RE: tasigna - pegasus for CML

[Guest guest]

I was on Gleevec and had to stop because of terrible side effects. then went

to sprycel and not much better but a little. then got plural effusion and

had to stop that and went on Tasigna exactly three years ago. I have hardly

any side effects to speak of. Honestly I am and have been back to my normal

self. Everyone is different and tolerates medicine differently. I wish you

all the luck.

I take 600mg a day. 400 at night and 200 in the morning.

Don't know what Pagasus is? Tell me.

Sharon

_____

From: [mailto: ] On Behalf Of

Annette Livingston

Sent: Monday, March 21, 2011 7:31 AM

Subject: [ ] tasigna - pegasus for CML

I am in need of some info.I was on Gleevec for years and will not take it

any more because of side effects. So tell me about this sudden death thing

with Tasigna.how often? How is it tolerated compared to Gleevec?

Also, has anyone ever done pegasus for CML? What was your experience with

that one?

Please respond. Annette Livingston CML with MF. 68 yrs old .. dxed CML 08

and MF 11/98

Annette Livingston

[Guest guest]

Annette, I can appreciate your feelings 100 percent! I thought I would try

anything to get away from Gleevec, but I must say I paused when I began

reading about Tasigna.

But doctors now know they need to screen patients first for certain heart

problems before starting them on Tasigna. Your doc will have you take a

baseline EKG, then follow-up EKGs during the first months of your treatment,

which is when this prolonged QT syndrome has occurred. Some people continue

the EKGs throughout treatment.

Also, they have learned that you have to take Tasigna on an empty stomach. I

was pretty nervous about Tasigna before starting it, but that empty stomach

business proved the most difficult thing to work out! I take on dose during

the early morning hours -- anywhere from 2 to 5 a.m. That's easy. But late

afternoon is trickier. Especially at the beginning I would forget, taste a

little of what I was cooking then, kaboom. I'd have to start the clock all

over again.

But it's important because the problems occurred when people took Tasigna

while digesting food.

My quality of life improved 100 percent when I began Tasigna.Plus I am not

at PCRU, which I never was on either Gleevec or Sprycel (better than

Gleevec, but not as good as Tasigna IMHO). I am so grateful for it!

Best,

in San Francisco

59 years old, dx 2005

On Mon, Mar 21, 2011 at 7:30 AM, Annette Livingston <

thoughtsfromannette@...> wrote:

>

>

> I am in need of some info.I was on Gleevec for years and will not take it

> any more because of side effects. So tell me about this sudden death thing

> with Tasigna.how often? How is it tolerated compared to Gleevec?

>

> Also, has anyone ever done pegasus for CML? What was your experience with

> that one?

>

> Please respond. Annette Livingston CML with MF. 68 yrs old .. dxed CML 08

> and MF 11/98

>

> Annette Livingston

>

>

[Guest guest]

I have been on Tasigna for 3 years and I still get an EKG every 5 months. I

have been fine there. And I do not see a problem with taking the meds on an

empty stomach. I take one in the morning about 10 after my coffee and

breakfast (two hours after eating) then I can eat all day after that (after

an hour) then I just stop eating at 8pm and take my 400mg at bedtime. I

find that works very well for me. I get my blood work done every two months

and my PCR done every 6 months. Have been PCRU for over three years.

Hi of San Francisco. You are the only person I know of that is even

close to where I live. I live in Discovery Bay. I think we may have chatted

before. I am 68 and dx in 2004

Sharon

Re: [ ] tasigna - pegasus for CML

Annette, I can appreciate your feelings 100 percent! I thought I would try

anything to get away from Gleevec, but I must say I paused when I began

reading about Tasigna.

But doctors now know they need to screen patients first for certain heart

problems before starting them on Tasigna. Your doc will have you take a

baseline EKG, then follow-up EKGs during the first months of your treatment,

which is when this prolonged QT syndrome has occurred. Some people continue

the EKGs throughout treatment.

Also, they have learned that you have to take Tasigna on an empty stomach. I

was pretty nervous about Tasigna before starting it, but that empty stomach

business proved the most difficult thing to work out! I take on dose during

the early morning hours -- anywhere from 2 to 5 a.m. That's easy. But late

afternoon is trickier. Especially at the beginning I would forget, taste a

little of what I was cooking then, kaboom. I'd have to start the clock all

over again.

But it's important because the problems occurred when people took Tasigna

while digesting food.

My quality of life improved 100 percent when I began Tasigna.Plus I am not

at PCRU, which I never was on either Gleevec or Sprycel (better than

Gleevec, but not as good as Tasigna IMHO). I am so grateful for it!

Best,

in San Francisco

59 years old, dx 2005

On Mon, Mar 21, 2011 at 7:30 AM, Annette Livingston <

thoughtsfromannette@...> wrote:

>

>

> I am in need of some info.I was on Gleevec for years and will not take

> it any more because of side effects. So tell me about this sudden

> death thing with Tasigna.how often? How is it tolerated compared to

Gleevec?

>

> Also, has anyone ever done pegasus for CML? What was your experience

> with that one?

>

> Please respond. Annette Livingston CML with MF. 68 yrs old .. dxed CML

> 08 and MF 11/98

>

> Annette Livingston

>

>

[Guest guest]

Annette - I was on Gleevec from dx in 9/07 - 6/10. Between 3/10 and 6/10 I

was also on Pegasys. Gleevec had side effects - but I was going to try the

study with the Pegasys to " cure " . I was sick on the Pegasys, willing to put

up with it for a year to see if it worked. In June, I had to have my Gall

Bladder removed. Unsure of why - they took me off the Pegasys and Gleevec.

And I went to Tasigna. MUCH easier to handle side effect wise. My bone pain,

especially in the hips is worse, but everything else is better.

Tammy

From: Annette Livingston [mailto:thoughtsfromannette@...]

Sent: Monday, March 21, 2011 10:31 AM

Subject: [ ] tasigna - pegasus for CML

I am in need of some info.I was on Gleevec for years and will not take it

any more because of side effects. So tell me about this sudden death thing

with Tasigna.how often? How is it tolerated compared to Gleevec?

Also, has anyone ever done pegasus for CML? What was your experience with

that one?

Please respond. Annette Livingston CML with MF. 68 yrs old .. dxed CML 08

and MF 11/98

Annette Livingston