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Hi Avis,

I have been on Tasigna for 10 months now and fortunately never had any

problems with my counts or with Glivec either. Certainly my QOL is far

superior on Tasigna.

How old is your cousin? That sounds awful re the chemical damage from the

Aranesp? Women certainly have had problems with Glivec causing havoc with

periods - is this what you mean by internal bleeding or from the bowel? I'm

not sure re Tasigna. I only know one younger woman and she had problems when

on Glivec, but she has not improved on Tasigna either and her RBC are

constantly low.

Regards,

From: [mailto: ] On Behalf Of

avisallen@...

Sent: Thursday, 18 June 2009 6:03 AM

Subject: [ ] Tasigna

Hi, all - Cousin Dona has another question. I notice there seems to be

some agreement among Tasigna users that previous Gleevec side effects

have

lessened. She wonders whether there has been an improved red blood

count.

Guess she means hemoglobin and hemacrit. She still has no balance from

(she thinks) an Aranesp shot. Because her red counts go down so fast,

she has

had to have a couple more. Blood stays

at about 9. Possibility of internal bleeding

has been examined. She has had a series of therapy sessions addressing

balance, but the consensus seems to be

some chemical damage was done to the

brain so therapy is useless.

Thank you in advance,

Avis (Hertz Nurtle)

Dona - dx Dec. 2000

Gleevec trial MDACC 4/01 to present

(various dosage)

Zavie's list #141

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I had that shaking thing with Gleevec! It was very conspicuous in my right hand

and foot and it was a bit embarrassing. At first I was afraid I had Parkinson's.

Turns out I didn't. The neurologist put me on Neurontin which ended the shakes,

but also made me verrry sleepy. Gleevec + Neurontin = Out Cold All the Time. So

I thought, I'll just make my peace with the shakes and forgo the Neurontin. The

shakes never came back, though.

From: bheath@...

Date: Wed, 15 Jul 2009 21:39:17 -0400

Subject: [ ] Tasigna

Hi All. It's great to see all the discussion on Tasigna.

After

being on Gleevec for many years - with many side effects - I do think that

no matter what we all switch to - we still will have to deal with various

side effects. : -( Doesn't seem fair. It is a chemo after all.

My biggest concern with the Tasigna now is extreme fatigue - and constant

" shakes " . I recall the extreme fatigue when I started on Gleevec and am

again experiencing it as I start Tasigna. (After work, I pull my car into

the garage and shut the door - and recline my car seat to just nap and get

some strength to carry my purse and backpack into the house!) (Is that not

pathetic?) I recall doing the SAME thing when I was initially on Gleevec

too.

The shakiness is something totally foreign to me. My whole body feels

" quivery " all over inside and out - and my hands are physically trembling.

I did not have this on Gleevec. I've also found that I am having more

intense nausea on this new drug. Hopefully this will all abate. It's

certainly comforting knowing we all have options for our CML - which is a

real blessing.

I remember a dear friend who was on the ACOR BMT list - some of you may

remember her - Debi Hoegler . . . She was a one of a kind breath of fresh

air and unfortunately had her lymphoma return and passed away. Her

favorite saying was 'When the train leaves the station - hop onboard and go

for the ride' Glad we are all here to share the ride together.

Thanks friends!

Most sincerely,

Barbara Heathcote

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Thanks for sharing that Barbara. I was just complaining because my wbc won't go

down and stay down, it's like a yo yo. After reading this, I feel very lucky

that I am still able to fight this battle. I will win it too!!! I am so sorry to

hear about your friend that lost her life to this stuff. I am also sorry that

you are having to work and deal with this too. You are more of a woman than I am

honey cause I do good to get up and do housework a little at a time. There is no

way I could hold a job right now. So, my hat is off to you!!!

BLessings,

From: Barbara Heathcote <bheath@...>

Subject: [ ] Tasigna

Date: Thursday, July 16, 2009, 1:39 AM

 

Hi All. It's great to see all the discussion on Tasigna. After

being on Gleevec for many years - with many side effects - I do think that

no matter what we all switch to - we still will have to deal with various

side effects. : -( Doesn't seem fair. It is a chemo after all.

My biggest concern with the Tasigna now is extreme fatigue - and constant

" shakes " . I recall the extreme fatigue when I started on Gleevec and am

again experiencing it as I start Tasigna. (After work, I pull my car into

the garage and shut the door - and recline my car seat to just nap and get

some strength to carry my purse and backpack into the house!) (Is that not

pathetic?) I recall doing the SAME thing when I was initially on Gleevec

too.

The shakiness is something totally foreign to me. My whole body feels

" quivery " all over inside and out - and my hands are physically trembling.

