Tasigna

[Guest guest]

My pleasure and good luck!

Regards,

 

 

 

Re: [ ] Tasigna

> >

> > I'm hearing that same thing, that they think it will soon replace

> Gleevec!

> >

> > You know, I had no idea that they were required to post a warning no

> matter

> > how few people suffered a given side effect. That makes me feel better.

> >

> > In this brochure, they list intracranial hemorrhage as one of the

adverse

> > reactions. That's no joke! And then the febrile neutropenia, leukopenia,

> > pyrexia, pneumonia and then the QT prolongation. Well, it scared me out

> of

> > my wits.

> >

> > Then here's the other thing. They say, " There have been deaths. " Well,

> how

> > many out of how many? If it's three out of 10,000, no big deal. But if

> it's

> > 5 out of 100, that's really something to think about.

> >

> > I have to admit, I've heard from many " satisfied customers, " and I

> haven't

> > heard of anyone who got into real trouble on Tasigna.

> >

> > I'm especially nervous because for the time being, I am going to the

> clinic

> > at the county hospital for care. The people there are tops. But the

> > emergency room is dreadful. I took a young friend there one night when

> she

> > hurt her head -- there were people on gurneys, people in all states of

> > disrepair and there was only one doctor on duty.It seemed like everyone

> had

> > been waiting for hours. I heard a guy complaining that he and his wife

> had

> > been waiting since the afternoon and they hadn't even seen a nurse.

> > Ambulances were bringing in people with gunshot wounds and the like. So

I

> > figure if something bad happens, I'll have better luck saying my prayers

> > than going to the hospital!

> >

> > Also, what with the cutbacks in California, they cut two of my doctor's

> > clinic fellow positions, so now it's just him and one fellow seeing all

> > these patients. I'm supposed to get an EKG, have my labs drawn, and

start

> > taking Tasigna, then see him in seven days -- except that they don't

have

> > an

> > opening for three weeks.

> >

> > Maybe once I'm past the initial stage I won't sweat it so much.

> >

> > Thanks for your pep talk, Lottie -- you are always a source of strength

> and

> > calm. Bless you for it.

> >

> >

> >

> > On Wed, Mar 24, 2010 at 3:45 PM, Lottie Duthu

> <lotajam@... <lotajam%40comcast.net><lotajam%40comcast.net>>

>

> > wrote:

> >

> > >

> > >

> > > Dear .

> > > What scared you so much? Would you share the contents of that message

> > from

> > > Novartis about Tasigna? It doesn't mean that it will happen, it just

> > means

> > > that it happened to at least one person and I think of all the

patients

> > who

> > > are raving about it.

> > >

> > > That reminds me of when I went to get a back procedure while Jimmy was

> in

> > > the hospital. The last item on the list of possible occurences was

> > " death " .

> > > I was a basket case, staying in the hospital 24/7 for over a week and

> > when

> > I

> > > saw that, I couldn't sign the consesnt form. I walked off. Later after

> I

> > had

> > > time to re-think it and felt better, I did go back. That doctor was so

> > nice,

> > > when he found out I was having surgery, he came to visit me in the

> > hospital,

> > > still kidding me about my refusal and in not trusting him.

> > >

> > > Think about it for a while and I'm sure you will put your misgivings

> > aside

> > > once you have talked to others. The doctors are telling me that it

will

> > soon

> > > replace Gleevec as first line of defense against CML. That's pretty

> high

> > > praise coming from a pretty broad base of doctors. I hope it all comes

> > " out

> > > in the wash " .

> > >

> > > Hands & hearts,

> > > Lottie

> > >

> > >

[Guest guest]

Thank you so much and Rebbeca for Tasigna update I can't wait to loose

gleevec weight when I switch. ,would you be still tired or have saMe

fatigue as Gleevec?

Tadros

Sent from my Verizon Wireless BlackBerry

Re: [ ] Tasigna

> >

> > I'm hearing that same thing, that they think it will soon replace

> Gleevec!

> >

> > You know, I had no idea that they were required to post a warning no

> matter

> > how few people suffered a given side effect. That makes me feel better.

> >

> > In this brochure, they list intracranial hemorrhage as one of the adverse

> > reactions. That's no joke! And then the febrile neutropenia, leukopenia,

> > pyrexia, pneumonia and then the QT prolongation. Well, it scared me out

> of

> > my wits.

