Re: Crossing the ten year line in the B2222 trial for GIST

[Guest guest]

Zavie, Bravo to Marina, and I know how she feels.  My five years was about to

be up  in Feb. of 2000 when I found out about the magic orange pill. 

Unfortunately  for me the magic was not there, but fortunately for me, the

orange pill kept me alive long enough  to participate in 5 more trials, I think

I may have hit on the right one now, Ariad.  Like Marina, who would believe 15

years after dx, I would still be here, alive and kicking?  And also like

Marina, and I'm sure many others, there is a tinge of guilt when I see so many

others at the cancer center, wearing masks, and on oxygen, with no hair, and

suffering, while I remain in comparative good health.  I am ever so thankful

for Dr. Druker and his magic pill, he is my hero, I only wish everyone could be

as fortunate as Marina and me, blessings to all, especially those good friends

of ours that are now preparing for transplants.  Blessings to them,  Bobby

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

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 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

From: Zavie <zmiller@...>

Subject: [ ] Crossing the ten year line in the B2222 trial for GIST

Date: Sunday, September 12, 2010, 9:59 AM

 

Here is a post from my friend Marina on one of the GIST support groups.

As

a brief introduction to Marina, she was already in hospice when she was able

to get into the B2222 trial.

Subject: Crossing the ten year line in the B2222 trial

Back from a quick trip to Boston. The appointment counted as my ten mark in

the B2222 trial (400 mg daily Gleevec). The holes in my liver look like

old, gray, dry crater scars on the moon. Though I understand that the

doctors say residual live KIT positive cells will remain in the lesions,

when I look at them on the CT images, I think of dead powdery dust.

Since there isn't much to talk about GIST-wise any longer, my DF doctor and

I sat and went through my CT images on his computer screen and looked at

other things in my abdomen...particularly the vasculature on my ovaries. He

called down and talked to their radiologist and in real time I got more

input about those blood vessels, which seem to be a benign condition. I got

a mini-radiology lesson from him. I give him high marks for being one of

the nicest and most cheerful doctors I have ever dealt with. That is his

demeanour, and I have learned his reputation with the staff in the clinic.

I figure during this doctor's average day at a major sarcoma center, he has

to deliver bad news, or news of terminal disease over and over again.

Another B2222 patient had commented in April at the ten year anniversary

meeting that he felt like imposter when we are walking through a cancer

center that has folks wearing masks over their faces, bald heads, or in

wheel chairs. I mentioned this to the cheerful doctor, who smiled and

nodded because he smiles and nods a lot to his patients. He understood,

because it is true. At some point along the ten years, my liver once

overtaken by cancer had became remarkably " unremarkable. "

If ten years ago today, someone had dumped a truck load of STI-571 capsules

in my front lawn with a note on the porch...take 400 mg every day, and

you'll have no problems, no need for follow up, tests, CTs, nothing...just

take the pills every single day...well I wouldn't have believed it. No one

would have believed it. And yet, it would have turned out to be perfectly

true. I would have probably also been insulted feeling that someone had

minimized my dire situation.

I have another image of myself from the movie Oh Brother Where Art Thou.

Just as Clooney and his two friends are about to be hung by the evil

sheriff, an enormous wall of water comes from nowhere and sweeps away

everyone, the hangman's noose, the evil sheriff. C is next seen

floating on a piece of wood in the flood, smiling He floats past a cow

standing on a roof top in the flood. He blinks for a second because a blind

man at the beginning of the movie had told him that he would see remarkable

things on his journey including a cow standing on a roof.

I know for sure if ten years ago today someone had told me that GIST would

become a highly treatable disease, that I would be alive ten years into the

future, and that I would have had the opportunities to interact with some of

the scientists and pharma companies who made it happen...I would have

considered it as something like being told that I would see a cow standing

on a roof during the 1930's. But it happened!

Marina

ID: zaviem

[Guest guest]

Bobby, this is great news! I've been on this chat for several weeks, but I had

no occasion to post. My uncle is on Sprycel and responding well, but we are

being told his age is his greatest obstacle. I see from your post that your are

literally weeks apart! Your success with Ariad is very encouraging to me.

Godspeed to you!

Merkow

e-Professional Technologies

PO Box 1457

Largo, FL 33779

727-230-6698 w

727-239-3713 c

727-230-9036 f

On Sep 12, 2010, at 11:21 AM, ROBERTA DOYLE <rcd1929@...> wrote:

> Zavie, Bravo to Marina, and I know how she feels. My five years was about to

be up in Feb. of 2000 when I found out about the magic orange pill.

