SKI606

[Guest guest]

Dear Doggie,

I was on SKI 606, the drug you refer to and it did have fewer side effects,

but only on a low dose for me. I had the worse rash I ever had and it hung on

for a long time. WE ARE ALL DIFFERENT. I did have pleural effusions with it,

but not everyone had the same problem. My pulmonologist wanted to do a

thorocentesis, but was afraid to because he didn't know anything about the

trial. He just never would call MDACC to ask if he should do it or what else he

could do.

I had a bladder infection every month with Gleevec for 4 years, but not

everyone has that problem, in fact, I never heard of anyone else getting it.

When I stopped it, I never had another infection, so what am I to conclude? We

just all have to try it personally before coming to any conclusions before we

can say it is successful or the wrong drug for us.

God bless everyone who is having a terrible time with side effects, they can be

debilitating, but if you want to stay alive then you have to learn to live with

it and try to minimize the side effects. That is why we write and ask others if

they have experienced the same thing. One thing that is most common is a rash

and itching. When I was on Tasigna, I never stopped itching all over my body,

but it never developed into a rash. I guess I wasn't on it long enough. Others

complained of the same thing, but that is something we can learn to live with,

like having a gnat landing on your nose. Sometimes sticking with the drug we

are on is the best answer for us, we don't know what the other drugs will do.

There are warning labels on the bottles, so we are not just taking aspirin,

these are powerful drugs that are meant to target the PH cells. Try playing

fliddle sticks, can you pick up those sticks without touching any others? That

is what the TKIs are like, but sometimes they do affect our other organs, such

as the liver or pancreas, they can't always be separated from one another.

Pray for doctors like Dr. Druker who spends his entire life doing research, he

is our guardian angel. As says, he spends as much time with you as you

need, so he is more than a doctor who looks at a number on your file. You are

an individual who deserves to be heard. Next to having a doctor, our group

is there to give us information to better help us through the rough patches.

It's like having a little league coach telling you how to hit the ball.

Sometimes you miss and then suddenly, you learn how to bat and make those home

runs. The home runs are the real benefits we get from the drugs and we take the

strikes along with the home runs. I am looking forward to having my own home

run. Everyone has something, whether they have CML or not and I think of people

with MS and some of those other diseases where you need assistance to breathe.

Some people are born with incurable diseases and never have a " normal " day in

their lives. I look to them for inspiration and give thanks for my blessings.

Carpe diem,

Lottie Duthu