Re: STI 571

[Guest guest]

[ ] STI 571

> Hi everyone--I haven't written in for awhile but have been reading the

list

> regularly. My husband is taking Cantron for lung cancer and we still

> await results. It has been a month. I am writing in about a news program I

> saw on NBC about STI 571, a new cancer treatment. Did anyone else see

this?

> Does anyone else have more information? It sounded pretty good!

> Thanks

> a

STI 571 is a tyrosine kinase inhibitor manufactured by CIBA. It seems to

have great effect on those with the Philadephia chromosome, ie, those with

chronic myelogenous leukemia.

[Guest guest]

Ahhh, the good old Interferon days.  Up every day, drive to the hospital, get

the shot, come home and wait for the chills, the fevers, the headaches, and 

the body aches to set in.  They lasted all day and by evening it  was time to

go to bed to get up and start all over again.  I took it for 9 weeks, then one

day told my doctor I would rather be dead than stay on Interferon. So on to

hydroxyurea for 5 years.  In those days we didn't have computers like today,

and there were no support groups.  But all that is history, Lottie, and we have

survived!  Yeahhhhhh!!!  GO CMLERS!!

a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995

Interferon/9 weeks/hydroxyurea/5 years

02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 -

Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club 09/2006 -  out of CCR 04/29/08 - XL228 trial/U

of Michigan

01/09/ - PCR 5.69

02/13/09 - XL228 trial ended due to side effects

o4/13/09 - Ariad Trial U of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial at U. of Michigan

09/09/09 - PCR 0.017

04/13/09 - Ariad trial, U. of Michigan

09/08/09 - PCR 0.017

From: Lottie Duthu <lotajam@...>

Subject: [ ] STI 571

" CML " < >

Date: Thursday, November 5, 2009, 4:23 PM

 

Dear Beverly,

I remember those days when the news broke on STI 571, we all scrambled to get

into that trial. All we heard was " no side effects " and that caught everyone's

notice. For a long time we didn't hear anything about side effects, true, we

were all glad that the first wave of CMLers to try it were all flourishing and

raving about their remissions, while the rest of us struggled on INF. I can't

say I regret having to go on INF, it kept me going until I could get Gleevec and

I know a lot of people who survived INF feel the same way.

It may also have paved the way for my longevity, even though I have never been

to CCR.

You brought back many memories and the spirit of gratitude.

We all have different perspectives and side effects, but the one common thread

is we all have CML or are a caregiver. As I ponder on the last 14 years, I know

that I have been lucky. I can loose sight of the fact that I am not where I

want to be, but I am not where I was. Knowledge and the support of a great

bunch of soldiers in the CML army brought me to this place of acceptance and

hope. Thanks a bunch.

Hands & hearts,

Lottie Duthu

[Guest guest]

Bobby, Lottie, and all CML " oldtimers, "

You are all so brave and inspiring, and my hat (does a knitted cap count?) goes

off to each and every one of you! It is absolutely amazing to hear some of the

things you all went through before Gleevec was available.

Sending hugs to all of our CML " oldtimers. "

JoAnn

>

> From: Lottie Duthu <lotajam@...>

> Subject: [ ] STI 571

> " CML " < >

> Date: Thursday, November 5, 2009, 4:23 PM

>

>

>

>

>

>

>

>  

>

>

>

>

>

>

>

>

>

> Dear Beverly,

>

>

>

> I remember those days when the news broke on STI 571, we all scrambled to get

into that trial. All we heard was " no side effects " and that caught everyone's

notice. For a long time we didn't hear anything about side effects, true, we

were all glad that the first wave of CMLers to try it were all flourishing and

raving about their remissions, while the rest of us struggled on INF. I can't

say I regret having to go on INF, it kept me going until I could get Gleevec and

I know a lot of people who survived INF feel the same way.

>

> It may also have paved the way for my longevity, even though I have never been

to CCR.

>

> You brought back many memories and the spirit of gratitude.