I did not have this on Gleevec. I've also found that I am having more

intense nausea on this new drug. Hopefully this will all abate. It's

certainly comforting knowing we all have options for our CML - which is a

real blessing.

I remember a dear friend who was on the ACOR BMT list - some of you may

remember her - Debi Hoegler . . . She was a one of a kind breath of fresh

air and unfortunately had her lymphoma return and passed away. Her

favorite saying was 'When the train leaves the station - hop onboard and go

for the ride' Glad we are all here to share the ride together.

Thanks friends!

Most sincerely,

Barbara Heathcote

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Hi Barbara,

It is truly amazing how we all fare differently with our drugs. I had never

heard of the 'shakes' with Tasigna. With the shakes, have you tried

magnesium to see if this may be causing them? We can get quite low levels

and this can cause muscle tremors and spasms. It certainly won't hurt you

take them - I take 3 in the morning and evening.

I hope you feel better soon.

Regards,

From: [mailto: ] On Behalf Of

Barbara Heathcote

Sent: Thursday, 16 July 2009 11:39 AM

Subject: [ ] Tasigna

Hi All. It's great to see all the discussion on Tasigna. After

being on Gleevec for many years - with many side effects - I do think that

no matter what we all switch to - we still will have to deal with various

side effects. : -( Doesn't seem fair. It is a chemo after all.

My biggest concern with the Tasigna now is extreme fatigue - and constant

" shakes " . I recall the extreme fatigue when I started on Gleevec and am

again experiencing it as I start Tasigna. (After work, I pull my car into

the garage and shut the door - and recline my car seat to just nap and get

some strength to carry my purse and backpack into the house!) (Is that not

pathetic?) I recall doing the SAME thing when I was initially on Gleevec

too.

The shakiness is something totally foreign to me. My whole body feels

" quivery " all over inside and out - and my hands are physically trembling.

I did not have this on Gleevec. I've also found that I am having more

intense nausea on this new drug. Hopefully this will all abate. It's

certainly comforting knowing we all have options for our CML - which is a

real blessing.

I remember a dear friend who was on the ACOR BMT list - some of you may

remember her - Debi Hoegler . . . She was a one of a kind breath of fresh

air and unfortunately had her lymphoma return and passed away. Her

favorite saying was 'When the train leaves the station - hop onboard and go

for the ride' Glad we are all here to share the ride together.

Thanks friends!

Most sincerely,

Barbara Heathcote

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I will be starting on Tasigna two times day on Thursday. Gleevec from March 09

to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with

explosive headache, even worse GI issues and couldn't get out of bed it has

taken me a week to recover so I am hoping Tasigna is the one. My doctors nurse

didn't give me a lot of info. What can you guys tell me as far as side effect

that could happen? Or positive feedback with Tasigna vs Gleevec and Spycel?

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Hi Debbie - I had terrible migraines on Glivec, so when I started on Tasigna

it was like I was on nothing at all! I still get tired at times (probably

cos I try to do too much, or maybe just a CML thing), but Tasi has been a

good swap in terms of side effects.

The hardest issue is getting the fasting time right - I take it around 6.30

-7am and then breakie 1 hour after and in the evening, fast from 4-4.30pm

and take 6-6.30pm and then food 1 hour afterwards. You need to make sure you

adhere to the fasting rule as food increases the absorption of Tasigna,

which could potentially cause side effects. During the fasting period you

can only drink water.

Tasigna is known to increase the QT complex in the heart rhythm, therefore

you should have an ECG (EKG) prior to taking Tasigna and then a week or so

after commencement to ensure you don't have any problems.

Regards,

Rodorbal Labradors Australia

www.rodorbal.com

http://au./group/Ozlabradors/

www.labradata.org

From: [mailto: ] On Behalf Of Debbie

Segars

Sent: Tuesday, 4 August 2009 12:16 PM

Subject: [ ] Tasigna

I will be starting on Tasigna two times day on Thursday. Gleevec from March

09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with

explosive headache, even worse GI issues and couldn't get out of bed it has

taken me a week to recover so I am hoping Tasigna is the one. My doctors

nurse didn't give me a lot of info. What can you guys tell me as far as side

effect that could happen? Or positive feedback with Tasigna vs Gleevec and

Spycel?

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Debbie. I went through all o that with Gleevec and Sprycel too. Nothing with

Tasigna.

Good luck and let us know

Sharon T

_____

From: [mailto: ] On Behalf Of Debbie

Segars

Sent: Monday, August 03, 2009 7:16 PM

Subject: [ ] Tasigna

I will be starting on Tasigna two times day on Thursday. Gleevec from March

09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with

explosive headache, even worse GI issues and couldn't get out of bed it has

taken me a week to recover so I am hoping Tasigna is the one. My doctors

nurse didn't give me a lot of info. What can you guys tell me as far as side

effect that could happen? Or positive feedback with Tasigna vs Gleevec and

Spycel?