> >

> > Then here's the other thing. They say, " There have been deaths. " Well,

> how

> > many out of how many? If it's three out of 10,000, no big deal. But if

> it's

> > 5 out of 100, that's really something to think about.

> >

> > I have to admit, I've heard from many " satisfied customers, " and I

> haven't

> > heard of anyone who got into real trouble on Tasigna.

> >

> > I'm especially nervous because for the time being, I am going to the

> clinic

> > at the county hospital for care. The people there are tops. But the

> > emergency room is dreadful. I took a young friend there one night when

> she

> > hurt her head -- there were people on gurneys, people in all states of

> > disrepair and there was only one doctor on duty.It seemed like everyone

> had

> > been waiting for hours. I heard a guy complaining that he and his wife

> had

> > been waiting since the afternoon and they hadn't even seen a nurse.

> > Ambulances were bringing in people with gunshot wounds and the like. So I

> > figure if something bad happens, I'll have better luck saying my prayers

> > than going to the hospital!

> >

> > Also, what with the cutbacks in California, they cut two of my doctor's

> > clinic fellow positions, so now it's just him and one fellow seeing all

> > these patients. I'm supposed to get an EKG, have my labs drawn, and start

> > taking Tasigna, then see him in seven days -- except that they don't have

> > an

> > opening for three weeks.

> >

> > Maybe once I'm past the initial stage I won't sweat it so much.

> >

> > Thanks for your pep talk, Lottie -- you are always a source of strength

> and

> > calm. Bless you for it.

> >

> >

> >

> > On Wed, Mar 24, 2010 at 3:45 PM, Lottie Duthu

> <lotajam@... <lotajam%40comcast.net><lotajam%40comcast.net>>

>

> > wrote:

> >

> > >

> > >

> > > Dear .

> > > What scared you so much? Would you share the contents of that message

> > from

> > > Novartis about Tasigna? It doesn't mean that it will happen, it just

> > means

> > > that it happened to at least one person and I think of all the patients

> > who

> > > are raving about it.

> > >

> > > That reminds me of when I went to get a back procedure while Jimmy was

> in

> > > the hospital. The last item on the list of possible occurences was

> > " death " .

> > > I was a basket case, staying in the hospital 24/7 for over a week and

> > when

> > I

> > > saw that, I couldn't sign the consesnt form. I walked off. Later after

> I

> > had

> > > time to re-think it and felt better, I did go back. That doctor was so

> > nice,

> > > when he found out I was having surgery, he came to visit me in the

> > hospital,

> > > still kidding me about my refusal and in not trusting him.

> > >

> > > Think about it for a while and I'm sure you will put your misgivings

> > aside

> > > once you have talked to others. The doctors are telling me that it will

> > soon

> > > replace Gleevec as first line of defense against CML. That's pretty

> high

> > > praise coming from a pretty broad base of doctors. I hope it all comes

> > " out

> > > in the wash " .

> > >

> > > Hands & hearts,

> > > Lottie

> > >

> > >

[Guest guest]

,

I have been on Tasigna for two years now. When I first started it they

started me on 400mg. I did not quite hit PCRU .0075 so they jumped me to

600mg after three weeks. ( I personally think they were a little anxious and

I would have gotten PCRU if I remained at 400mg but whos to know) Anyway

after three weeks on 600mg I became pcru with a 5 log reduction It was

amazing.

And I have remained PCRU ever since.

I am one of the lucky ones that have no side effects from Tasigna like I

had on Gleevec and Sprycel.

You are like me -I MUST have my coffee as soon as I get up so I do this.-I

get up about 7am. I make and have at least 2 cups of coffee then at about

8:30 my husband and I " Juice " in our juicer. Then at about 11:30 I take one

pill. Then I wait and eat my lunch later. Then I have all day to eat if I

want to. I then take my 2 pills (400mg) at 11:30.pm But I stay up late-we

go to bed at about 11-11:30 and I usually read till 12. so that works

perfect for me. But you must realize that I do alternative things too-

depending on my schedule. I have been known to take my pill early in the

morning and waiting and also taking them earlier at night. Depending on

where and what I am doing. Just space them out 10 to 12 hours apart.

Just be sure that you have your EKG's done to check your QTc

Also when I first started taking the Tasigna I will never forget I was so

afraid of what was going to happen. I stayed home and did not do much but

wait around for something to happen. Nothing did. I am sorry you are

having those side affects. I am sure in time they will go away. I had those

on Gleevec and Sprycel.

