregnancy with great results, but I have not

heard of anyone doing the same with sprycel. Does anyone have an experience

or knowledge that can help me to discern what my next best steps are?

Thank you

[Guest guest]

Please get a new doc who will help you find the right dose for quality of life

and good results. Staying off the meds is only a very short term 'feel good'

and certainly many of us dream of being off the meds, but please don't 'give

yourself a vacation'. Work with your doc to find a good effective dose and

manage the side effects.

No medicine is side effect free, but get a second, or third, opinion about your

vacation idea.

Please.

Thanks for keeping us a part of your journey.

Best wishes,

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] Switch to Nilotinib or take a drug hiatus?

Hi.

I haven't posted for a year or more. I was on gleevec for 6 months, but

could not tolerate it and was switched to Sprycel which I have been

tolerating fairly well for a year and a half. My liver counts were up for

several years, but only mildly and consistent. However, on Wednesday my

bloodwork showed that they skyrocketed. ast 116, alt 122, ggt 333. Normal

counts are <35, 0-28,0-32 respectively.

I was given the impression that my doctor was kind of panicking about it. He

immediately wanted me to switch to Nilotinib, however he said that Nilotinib

is known to be harder on the liver. He said that twice. I had other

thoughts, and suggested I go off all pain killers, anti-inflamatories( I

have been on diclofenic for years for chronic back issues, they are heavy

duty) and go on a liver healthy diet. He agreed.. He is ordering a liver

biopsy and I will see him again in two weeks to discuss the results and the

next steps. This is going to be hard for me as I am a chronic pain sufferer,

but it seems to me that pain is not life-threatening, liver disease and CML

are.

I am loathe to switch to Nilotinib only to find it is harder on the liver.

Also, I have already ruled out gleevec as an option for me and I am not

ready to give up on sprycel. My current thinking is if the reduction of

other prescription drugs as well as diet change is not going to correct the

liver problem I would like to try going off the sprycel until my liver heals

then go back on it again.

I have heard of people going off gleevec for periods of time for certain

health issues as well as for pregnancy with great results, but I have not

heard of anyone doing the same with sprycel. Does anyone have an experience

or knowledge that can help me to discern what my next best steps are?

Thank you