Re: Re: Leukemia Cure without medication - Claude

[Guest guest]

Jerry can y give me more info on this trial of " CURE " Thanks

T

Sent from my Verizon Wireless BlackBerry

[ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug.com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

Just wondering how can they say CURE when some that were taken off had their CML

to come back

________________________________

From: csaomiguel <csaomiguel@...>

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

Because this is not a cure, it is a trial to find a cure.  It took over 10

years of trials  to get where we are today, it could take another 10 to find a

cure.  That is way better than where we were 30 years ago, but let's hope it

doesn't take that long.

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: anita <awristen1@...>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

Date: Friday, March 12, 2010, 1:18 PM

 

Just wondering how can they say CURE when some that were taken off had

their CML to come back

____________ _________ _________ __

From: csaomiguel <csaomiguel (DOT) ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

thank you Bobby, here's to Hope

________________________________

From: ROBERTA DOYLE <rcd1929@...>

Sent: Fri, March 12, 2010 1:30:30 PM

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

Because this is not a cure, it is a trial to find a cure. It took over 10 years

of trials to get where we are today, it could take another 10 to find a cure.

That is way better than where we were 30 years ago, but let's hope it doesn't

take that long.

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: anita <awristen1 (DOT) com>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

groups (DOT) com

Date: Friday, March 12, 2010, 1:18 PM

Just wondering how can they say CURE when some that were taken off had their CML

to come back

____________ _________ _________ __

From: csaomiguel <csaomiguel@ . ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

PLEASE, WHAT IS THE CONTACT FOR JERRY ....

From: anita <awristen1 (DOT) com>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

groups (DOT) com

Date: Friday, March 12, 2010, 1:18 PM

Just wondering how can they say CURE when some that were taken off had their CML

to come back

____________ _________ _________ __

From: csaomiguel <csaomiguel@ . ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

www.newcmldrug. com This is the contact for Jerry

________________________________

From: mary mary <chatgal2000@...>

Sent: Fri, March 12, 2010 2:17:29 PM

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

PLEASE, WHAT IS THE CONTACT FOR JERRY ....

From: anita <awristen1 (DOT) com>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

groups (DOT) com

Date: Friday, March 12, 2010, 1:18 PM

Just wondering how can they say CURE when some that were taken off had their CML

to come back

____________ _________ _________ __

From: csaomiguel <csaomiguel@ . ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

Thank you Anita, after I sent the email I saw it right smack-dab in the middle

of the post ...

From: anita <awristen1 (DOT) com>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

groups (DOT) com

Date: Friday, March 12, 2010, 1:18 PM

Just wondering how can they say CURE when some that were taken off had their CML

to come back

____________ _________ _________ __

From: csaomiguel <csaomiguel@ . ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

Your Welcome

LOL that is something I would do for sure hope you can find some answers

________________________________

From: mary mary <chatgal2000@...>

Sent: Fri, March 12, 2010 4:26:34 PM

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

Thank you Anita, after I sent the email I saw it right smack-dab in the middle

of the post ...

From: anita <awristen1 (DOT) com>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

groups (DOT) com

Date: Friday, March 12, 2010, 1:18 PM

Just wondering how can they say CURE when some that were taken off had their CML

to come back

____________ _________ _________ __

From: csaomiguel <csaomiguel@ . ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has someone

tried to stop? Your thoughts are appreciated, God bless you all.

>

[Guest guest]

________________________________

From: ROBERTA DOYLE <rcd1929@...>

Sent: Fri, March 12, 2010 1:30:30 PM

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

Because this is not a cure, it is a trial to find a cure. It took over 10 years

of trials to get where we are today, it could take another 10 to find a cure.

That is way better than where we were 30 years ago, but let's hope it doesn't

take that long.

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: anita <awristen1 (DOT) com>

Subject: Re: [ ] Re: Leukemia Cure without medication - Claude

groups (DOT) com

Date: Friday, March 12, 2010, 1:18 PM

Just wondering how can they say CURE when some that were taken off had their CML

to come back

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From: csaomiguel <csaomiguel@ . ca>

groups (DOT) com

Sent: Fri, March 12, 2010 10:03:52 AM

Subject: [ ] Re: Leukemia Cure without medication - Claude

Claude,

It seems you are not alone in thinking about getting off the drug.

There are several studies underway to determine if Gleevec + low dose Interferon

could result in a drug free status. A trial with Sprycel is to be added too.

Yesterday, Jerry Mayfield who runs the www.newcmldrug. com site posted this

message about Dr. Talpaz (who is arguably one of the very top CML docs) who is

recruiting and using the word CURE. Imagine!

Trials for patients wishing to stop all CML drugs (Can you spell " CURE " ?).

by Jerry Mayfield

Dr. Talpaz needs volunteers to participate in trials which combine TKIs with

interferon and possibly other drugs with the goal of stopping all drugs and

remaining CML free (Can you spell " CURE " ?). He says that the present trials are

proceeding very slowly due a lack of trial participants.

He is very optimistic that this approach might bring a cure to many patients and

is planing additional combination trials for the near future.

Right now he is doing a Gleevec/Pegulated Interferon trial and plans another

using Sprycel in the near future. He also has other combinations in mind

including drugs that kill CML stem cells.

If you are interested, please contact me and I will give you contact

information.

Regards,

Jerry

This is clearly exciting stuff though it will only be an option for the small

percentage of patients who achieve PCRU. But it starts a path and perhaps it

points the way for the rest of us longer term. I am not a PCRU patient, indeed

after 11.4 years, I am not even a 0% Ph+ patient so I won't be able to try this

approach but I would if I could. I was dx'd before Gleevec so I was on IFN and

Ara-C. I had a TERRIBLE time on it. And though it would fill me with dread to

try it again, I know I would for the opportunity to get off all meds. I would

only do so with a CML specialist and preferably in the confines of a trial. Not

only would I be thrilled to be off all medication, my bank account would be

better off too. I pay a minimum of $500 per month as a co-pay in Canada.

Contact Jerry or Dr. Talpaz to get more information.

Best to you,

dx 11/98

>

> I have been taken gleevec since October 2007 and I am remission. I believe the

bone marrow can reconstruct itself. I asked the doctor to see if I can stop

taken Gleevec for awhile to see if my bone marrow is functioning normal again.

He says I have to take Gleevec for the rest of my life. I know what is going to

happen to my body eventually, I am going to die from all the toxic effects of

Gleevec. I am thinking of stopping the medication for sometime, because the

fatigue is too much for me. Has anyone of you thought about this, or has

someone tried to stop? Your thoughts are appreciated, God bless you all.

>