>

>

>

> We all have different perspectives and side effects, but the one common thread

is we all have CML or are a caregiver. As I ponder on the last 14 years, I know

that I have been lucky. I can loose sight of the fact that I am not where I

want to be, but I am not where I was. Knowledge and the support of a great

bunch of soldiers in the CML army brought me to this place of acceptance and

hope. Thanks a bunch.

>

> Hands & hearts,

>

> Lottie Duthu

>

>

>

>

[Guest guest]

>

> Ahhh, the good old Interferon days.  Up every day, drive to the hospital, get

the shot, come home and wait for the chills, the fevers, the headaches, and 

the body aches to set in.  They lasted all day and by evening it  was time to

go to bed to get up and start all over again.  I took it for 9 weeks, then one

day told my doctor I would rather be dead than stay on Interferon. So on to

hydroxyurea for 5 years.  In those days we didn't have computers like today,

and there were no support groups.  But all that is history, Lottie, and we have

survived!  Yeahhhhhh!!!  GO CMLERS!!

_______________

Hi Bobby and Lottie,

I have a story for you. I decided to give my CML the full attack. So I went to

MDACC and got in the triple therapy trial (inf, arac-c and HHT). Just a few

weeks before, on vacation in Maui, I broke my left wrist and was going to have a

cast on for 12 weeks! So, I had to give myself 2 shots, one-handed, every night.

I would wait until Jay Leno came on so I would have something to laugh about.

Then in the shower I had my through-the-chest catheter for the HHT and my cast

to keep dry......now try to wash your hair. The old days makes us all, I think,

so much more tolerant of anything that happens from taking a pill......so when

they said Gleevec had NO side effects, some of it was relatively speaking. One

of Dr. Druker's big goals was to have Gleevec in pill form instead of an

injection because he knew how much CMLers hated giving themselves shots

everyday. An injectible would have been easier....it was a challenge to get

Gleevec past the stomach.

C.

[Guest guest]

Hi to all the previous Interferon Users. I did not realize that people were not

giving themselves the shots of Interferon. I was an Interferon user back in

1998, and the nurse taught me how to give myself the shots, then they added

Ara-C shots every other week. The only relief I got was my weekends, and by the

time you started to feel good it was Monday again. Doing two different shots

for those certain weeks was horrible. Did anyone also do Ara-C? That is when I

had to stop working.

I could not even walk. It felt like my feet were in cement blocks, fever,

fatigue, etc. etc. We that used Interferon have come a long way. When someone

asks how I do it all these years, I just say that I am glad to be where I am and

not where I used to be. We are all very blessed in so many ways.

A

>

> >

>

> > Ahhh, the good old Interferon days.  Up every day, drive to the hospital,

get the shot, come home and wait for the chills, the fevers, the headaches,

and  the body aches to set in.  They lasted all day and by evening it 

was time to go to bed to get up and start all over again.  I took it for 9

weeks, then one day told my doctor I would rather be dead than stay on

Interferon. So on to hydroxyurea for 5 years.  In those days we didn't have

computers like today, and there were no support groups.  But all that is

history, Lottie, and we have survived!  Yeahhhhhh!!!  GO CMLERS!!

>

> ____________ ___

>

>

>

> Hi Bobby and Lottie,

>

> I have a story for you. I decided to give my CML the full attack. So I went to

MDACC and got in the triple therapy trial (inf, arac-c and HHT). Just a few

weeks before, on vacation in Maui, I broke my left wrist and was going to have a

cast on for 12 weeks! So, I had to give myself 2 shots, one-handed, every night.

I would wait until Jay Leno came on so I would have something to laugh about.

Then in the shower I had my through-the- chest catheter for the HHT and my cast

to keep dry......now try to wash your hair. The old days makes us all, I think,

so much more tolerant of anything that happens from taking a pill......so when

they said Gleevec had NO side effects, some of it was relatively speaking. One

of Dr. Druker's big goals was to have Gleevec in pill form instead of an

injection because he knew how much CMLers hated giving themselves shots

everyday. An injectible would have been easier....it was a challenge to get

Gleevec past the stomach.

>

> C.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>