Unfortunately for me the magic was not there, but fortunately for me, the

orange pill kept me alive long enough to participate in 5 more trials, I think

I may have hit on the right one now, Ariad. Like Marina, who would believe 15

years after dx, I would still be here, alive and kicking? And also like Marina,

and I'm sure many others, there is a tinge of guilt when I see so many others at

the cancer center, wearing masks, and on oxygen, with no hair, and suffering,

while I remain in comparative good health. I am ever so thankful for Dr. Druker

and his magic pill, he is my hero, I only wish everyone could be as fortunate as

Marina and me, blessings to all, especially those good friends of ours that are

now preparing for transplants. Blessings to them, Bobby

>

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

> 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 0.01

> 11/2009 PCR 0.034

> 02/2010 PCRU

> #840 Zavie's Zero Club

>

>

>

> From: Zavie <zmiller@...>

> Subject: [ ] Crossing the ten year line in the B2222 trial for GIST

>

> Date: Sunday, September 12, 2010, 9:59 AM

>

>

>

> Here is a post from my friend Marina on one of the GIST support groups. As

>

> a brief introduction to Marina, she was already in hospice when she was able

>

> to get into the B2222 trial.

>

> Subject: Crossing the ten year line in the B2222 trial

>

> Back from a quick trip to Boston. The appointment counted as my ten mark in

>

> the B2222 trial (400 mg daily Gleevec). The holes in my liver look like

>

> old, gray, dry crater scars on the moon. Though I understand that the

>

> doctors say residual live KIT positive cells will remain in the lesions,

>

> when I look at them on the CT images, I think of dead powdery dust.

>

> Since there isn't much to talk about GIST-wise any longer, my DF doctor and

>

> I sat and went through my CT images on his computer screen and looked at

>

> other things in my abdomen...particularly the vasculature on my ovaries. He

>

> called down and talked to their radiologist and in real time I got more

>

> input about those blood vessels, which seem to be a benign condition. I got

>

> a mini-radiology lesson from him. I give him high marks for being one of

>

> the nicest and most cheerful doctors I have ever dealt with. That is his

>

> demeanour, and I have learned his reputation with the staff in the clinic.

>

> I figure during this doctor's average day at a major sarcoma center, he has

>

> to deliver bad news, or news of terminal disease over and over again.

>

> Another B2222 patient had commented in April at the ten year anniversary

>

> meeting that he felt like imposter when we are walking through a cancer

>

> center that has folks wearing masks over their faces, bald heads, or in

>

> wheel chairs. I mentioned this to the cheerful doctor, who smiled and

>

> nodded because he smiles and nods a lot to his patients. He understood,

>

> because it is true. At some point along the ten years, my liver once

>

> overtaken by cancer had became remarkably " unremarkable. "

>

> If ten years ago today, someone had dumped a truck load of STI-571 capsules

>

> in my front lawn with a note on the porch...take 400 mg every day, and

>

> you'll have no problems, no need for follow up, tests, CTs, nothing...just

>

> take the pills every single day...well I wouldn't have believed it. No one

>

> would have believed it. And yet, it would have turned out to be perfectly

>

> true. I would have probably also been insulted feeling that someone had

>

> minimized my dire situation.

>

> I have another image of myself from the movie Oh Brother Where Art Thou.

>

> Just as Clooney and his two friends are about to be hung by the evil

>

> sheriff, an enormous wall of water comes from nowhere and sweeps away

>

> everyone, the hangman's noose, the evil sheriff. C is next seen

>

> floating on a piece of wood in the flood, smiling He floats past a cow

>

> standing on a roof top in the flood. He blinks for a second because a blind

>

> man at the beginning of the movie had told him that he would see remarkable

>

> things on his journey including a cow standing on a roof.

>

> I know for sure if ten years ago today someone had told me that GIST would

>

> become a highly treatable disease, that I would be alive ten years into the

>

> future, and that I would have had the opportunities to interact with some of

>

> the scientists and pharma companies who made it happen...I would have

>

> considered it as something like being told that I would see a cow standing

>

> on a roof during the 1930's. But it happened!

