Ariad trial

[Guest guest]

Hope you got my e-mail, ping me if not.

Hans

>

> On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and

will be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4

years but recently went on Sprycel which was not effective. Any others on this

trial to offer support and information? Thank you!

>

>

[Guest guest]

Hi ,

First of all, sorry to hear about the T315I diagnosis! However, there is

definitely hope! I am another Ariad-er and I'm doing great as well.

My experience with the drug has been overwhelmingly positive. I feel better than

I ever did on Gleevec--no cramping, fogginess, " gastric distress " , etc. Some

days I actually feel normal! I do have drier skin and some acne/rash and I do

get tired at times, but these are very tolerable! One caveat--when I started the

drug, after about 3 days, I had head to toe bone pain for about 72 hours and

then it went away (never to return). I was pretty miserable. This experience is

very rare and I only know of two others who experienced the same thing, so don't

think this will happen to you! (I just point it out for " full disclosure " ).

Good luck with the trial drug--I hope you have as good an experience as I have.

Beth

[ ] Ariad Trial

 

On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will

be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years

but recently went on Sprycel which was not effective. Any others on this trial

to offer support and information? Thank you!

[Guest guest]

I got your email and I am so grateful.  Beth also emailed me.  You two are

very encouraging and it helps to have others in the same boat.  I've had a

couple restless nights thinking about all this.  I have two children and I so

want to be around to watch them grow up!  Thank you for your note of hope,

Hans.  Could you tell me a bit about the trial itself.  I live in Minnesota

and will be traveling to Mich.  How often will I be going and for how long at a

time?  I talk to a research nurse tomorrow but I'm just curious from someone

that is going through is.  I' m grateful for any help.  

 

________________________________

From: Hans <hansl@...>

Sent: Sun, February 7, 2010 2:15:14 PM

Subject: [ ] Re: Ariad Trial

 

Hope you got my e-mail, ping me if not.

Hans

>

> On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and

will be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4

years but recently went on Sprycel which was not effective. Any others on this

trial to offer support and information? Thank you!

>

>

[Guest guest]

I don't know if you got my email- it didn't show I responded so i'm going to try

again.  Thanks, Beth, for your hopeful news. Hearing from you is very

encouraging!  Could you offer some help on what the trial itself is all

about?  I live in MN and will be traveling to michigan.  How often will I go

and for how long of a time each visit?  Thanks again!

karen

________________________________

From: " bethgalliart@... " <bethgalliart@...>

Sent: Sun, February 7, 2010 2:50:34 PM

Subject: Re: [ ] Ariad Trial

 

Hi ,

First of all, sorry to hear about the T315I diagnosis! However, there is

definitely hope! I am another Ariad-er and I'm doing great as well.

My experience with the drug has been overwhelmingly positive. I feel better than

I ever did on Gleevec--no cramping, fogginess, " gastric distress " , etc. Some

days I actually feel normal! I do have drier skin and some acne/rash and I do

get tired at times, but these are very tolerable! One caveat--when I started the

drug, after about 3 days, I had head to toe bone pain for about 72 hours and

then it went away (never to return). I was pretty miserable. This experience is

very rare and I only know of two others who experienced the same thing, so don't

think this will happen to you! (I just point it out for " full disclosure " ) .

Good luck with the trial drug--I hope you have as good an experience as I have.

Beth

[ ] Ariad Trial

 

On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will

be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years

but recently went on Sprycel which was not effective. Any others on this trial

to offer support and information? Thank you!

[Guest guest]

Hi , I have been on the Ariad drug since April 13, last year.  I reached

CCR  in Sep.

Dr, Tal[az is also my doctor,Suzanne is his trial nurse.  I am on 15 mg daily

and have no side effects.  A bit of heart burn and acid reflux from time to

time, but have had for years.

I live a little south of Cleveland, it is a 175 mile drive for me, once a

month  on Mondays.  I will be there Mon. afternoon, on the 15, my apt. with

the good dr. is at 4.  Hope we run into each other one of these days, and good

luck, I love this drug. Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: karenlinscott <karenlinscott@...>

Subject: [ ] Ariad Trial

Date: Sunday, February 7, 2010, 9:56 AM

 

On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and

will be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4

years but recently went on Sprycel which was not effective. Any others on this

trial to offer support and information? Thank you!