Good luck!

Sharon T

_____

From: [mailto: ] On Behalf Of

Rosen Lum

Sent: Monday, April 19, 2010 9:50 AM

Subject: [ ] Tasigna

Those of you on Tasigna, I have a question. Tomorrow I will have been taking

Tasigna at a half-dose for a week. I am supposed to get onto the full dose

of 400 mg. twice a da Wednesday. I've been pretty nervous this week, putting

a " moat " of two and three hours before and after each dose " just in case. " I

guess I will become more relaxed about it over time.

When do you all take your doses? I'm a wreck if I don't have my coffee first

thing in the morning. I end up taking my first dose some time between 11

a.m. and noon. Then of course I end up staying up later than I otherwise

might to take that night time dose.

Headache, diarrhea, frequent urination, queasiness -- does any of that sound

familiar? Yesterday I drove out of the city and took a short walk in the

country with some folks. I came home and slept for three hours! What a wuss!

Does this stuff pass with time?

Thanks a million you dears.

in S.F.

[Guest guest]

THANK YOU!

GOSH that's helpful.

On Mon, Apr 19, 2010 at 10:11 AM, Sharon Teichera <onthewtr@...>wrote:

>

>

> ,

>

> I have been on Tasigna for two years now. When I first started it they

> started me on 400mg. I did not quite hit PCRU .0075 so they jumped me to

> 600mg after three weeks. ( I personally think they were a little anxious

> and

> I would have gotten PCRU if I remained at 400mg but whos to know) Anyway

> after three weeks on 600mg I became pcru with a 5 log reduction It was

> amazing.

>

> And I have remained PCRU ever since.

>

> I am one of the lucky ones that have no side effects from Tasigna like I

> had on Gleevec and Sprycel.

>

> You are like me -I MUST have my coffee as soon as I get up so I do this.-I

> get up about 7am. I make and have at least 2 cups of coffee then at about

> 8:30 my husband and I " Juice " in our juicer. Then at about 11:30 I take one

> pill. Then I wait and eat my lunch later. Then I have all day to eat if I

> want to. I then take my 2 pills (400mg) at 11:30.pm But I stay up late-we

> go to bed at about 11-11:30 and I usually read till 12. so that works

> perfect for me. But you must realize that I do alternative things too-

> depending on my schedule. I have been known to take my pill early in the

> morning and waiting and also taking them earlier at night. Depending on

> where and what I am doing. Just space them out 10 to 12 hours apart.

>

> Just be sure that you have your EKG's done to check your QTc

>

> Also when I first started taking the Tasigna I will never forget I was so

> afraid of what was going to happen. I stayed home and did not do much but

> wait around for something to happen. Nothing did. I am sorry you are

> having those side affects. I am sure in time they will go away. I had those

> on Gleevec and Sprycel.

>

> Good luck!

>

> Sharon T

>

> _____

>

> From: <%40> [mailto:

> <%40>] On Behalf Of

> Rosen Lum

> Sent: Monday, April 19, 2010 9:50 AM

> <%40>

> Subject: [ ] Tasigna

>

>

> Those of you on Tasigna, I have a question. Tomorrow I will have been

> taking

> Tasigna at a half-dose for a week. I am supposed to get onto the full dose

> of 400 mg. twice a da Wednesday. I've been pretty nervous this week,

> putting

> a " moat " of two and three hours before and after each dose " just in case. "

> I

> guess I will become more relaxed about it over time.

>

> When do you all take your doses? I'm a wreck if I don't have my coffee

> first

> thing in the morning. I end up taking my first dose some time between 11

> a.m. and noon. Then of course I end up staying up later than I otherwise

> might to take that night time dose.

>

> Headache, diarrhea, frequent urination, queasiness -- does any of that

> sound

> familiar? Yesterday I drove out of the city and took a short walk in the

> country with some folks. I came home and slept for three hours! What a

> wuss!

> Does this stuff pass with time?

>

> Thanks a million you dears.

> in S.F.

>

>

[Guest guest]

I have been on Tasigna for two years. I try to take it at 10 a.m. and 10

p.m. Sometimes I have breakfast or another coffee a little later than

usual which could bring me to 11 a.m. for my first dose. I still take the p.m.

dose around 10 p.m. I won't stay up later just to take the dose. It's ok

if it's not always 12 hours between. My dr. says 10 hrs. is ok, better

than falling asleep and missing the evening dose. The fast should be two

hours before and one hour after taking Tasigna. You don't need two hours

afterwards.