>

> Marina

>

> ID: zaviem

>

>

[Guest guest]

I am 's cousin, it is my Dad who has CML.  He was diagnosed in February

this year in the chronic phase, Gleevec worked immediately after a few months

they reduced his dose from 400 mg to 100 mg per day (not sure why). He was told

her would be fine and would not die from Luekemia;  in August he was not

feeling well and we took him to the emergency room and found out he was  in

blast crisis and he  is climbing his way out of this as we speek. His last bone

marrow looked really good; he had 0.3% blasts.  As said the sprycel is

working but we have been told that this tends to be a short remission. On the

other hand the nurse told me the other day that she has clients that have been

on it for 3 years and have not relpased. My dad is 80; looks 60 and has never

had any other health problems. He is very tired, needs blood about once a week.

We are so new to this and I would appreciate any help and advice that you can

give. We live in Dallas so MD

is just a few hours away.We will go anywhere though!  Has anyone else

been in blast crisis?

>

> From: Zavie <zmiller@...>

> Subject: [ ] Crossing the ten year line in the B2222 trial for GIST

>

> Date: Sunday, September 12, 2010, 9:59 AM

>

>

>

> Here is a post from my friend Marina on one of the GIST support groups. As

>

> a brief introduction to Marina, she was already in hospice when she was able

>

> to get into the B2222 trial.

>

> Subject: Crossing the ten year line in the B2222 trial

>

> Back from a quick trip to Boston. The appointment counted as my ten mark in

>

> the B2222 trial (400 mg daily Gleevec). The holes in my liver look like

>

> old, gray, dry crater scars on the moon. Though I understand that the

>

> doctors say residual live KIT positive cells will remain in the lesions,

>

> when I look at them on the CT images, I think of dead powdery dust.

>

> Since there isn't much to talk about GIST-wise any longer, my DF doctor and

>

> I sat and went through my CT images on his computer screen and looked at

>

> other things in my abdomen...particularly the vasculature on my ovaries. He

>

> called down and talked to their radiologist and in real time I got more

>

> input about those blood vessels, which seem to be a benign condition. I got

>

> a mini-radiology lesson from him. I give him high marks for being one of

>

> the nicest and most cheerful doctors I have ever dealt with. That is his

>

> demeanour, and I have learned his reputation with the staff in the clinic.

>

> I figure during this doctor's average day at a major sarcoma center, he has

>

> to deliver bad news, or news of terminal disease over and over again.

>

> Another B2222 patient had commented in April at the ten year anniversary

>

> meeting that he felt like imposter when we are walking through a cancer

>

> center that has folks wearing masks over their faces, bald heads, or in

>

> wheel chairs. I mentioned this to the cheerful doctor, who smiled and

>

> nodded because he smiles and nods a lot to his patients. He understood,

>

> because it is true. At some point along the ten years, my liver once

>

> overtaken by cancer had became remarkably " unremarkable. "

>

> If ten years ago today, someone had dumped a truck load of STI-571 capsules

>

> in my front lawn with a note on the porch...take 400 mg every day, and

>

> you'll have no problems, no need for follow up, tests, CTs, nothing...just

>

> take the pills every single day...well I wouldn't have believed it. No one

>

> would have believed it. And yet, it would have turned out to be perfectly

>

> true. I would have probably also been insulted feeling that someone had

>

> minimized my dire situation.

>

> I have another image of myself from the movie Oh Brother Where Art Thou.

>

> Just as Clooney and his two friends are about to be hung by the evil

>

> sheriff, an enormous wall of water comes from nowhere and sweeps away

>

> everyone, the hangman's noose, the evil sheriff. C is next seen

>

> floating on a piece of wood in the flood, smiling He floats past a cow

>

> standing on a roof top in the flood. He blinks for a second because a blind

>

> man at the beginning of the movie had told him that he would see remarkable

>

> things on his journey including a cow standing on a roof.

>

> I know for sure if ten years ago today someone had told me that GIST would

>

> become a highly treatable disease, that I would be alive ten years into the

>

> future, and that I would have had the opportunities to interact with some of

>

> the scientists and pharma companies who made it happen...I would have

>

> considered it as something like being told that I would see a cow standing

>

> on a roof during the 1930's. But it happened!

>

> Marina

>

> ID: zaviem

>

>

[Guest guest]

Thanks for this post Zavie. I passed it on to my family in israel,

where one of my cousins is being treated with Gleevec for GIST.

I know that she does not feel very well on Gleevec.

Does anyone know whether they are trying other TKI's for GIST?

Leah Peer

leahpeer@...