[Guest guest]

Bobby,

Thanks for your encouraging note.  I'm anxious to learn about the trial and

when and how long I'll be there.  I live in Minnesota so travel will be

interesting.  I hope to run into you as well. 

________________________________

From: ROBERTA DOYLE <rcd1929@...>

Sent: Sun, February 7, 2010 7:02:48 PM

Subject: Re: [ ] Ariad Trial

 

Hi , I have been on the Ariad drug since April 13, last year.  I reached

CCR  in Sep.

Dr, Tal[az is also my doctor,Suzanne is his trial nurse.  I am on 15 mg daily

and have no side effects.  A bit of heart burn and acid reflux from time to

time, but have had for years.

I live a little south of Cleveland, it is a 175 mile drive for me, once a

month  on Mondays.  I will be there Mon. afternoon, on the 15, my apt. with

the good dr. is at 4.  Hope we run into each other one of these days, and good

luck, I love this drug. Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: karenlinscott <karenlinscott>

Subject: [ ] Ariad Trial

groups (DOT) com

Date: Sunday, February 7, 2010, 9:56 AM

 

On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will

be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years

but recently went on Sprycel which was not effective. Any others on this trial

to offer support and information? Thank you!

[Guest guest]

DO YOU HAVE A FAX?  I CAN FAX YOU MY CALENDER FOR THE FIRST COUPLE OF WEEKS OF

THE TRIAL AND YOU WILL KNOW EXACTLY WHAT TO EXPECT.  IF NOT, I WILL JUST TYPE

IT OUT FOR YOU.

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: karenlinscott <karenlinscott>

Subject: [ ] Ariad Trial

groups (DOT) com

Date: Sunday, February 7, 2010, 9:56 AM

 

On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will

be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years

but recently went on Sprycel which was not effective. Any others on this trial

to offer support and information? Thank you!

[Guest guest]

I guess the Ariad trial was full.  Dr. Talpaz campaigned for me to get in this

one- supposedly successful with this mutation.  I'll keep you all posted

________________________________

From: jackie schneider <jschneider008@...>

Sent: Thu, February 11, 2010 9:07:28 PM

Subject: Re: [ ] Ariad Trial

 

Hi ,

Do you know why they chose the Deciphera trial and not the Ariad trial? I

haven't heard of this new drug either. Is it an oral med? You are our pioneer

for this one!! Please let us know the details when you can.

God's Blessings,

Jackie S.

____________ _________ _________ __

From: Linscott <karenlinscott>

groups (DOT) com

Sent: Tue, February 9, 2010 2:38:11 PM

Subject: Re: [ ] Ariad Trial

Bobby,

I got my clinical trial schedule yesterday so I have a good idea what to expet

now. I'm actually going to be in the Deciphera trial with hopefully as promising

results as the Ariad. It too works with the T315i mutation, so hopefully will

have good results. I start Tuesday with my screening day. Thanks!

____________ _________ _________ __

From: ROBERTA DOYLE <rcd1929sbcglobal (DOT) net>

groups (DOT) com

Sent: Sun, February 7, 2010 8:47:38 PM

Subject: Re: [ ] Ariad Trial

DO YOU HAVE A FAX? I CAN FAX YOU MY CALENDER FOR THE FIRST COUPLE OF WEEKS OF

THE TRIAL AND YOU WILL KNOW EXACTLY WHAT TO EXPECT. IF NOT, I WILL JUST TYPE IT

OUT FOR YOU.

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

From: karenlinscott <karenlinscott>

Subject: [ ] Ariad Trial

groups (DOT) com

Date: Sunday, February 7, 2010, 9:56 AM

On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will

be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years

but recently went on Sprycel which was not effective. Any others on this trial

to offer support and information? Thank you!

[Guest guest]

My trial nurse told me they want 6 patients to be in an Ariad trial, I assume

phase 2, with 45mg. ariad.  Call:  Cancer Answerline:1-800-865-1125 for info. 

Bobby

a ( Bobby ) Doyle, dob 12/17/29

Brecksville, Ohio, USA

DX 5/1995

Interferon 9 weeks/Hydroxyurea 5 years

02/2000 to 06/2002 Gleevec trial, OHSU

06/2002 Gleevec/Trisenox Trial, OHSU

06/2003 Gleevec/Zarnestra Trial, OHSU

04/2004 Sprycel Trial, MDACC, CCR in 10 months

04/2008 XL228 Trial, U of Mich.