I feel great and have had good test results. I wish you the best!

in NY

[Guest guest]

Thank you, ! MUCH appreciated.

On Tue, Apr 20, 2010 at 5:49 AM, <nchando@...> wrote:

>

>

> I have been on Tasigna for two years. I try to take it at 10 a.m. and 10

> p.m. Sometimes I have breakfast or another coffee a little later than

> usual which could bring me to 11 a.m. for my first dose. I still take the

> p.m.

> dose around 10 p.m. I won't stay up later just to take the dose. It's ok

> if it's not always 12 hours between. My dr. says 10 hrs. is ok, better

> than falling asleep and missing the evening dose. The fast should be two

> hours before and one hour after taking Tasigna. You don't need two hours

> afterwards.

>

> I feel great and have had good test results. I wish you the best!

> in NY

>

>

[Guest guest]

Hi Donna,

After almost 7 yrs on Gleevec and never achieving PCRU, I switched to Tasigna in

Nov, 2008 after a 2 week 'vacation' from meds. Almost immediately, all of the

Gleevec side effects disappeared! I didn't experience any side effects from

Tasigna and my QOL has improved dramatically. And I achieved PCRU for the first

time last summer. In additon, my overall appearance has changed to a point that

people took notice. I lost 15 lbs, my coloring improved and the facial edema

that made slits of my eyes was gone.

Regarding the shin pain, I had that from time to time on Gleevec but never on

Tasigna. It should abate itself in time. This is truly a miracle drug. Best

of luck.

Regards,

rb

>

> Hi All,

> I am now on day 15 of Tasigna. (3 yrs on Gleevec and not quite PCRU, and

failing QOL)

>

> At first I thought it was affecting my legs as the bones in my feet and shins

hurt so much, I think this is subsiding. Did anyone else experience bone pain

in legs at first. The Dr has prescribed lortabs for this but I really dont want

to start taking them.

>

> I am holding out hope for a better QOL. I have already lost 10lbs.

>

> Regards Donna Berry

>

[Guest guest]

I've been on Tasigna now for a couple months, and the pain in my legs --

especially my shins -- can get pretty intense, although it's not always

there. I take ibuprofen for it.

I do find myself a bit queasier than I was on Gleevec, and I also get these

very rare dizzy spells. Small prices to pay, I say! In QOL there is no

comparison. Mornings I start out a little shaky, but that subsides and I'm

up all day and into the night!

in San Francisco

On Mon, Jun 14, 2010 at 5:52 AM, donnaberry99 <no_reply >wrote:

>

>

> Hi All,

> I am now on day 15 of Tasigna. (3 yrs on Gleevec and not quite PCRU, and

> failing QOL)

>

> At first I thought it was affecting my legs as the bones in my feet and

> shins hurt so much, I think this is subsiding. Did anyone else experience

> bone pain in legs at first. The Dr has prescribed lortabs for this but I

> really dont want to start taking them.

>

> I am holding out hope for a better QOL. I have already lost 10lbs.

>

> Regards Donna Berry

>

>

>

[Guest guest]

Hi ,Donna and rb,I can't wait to start Tasigna for better QOL. Thank you

all for your update

T

Dxd 2/2003

400 mg Gleevec

#764 zero club

Sent from my Verizon Wireless BlackBerry

Re: [ ] Tasigna

I've been on Tasigna now for a couple months, and the pain in my legs --

especially my shins -- can get pretty intense, although it's not always

there. I take ibuprofen for it.

I do find myself a bit queasier than I was on Gleevec, and I also get these

very rare dizzy spells. Small prices to pay, I say! In QOL there is no

comparison. Mornings I start out a little shaky, but that subsides and I'm

up all day and into the night!

in San Francisco

On Mon, Jun 14, 2010 at 5:52 AM, donnaberry99 <no_reply >wrote:

>

>

> Hi All,

> I am now on day 15 of Tasigna. (3 yrs on Gleevec and not quite PCRU, and

> failing QOL)

>

> At first I thought it was affecting my legs as the bones in my feet and

> shins hurt so much, I think this is subsiding. Did anyone else experience

> bone pain in legs at first. The Dr has prescribed lortabs for this but I

> really dont want to start taking them.

>

> I am holding out hope for a better QOL. I have already lost 10lbs.

>

> Regards Donna Berry

>

>

>