[Guest guest]

Hi , I know  a few folks on it that are my age, and then there's Lottie who

is in Houston right now waiting to get into the phase 11 trial.  ( ha ha, she

is one year older than me!) The fact that I am only on 15 mg most likely has a

lot to do with no side effects, I am very lucky that that low a dose has worked

it's magic.  Good luck to your uncle, Bobby

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

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 0.01

11/2009 PCR 0.034

02/2010 PCRU

#840 Zavie's Zero Club

>

> From: Zavie <zmiller@...>

> Subject: [ ] Crossing the ten year line in the B2222 trial for GIST

>

> Date: Sunday, September 12, 2010, 9:59 AM

>

>

>

> Here is a post from my friend Marina on one of the GIST support groups. As

>

> a brief introduction to Marina, she was already in hospice when she was able

>

> to get into the B2222 trial.

>

> Subject: Crossing the ten year line in the B2222 trial

>

> Back from a quick trip to Boston. The appointment counted as my ten mark in

>

> the B2222 trial (400 mg daily Gleevec). The holes in my liver look like

>

> old, gray, dry crater scars on the moon. Though I understand that the

>

> doctors say residual live KIT positive cells will remain in the lesions,

>

> when I look at them on the CT images, I think of dead powdery dust.

>

> Since there isn't much to talk about GIST-wise any longer, my DF doctor and

>

> I sat and went through my CT images on his computer screen and looked at

>

> other things in my abdomen...particularly the vasculature on my ovaries. He

>

> called down and talked to their radiologist and in real time I got more

>

> input about those blood vessels, which seem to be a benign condition. I got

>

> a mini-radiology lesson from him. I give him high marks for being one of

>

> the nicest and most cheerful doctors I have ever dealt with. That is his

>

> demeanour, and I have learned his reputation with the staff in the clinic.

>

> I figure during this doctor's average day at a major sarcoma center, he has

>

> to deliver bad news, or news of terminal disease over and over again.

>

> Another B2222 patient had commented in April at the ten year anniversary

>

> meeting that he felt like imposter when we are walking through a cancer

>

> center that has folks wearing masks over their faces, bald heads, or in

>

> wheel chairs. I mentioned this to the cheerful doctor, who smiled and

>

> nodded because he smiles and nods a lot to his patients. He understood,

>

> because it is true. At some point along the ten years, my liver once

>

> overtaken by cancer had became remarkably " unremarkable. "

>

> If ten years ago today, someone had dumped a truck load of STI-571 capsules

>

> in my front lawn with a note on the porch...take 400 mg every day, and

>

> you'll have no problems, no need for follow up, tests, CTs, nothing...just

>

> take the pills every single day...well I wouldn't have believed it. No one

>

> would have believed it. And yet, it would have turned out to be perfectly

>

> true. I would have probably also been insulted feeling that someone had

>

> minimized my dire situation.

>

> I have another image of myself from the movie Oh Brother Where Art Thou.

>

> Just as Clooney and his two friends are about to be hung by the evil

>

> sheriff, an enormous wall of water comes from nowhere and sweeps away

>

> everyone, the hangman's noose, the evil sheriff. C is next seen

>

> floating on a piece of wood in the flood, smiling He floats past a cow

>

> standing on a roof top in the flood. He blinks for a second because a blind

>

> man at the beginning of the movie had told him that he would see remarkable

>

> things on his journey including a cow standing on a roof.

>

> I know for sure if ten years ago today someone had told me that GIST would

>

> become a highly treatable disease, that I would be alive ten years into the

>

> future, and that I would have had the opportunities to interact with some of

>

> the scientists and pharma companies who made it happen...I would have

>

> considered it as something like being told that I would see a cow standing

>

> on a roof during the 1930's. But it happened!

>

> Marina

>

> ID: zaviem

>

>

[Guest guest]

Hi Leah,

Both Sprycel and Tasigna are used when a GIST patient doesn't respond to

Gleevec. There are other drugs (like Sutent) that also work.

Zavie

Zavie (age 72)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

3.6 log reduction Sep/08

3.7 log reduction Jan/09

3.8 log reduction May/09

3.8 log reduction Aug/09

4.0 log reduction Dec/09

4.4 log reduction Apr/10

e-mail: <mailto:zmiller@...> zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

From: [mailto: ] On Behalf Of Leah

Sent: September-13-10 6:32 PM

Subject: [ ] Re: Crossing the ten year line in the B2222 trial for GIST

Thanks for this post Zavie. I passed it on to my family in israel,

where one of my cousins is being treated with Gleevec for GIST.

I know that she does not feel very well on Gleevec.

Does anyone know whether they are trying other TKI's for GIST?

Leah Peer

leahpeer@... <mailto:leahpeer%40gmail.com>