RE: tasigna, nilotinib ...would like to hear from anyone on this drug

February 18, 2011

There's a little more care given with prescribing Tasigna than Gleevec or

Sprycel. You'll have a baseline EKG to start with, and probably another a

week then a month into treatment, and after that not as often but regularly,

to make sure you are not prone to what they call prolonged QT syndrome, a

heart abnormality than can be fatal. Did I say that right, folks?

You have to take Tasigna on an empty stomach. You can't eat for two hours

before your dose, or one hour afterward. That is more challenging than I

thought it would be. I take one when I get up during the night -- usually

around 3 or 4 a.m. -- that's an easy one. Then I aim for late afternoon on

my second dose, but wow -- it's so easy to slip up. I'll be cooking, and

taste something as I'm cooking it, then kaboom. I've got to start counting

down that 2 hours all over again!

Having said that, I am more grateful for this drug than I can say! Tasigna

gave me a new life. All the things I couldn't do on Gleevec (like stay awake

all day) I can do on Tasigna. With Gleevec, I was sleepy all the time. Even

when I was awake, I wasn't " all there. " It was like being on some kind of

heavy narcotic. I fought a debilitating, global depression nearly every

minute. I'm grateful because it kept me alive. But Tasigna is the greatest.

I'm human again!

p.s. Have you or your doc considered trying Sprycel first?

On Fri, Feb 18, 2011 at 8:28 AM, Annette <thoughtsfromannette@...>wrote:

>

> I have been on Gleevic and was not happy with the side effects and now

> doctor wants me to try the tasigna. I would like to know how many are on

> this drug on this list and how you are doing with it.

>

February 18, 2011

i was on Gleevec for a year in 2004 and 2005- I had terrible side effects. A

rash that was all over my body that would not leave me. went on Sprycel - on

it for three years with several side effects then plural effusion. Then

three years ago went on Tasigna and have no side effects to speak of. I am a

new person and Tasigna has changed my life. I hardly even know I have CML

and I take 600mg. 2 at night and 1 in the AM.

Hopefully you will react to it as I do. I take no other medications for

anything. I am 68 years old with 14 grand children and I enjoy them a lot.

Good luck

Sharon

_____

From: [mailto: ] On Behalf Of

Annette

Sent: Friday, February 18, 2011 8:28 AM

Subject: [ ] tasigna, nilotinib ...would like to hear from anyone on

this drug

I have been on Gleevic and was not happy with the side effects and now

doctor wants me to try the tasigna. I would like to know how many are on

this drug on this list and how you are doing with it.

February 18, 2011

Hi,

I forgot to tell you that I have no problem with the taking of the

medication. This is what I do. In the morning I usually get up about 7am. I

have my coffee and then I have my breakfast. About 11 am I take my one pill

(200mg) then I wait and eat lunch about 12:30 or lpm. Then I am good all

day and evening. Before I go to bed (about 11pm) I take my other two pills

and it works for me. I have no problem taking them before bed. Some people

have problems. As long as I take a lot of water to be sure they go down. So

that is what I do and it works. Believe me occasionally I do forget or skip

a pill. Especially if we are out late and I have had something to eat after

8 or 9pm, or drink. But I have been PCRU on Tasigna for going on three years

this march.

I am very very happy with it. We still have to have all the blood work done

every two months, and the big PCR every 6 months and the EKG every 5 or 6

months. But it is a small price to pay to stay healthy. At least I do not

have to have any of those BMB anymore. They were terrible.

Take care and keep us posted on how well you do. You will do well!!!

Sharon again.

Re: [ ] tasigna, nilotinib ...would like to hear from anyone on