Dr. Druker

September 29, 2008

Hi, I'm one of the ones who tolerated the side effects of Gleevec,, but after 1

1/2 years I had not achieved CCR. I went on to Gleevec/Trisenox,

Gleevec/Zarnestra, Sprycel, and altough I reached CCR on Sprycel, the side

effects became intolerable. So now we're working on another trial, XL228, in

CCR with very few side effects. To me, thanks to all these trials, I have lived

about 8 years longer than I should have, had I not been in the trials.

It isn't easy, and it would be just great if one of them would work and stay

working without the agonizing side effects. I guess I'm saying, don't give up.

If one doesn't work, look for another. And remember, we are putting stuff in

our bodies that no one else has ever used,

and it's a crap shoot - we have no idea if it will work or not, and we have no

idea what effect these drugs are going to have on the rest of our body. like

liver, kidneys, heart, skin, etc.

So hang in there, if one doesn't suit you, another might. They all helped me to

live to be

78, and I've been fighting this battle since 1995, and others have been at war

with cml for over 30 years! Now THAT'S a battle !! good luck to everyone,

Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

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

06/02/08 - CCR ( in 4 weeks)

>

> I listened and watched Dr. Druker. I am confused. Glevec was not as

> wonderful as he makes it out to be. He is talking about the many that have

> benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

> Inside and out. And when he talks about Glevec is he meaning all the other

> medications like sprycel and tasigna also???????

> ____________ _________

>

> Hi Sharon,

> Gleevec is an amazing drug.......the most successful new cancer drug ever!

> 90+% of newly diagnosed in chronic phase will go into a 'remission' and

> tolerate the drug with acceptable side effects. Before Gleevec, cml was

> mostly a fatal disease..... unless you survived a BMT. There is still a %

> that Gleevec does not work well for, or they do not tolerate the

> drug.....all these newer drugs would not even be here if it was not for

> Gleevec (they are the sons/daughters of Gleevec!)

>

> Gleevec kept me alive until a more potent drug came along. I was on Gleevec

> (mostly 800mg) for over 5 years....I have now been on Sprycel for 3 years

> and this drug brought me to CCR.....but I still would not say that Gleevec

> was not a great drug (even though it was not the complete answer for me).

> There are very few drugs that have the success rate that Gleevec has....and

> it is still considered to be front line treatment for cml.

>

> You can combat many of the side effects and other problems related to

> taking a drug like this long term by working with a naturopath and

> complementary medical care. Much of this is not in the realm of traditional

> medicine or your local oncolgist. Dr. Druker is my primary onc and he has

> no problem at all with me working with a naturopath and running her

> suggestions by him and his pharmacist.. ...and the alternative care has been

> beneficial.

>

> Some people do struggle more than others to find the best treatment for

> themselves.. ..we have 2 such cml warriors on this list.....Bobbie and

> Lottie....but their fighting spirit will keep them with us. The goal (per

> Rockefeller, a fellow cmler) is to die from something other than

> cml!!

> C.

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospgcsli (DOT) stanford. edu

montereyunderwater@ gmail.com

www.stanford. edu/~marcospg/

September 29, 2008

Thank you Marcos,

I realize all of that. And I thank the power every day for keeping me alive

for as long as I have been. Almost 5 years after Dx.

I know that y u are right and I respect it all.

Aloha Sharon

_____

From: [mailto: ] On Behalf Of Marcos

Perreau Guimaraes

Sent: Sunday, September 28, 2008 4:07 PM

Subject: Re: [ ] Re: Dr. Druker

Gleevec and the other drugs available now are not a cure, we still

have leukemia, and the drugs (not only gleevec) have side effects that

vary with each of us. Some days I feel a bit strange, some have far

worse side effects and have to switch drugs. And for a few nothing

seems to work. But even for the latter, the impact of gleevec in

drawing the industry attention on cml is a chance to find a trial that

works better.

Without the succes of gleevec to boost the pharmatical industry

interrest in CML (remember it's a fairly rare disease, not the kind of

market they usually go after) there wouldn't be Sprycel or Tasigna,

and probably any of the next generation drugs currently in trials.

