response to Matt's post

[Guest guest]

At 04:36 PM 3/27/07 +0000, you wrote:

I have very terrible side effects with Gleevec and discussed moving to

AMN107 at my latest appointment at MD in Houston, Texas.

Their

recommendation is that anyone who gets good results from Gleevec

should not consider

moving to AMN107 or Sprycel. They should only do so if they are

unresponsive

or loose their responsiveness to Gleevec. One of the reasons they

cited was

the limited data on AMN107 and Sprycel and the extensive data they

have on

Gleevec and said " we don't want you to be a test case " .

Matt,

Other people I know have suggested that MDACC is very pro-Gleevec to

the exclusion of the other drugs???? that is what I have heard

expressed by some knowledgeable people. I do not hear the same

opinion that you have written expressed at OHSU by Dr. Druker. I do

not believe that Dr. Druker has any qualms about switiching people to

Sprycel or AMN if they have very bad side effects to Gleevec. And for

people who think you should SAVE these drugs for when you fail

Gleevec......he told me right from the start of my Sprycel trial that

I could always go back on Gleevec. Just because you try another drug,

it does not exclude you from returning to Gleevec.

The 2 newer drugs bind much tighter, which is why they are more

effective. If you can have a better affect with a lower dose (ie with

Sprycel) then maybe you have fewer side effects?? These drugs are

all quite similar actually in their action.

If you have a great result to Gleevec and your side effects are not

significant....yes, why change drugs. Many/most of the people on

Jerry's Sprycel TALK list have reported that they feel better on

Sprycel and have fewer side effects.

Also, right now they have trials where they are putting patients on

Sprycel first as a front line drug....and Dr. D told me that he

expects in the future that patients might be treated first, for a

year with Sprycel because it is more effective (suggested 300 x) and

then switch to Gleevec for maintenance. So, I really don't see 'these

warnings' that MDACC seems to put out????

C.

[Guest guest]

Thank you for your comments . It is always great to hear a different

perspective than the one that I am getting. MDACC is certainly aggressive in

their approach and not always on the same page as everyone else.

I myself strongly considered switching facilities as MDACC is sometimes very

impersonal, for instance I waited 3 hours past my appointment time this

month and the doctor came in for 3 minutes or less. (His PA is wonderful and

spent a long time answering questions and rendering opinions.) I only went

this

time at the behest of my local oncologist, who wanted to get results from

the latest tests and compare them with data from the same labs from my baseline

studies.

And for anyone that thinks that I am promoting one view over another, I am

not. I am simply trying to reflect what one view is and I realize others have

different treatment plans and different views. I hope it is helpful to get

different opinions.

Matt

ville, FL

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[Guest guest]

Matt wrote:

I myself strongly considered switching facilities as MDACC is sometimes very

impersonal, for instance I waited 3 hours past my appointment time this

month and the doctor came in for 3 minutes or less. (His PA is wonderful and

spent a long time answering questions and rendering opinions.)

And for anyone that thinks that I am promoting one view over another, I am

not. I am simply trying to reflect what one view is and I realize others have

different treatment plans and different views. I hope it is helpful to get

different opinions.

_____________

Hi Matt,

If you want to stay connected to a CML specialist, you might consider going

to Dr. Talpaz at Ann Arbor.....many of his MDACC patients have followed him

there, and they are reporting that is it a lot nicer, being a small and

much more personal facility.

When I see Dr. Druker at OHSU, which is also a small facility......he is

rarely late and I have a full hour of his time when I am due for a bmb (he

does his own). If I am just doing a follow-up for my trial, I still see him

personally for 1/2 hour.

I did not think you were promoting one point of view, rather just sharing

your information and experience from MDACC. I think it is good that we

come from different specialty centers and can share what we are told. We do

need to remember that these drugs are BIG business and there is a lot of $$

attached to them.....and the drug companies are funding different

research....and there is politics involved at times. Obviously Novartis

would like to hold on to the lion's share of this market. They are

presently running a side by side trial for newly dx of Gleevec vs

Sprycel....and will consider side effects and results.....this will be a

one year trial for each patient.

For you personally, I was mostly commenting that if you really have bad,

significant side effects to Gleevec....there is another opinion out there

(I believe) that says 'maybe try a different drug'.

Best to you,

C.