01/2009 PCR 5.69

04/2009 Ariad Trial AP24534

09/2009 PCR 0.017

11/2009 PCR 0.034

#840 Zavie's Zero Club

[Guest guest]

Hi Lottie,

It's good to read your messages again. I hope you are doing well on the new

drug. When do you go back? My sister and I are flying down Sunday to Friday,

Weather permitting.

Have a Happy New Year. Give Jimmie my best.

Love,

Jackie S.

From: jamesduthu <lotajam@...>

Subject: [ ] Ariad trial

Date: Wednesday, December 29, 2010, 12:59 AM

 

Thank you , I did not get much done on my laptop because of issues

with their WiFi - it just didn't work in the apartments. Some had their own

private WiFi with them, so they were able to use their computers. The rest of

us vied for one of 2 spots where you could transmit, but my emails stayed in my

mailbox.

One little girl who is only 12 has had CLL three times and is looking for a

match. She used to sit beside me and do her homework, there was a teacher who

came every day for home schooling when she was not at the clinic. Even though

she was on heavy chemo, she was still doing her homework. She would confide to

me when she wasn't feeling well. She was up on the balcony waving to me as we

departed. It was a little sad to leave in a way, everyone was so nice. It is

truly a model for all large institutions that have a lot of cancer patients.

I was happy that I had some contact by reading emails and phone calls. Doesn't

pay to cry over something that was beyond my control. I tried to contact MDACC

and after 3 weeks of haggling with them, they discovered the apartments were not

in their inventory of buildings. I never said we were, only that MDACC

furnished the WiFi and let us ride piggy back. They spent days over there

trying to solve the problem. I feel if you gift someone with something it

should be in good working order, so I was trying to remedy it. It may get done

later and maybe never. I don't think enough people went to the office to sign

the list that reported the common problem.

Staying there is always an experience because of the kindness and generosity of

the people who tend to your needs and come and make such lovely meals. The

tables are set up and decorated. The rest of the time, we prepared simple meals

in the apartment. We went to the bigger stores who had better produce and a

variety of groceries. Whoever does the merchandising in setting up all the

produce certainly know what draws you in. I even broke down and paid $2.99 for

a yellow pepper and made stuffed peppers. LOL We could hack the

water in Houston, it has radiation in it, so we bought water and then thought

we would be better off getting a Zero water pitcher.

Take care , it's good to be back. Happy new year to you.

Carpe Diem,

Lottie Duthu

[Guest guest]

Hi Lottie,

I started Ariad the end of November so I am awaiting results of my first PCR

and

FISH test due back in the next week or two.  Keeping my fingers crossed for

progress! I also am on 45 mg.  I travel from Minnesota to Michigan monthly to

see Dr. Talpaz.  The only side effect that has been bothersome is a rash, but

that has subsided, and now extremely dry skin.  I have gone through a couple

tubs of Eucerin already.   The fasting has also been manageable for me.  I

hope

you are doing well on Ariad.  When did you start the trial?  We'll keep in

touch

with our progress. Wishing you a wonderful 2011!

Blessings,

________________________________

From: Lottie Duthu <lotajam@...>

CML < >

Sent: Fri, December 31, 2010 9:02:31 PM

Subject: [ ] Ariad Trial

 

To Linscott,

Glad to know another person in the Ariad Trial. Keep in touch, please and let us

know how you are doing. I am on 45 mg. a day. How are you doing with the 4 hr.

fast? I'm managing it o.k., since I don't eat much to begin with. I think some

who are having severe side effects, but are PCRU are looking very hard at

getting this drug as soon as it is available. I will probably be getting a BMA

in February. So far, it seems to be working, but I have to see my local

oncologist every month. You know how that goes, they are not CML specialists, so

all they can do is order the tests and just keep an eye out for us. They are

pretty much kept out of the loop with the trials, so it's like working with one

hand and the other tied behind your back. Good luck with your trial and stay

cancer free of breast cancer. XX crossing my fingers.

Carpe Diem,

Lottie Duthu