Gleevec is the greatest advance in cancer treatment ever. It will

probably go in history as one of the great milestones in medecine. CML

was just 10 years ago one of the deadliest cancers, pretty much a

death sentence. Without Gleevec a lot of us wouldn't be reading or

writing to this list today, I probably wouldn't (I don't have a HLA

match). The odds of being alive at 6 years after dx before gleevec

were really poor, and hope was afforded only to the few with a HLA

match and strong enough to undergo a bone marrow transplant (with of

course the notable exeption of Skip). Now not only most survive 6

years without going through the ordeal of a BMT, but have very good

odds not to relapse and to live a normal life span.

Marcos.

On Sun, Sep 28, 2008 at 11:48 AM, Cogan <ncoganuoregon (DOT)

<mailto:ncogan%40uoregon.edu> edu> wrote:

>

> I listened and watched Dr. Druker. I am confused. Glevec was not as

> wonderful as he makes it out to be. He is talking about the many that have

> benefited from it. I did not. I wish it was that easy. Glevec tore me

apart.

> Inside and out. And when he talks about Glevec is he meaning all the other

> medications like sprycel and tasigna also???????

> _____________________

>

> Hi Sharon,

> Gleevec is an amazing drug.......the most successful new cancer drug ever!

> 90+% of newly diagnosed in chronic phase will go into a 'remission' and

> tolerate the drug with acceptable side effects. Before Gleevec, cml was

> mostly a fatal disease.....unless you survived a BMT. There is still a %

> that Gleevec does not work well for, or they do not tolerate the

> drug.....all these newer drugs would not even be here if it was not for

> Gleevec (they are the sons/daughters of Gleevec!)

>

> Gleevec kept me alive until a more potent drug came along. I was on

Gleevec

> (mostly 800mg) for over 5 years....I have now been on Sprycel for 3 years

> and this drug brought me to CCR.....but I still would not say that Gleevec

> was not a great drug (even though it was not the complete answer for me).

> There are very few drugs that have the success rate that Gleevec

has....and

> it is still considered to be front line treatment for cml.

>

> You can combat many of the side effects and other problems related to

> taking a drug like this long term by working with a naturopath and

> complementary medical care. Much of this is not in the realm of

traditional

> medicine or your local oncolgist. Dr. Druker is my primary onc and he has

> no problem at all with me working with a naturopath and running her

> suggestions by him and his pharmacist.....and the alternative care has

been

> beneficial.

>

> Some people do struggle more than others to find the best treatment for

> themselves....we have 2 such cml warriors on this list.....Bobbie and

> Lottie....but their fighting spirit will keep them with us. The goal (per

> Rockefeller, a fellow cmler) is to die from something other than

> cml!!

> C.

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospgcsli (DOT) <mailto:marcospg%40csli.stanford.edu> stanford.edu

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

www.stanford.edu/~marcospg/

September 29, 2008

Sharon

Nice! Now I have something to shoot for Jet Skiing!! Keep your chin up and your

head down!

From: Sharon & Denny <onthewtrdiscobay (DOT) <mailto:onthewtr% 40discobay. net>

net>

Subject: RE: [ ] Dr. Druker

groups (DOT) <mailto:% 40groups. com> com

Date: Sunday, September 28, 2008, 1:29 AM

Lotti

I listened and watched Dr. Druker. I am confused. Glevec was not as

wonderful as he makes it out to be. He is talking about the many that have

benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

Inside and out. And when he talks about Glevec is he meaning all the other

medications like sprycel and tasigna also???????

But I must remember one thing...it is keeping me alive. (Tasigna) Gleevec

kept me alive also and it is a miracle drug and I wish that I could tolerate

it..

Now I am worried a fter reading all these latest posts about organs shutting

down on Tasigna. How could that happen if we are monitored so closely????

Don't you think that they would catch the problem before it got that bad???

I am depressed and upset after reading all of this.

although I am PCRU and may stay PCRU---the medication may kill me sooner

then the CML..Isn't that how it always is???????

Aloha Sharon

_____

From: groups (DOT) com [mailto:] On Behalf Of

Lottie

Duthu

Sent: Saturday, September 27, 2008 9:50 PM

CML

Subject: [ ] Dr. Druker

A small slice of Dr. Druker's opinion on CML.

http://su2c. <http://su2c. standup2cancer. org/sutv? sid=0 & vid= 2469>

standup2cancer. org/sutv? sid=0 & vid= 2469

Good viewing,

Lottie

September 29, 2008

Would some one give the e-mail addresses of Dr Drucker and Dr talpaz, and any

oth exceptional docs who could give me advive? And how long does it take to

receive a letter back? thankyou Debra

Re: [ ] Re: Dr. Druker