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EkG, ECG ( I think they are the same) are a must when you start Tasigna. I

had them all the time. Now I have them every three months.

Ask the Dr. about them.

Sharon T

_____

From: [mailto: ] On Behalf Of Debbie

Segars

Sent: Monday, August 03, 2009 7:40 PM

Subject: RE: [ ] Tasigna

Okay so fast for two hours take the med and wait another hour then eat. The

nurse didn't say anything about an ECG. She did ask me if I had heart

problems and I told her no but they run in my family. I am due to start

taking it on Thursday. I am working in Boston right now and my Onc is in

Georgia (I travel with my job full time) but they didn't schedule me for an

ECG.... What is QT Complex?

[

[The entire original message is not included]

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I'm a night owl too Sharon, but you have to remember that breaky is the best

meal of the day (or should be) and is one reason that contributes to weight

gain LOL. I have been an indifferent breakfast eater over the years, but now

always eat 2 weetbix and low fat fruit yoghurt and am doing much better

weightloss wise. I used to have a diet shake but a lot of these can be hard

on the liver, so I only have them occasionally now. Sundays at our household

is always brunch with grilled bacon, tomatoes and poached eggs.

That's the other issue with Tasigna - it ideally should be taken 12 hours

apart, but no less than 8 hours.

Regards,

From: [mailto: ] On Behalf Of

onthewtr@...

Sent: Tuesday, 4 August 2009 2:07 PM

Subject: Re: [ ] Tasigna

Tasagna has been so good to me. I get up abt 7am have coffee or breakfast. I

am not a breakfast eater. Take 200mg at abt 10 thirty, then. Eat abt

noonish. Then I can do or eat what I want till abt 8 thirty go to bed at 11

thirty I am a night person and read till then take my pill and go 2 sleep.

Lots of wtr

That works for me.

Sharon T

Sent via BlackBerry by AT & T

[ ] Tasigna

I will be starting on Tasigna two times day on Thursday. Gleevec from March

09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with

explosive headache, even worse GI issues and couldn't get out of bed it has

taken me a week to recover so I am hoping Tasigna is the one. My doctors

nurse didn't give me a lot of info. What can you guys tell me as far as side

effect that could happen? Or positive feedback with Tasigna vs Gleevec and

Spycel?

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I have been on Tasigna for two years

and I have found that most of my GI

issues I had on Gleevec, but like any

type of drug or chemotherapy you

have to watch a few things.

First make sure you follow the directions

on not eating two hours before and one

hour after. Also try and increase your

water intake as Tasigna can cause

constipation. You may still notice

some fatigue and limited bone

pain, but most of your GI issues

should disappear.

It is also wise to limit your salt

intake and watch your blood

pressure as sometimes it

can cause an increase. Other

than that, read your pamphlets

Follow the doctors I structions.

Have you done your EKG yet?

Matt

Florida

Sent from my iPhone

On Aug 3, 2009, at 10:16 PM, Debbie Segars <segersdebbie@...>

wrote:

> I will be starting on Tasigna two times day on Thursday. Gleevec

> from March 09 to July 09 with major GI issues and extreme fatigue.

> Sprycel 3 days with explosive headache, even worse GI issues and

> couldn't get out of bed it has taken me a week to recover so I am

> hoping Tasigna is the one. My doctors nurse didn't give me a lot of

> info. What can you guys tell me as far as side effect that could

> happen? Or positive feedback with Tasigna vs Gleevec and Spycel?

>

>

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It is QT Prolongation.

Matt

Florida

Sent from my iPhone

On Aug 3, 2009, at 10:40 PM, Debbie Segars <segersdebbie@...>

wrote:

> Okay so fast for two hours take the med and wait another hour then

> eat. The nurse didn't say anything about an ECG. She did ask me if I

> had heart problems and I told her no but they run in my family. I am

> due to start taking it on Thursday. I am working in Boston right

> now and my Onc is in Georgia (I travel with my job full time) but

> they didn't schedule me for an ECG.... What is QT Complex?

>

> [

>

> [The entire original message is not included]

>

>

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Wise moves on your part!

From: segersdebbie@...

Date: Tue, 4 Aug 2009 14:21:20 -0400

Subject: [ ] Tasigna

Just to give you all an update I contacted an oncologist here

in Boston that is suppose to be very good. His name is Dr . He

was previously at Beth Israel i New York. He has agrred to fit me in on Monday

at 3:00 for a new patient appointment. It really frightens me that my

oncologist in GA was going to star me on this drug without benefit of an EKG and

had not planned to see me again until November. So time for a change. I will

not start my new med until after I see the new doctor. Thanks everyone.. I will

keep you all up to date.

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