from your major lurker

[Guest guest]

I guess this is why I do not write often. Your comments were from the heart.

Luckily, for me, I had Dr. Druker, my local oncologist and my husband see me

through some VERY trying times with Gleevec! My MAIN point was that if you have

a willing doctor(s) and a wonderful companion, all odds are in your favor that

if the dosage of Gleevec were monitored VERY carefully, Gleevec was not a bust

for me or for anyone if done properly. I am NOT saying that Gleevec is for

everyone.

I resent the statement about the Dr. Druker supports and seems to back Gleevec

because he is the inventor. WRONG! That statement is completely WRONG! He

refers patients all the time when Gleevec is not working and HE DOES NOT

HESITATE. In my case, we hestitated TOO long but this is in hindsight. WE

LEARNED from my experience so that it would help others through their CML

journey. The only thing I would have done differently would be that the 600

dosage been decreased one year earlier. We do know that the 600 dosage does

bring more patients closer to PCRU. I am very fortunate. I have reached this

but at a major expense. AFTER 11 days on Gleevec, and Zavie can attest to this,

I had to stop the Gleevec since my reaction to it early on was debilitating. I

could not even lift a toothbrush to my mouth to brush my teeth. I was CARRIED

into the local doctor's office to have me looked at. Then my local doctor

called Dr. Druker to find out WHAT was going on. This was NOT to be taken

lightly. I was slowly increased over a period of 3 months back to 600 mg...baby

steps.

I look at it this way since I have my qualtiy of life back now. IF I HAD NOT

GONE THROUGH WHAT I HAD GONE THROUGH, there would not be a benchmark for others

to fall under. When I talked with Zavie at the beginning while running a 101.5

temperature and Zavie told me that NO ONE ran a temperature with Gleevec, we all

knew that I was special. The pain (and I have a HIGH tolerance for pain) had to

be managed by Celebrex. I had ALL the reactions to Gleevec EXCEPT the rash!

I did not like the " tone " in the emails that were generated from my response. I

was just conveying a simple message. DO NOT USE UP YOUR OPTIONS SO QUICKLY.

These options out there now are still few and far between. Dr. Druker, my

husband and local oncologist ALL agreed with this premise. If my quality of

life did not get better within those two years of trials and errors, Dr. Druker

was pulling the Gleevec from under me. I did get better. Sometimes it is

better to suffer the side effects than to out use your options.

THIS WAS ALL I WAS TRYING TO SAY!

I am a CML warrior and I am here to talk about it. I am so glad that I paved a

smoother road for SOME people.

Hugs,

Rosenthal

Miami, Florida

dx. January 8th, 2003

Began Gleevec: 4/10/2003

Ceased Gleevec: 4/21/2003

" Rebegan " Gleevec: 4/25/2003

Tranfusion dependent: May 2004-November 2005

Gleevec reduced to 400mg: 8/2004

Gleevec reduced to 300mg: 8/2005

Gleevec reduced to 200/300 alternating days: November 7, 2006 to

present day except now I am taking 250 every day now...

Still undetectable 9/24/2008

BMB/BMA PCRU!!! FISH 0% YEAH!!!!!

Next appointment with Dr. Druker: Thursday,April 09, 2009

Gleevec PK Level taken every 3 months monitored by Novartis and Dr.

Druker. PCR taken every 3 months!

PCR-in June was a weak positive but Dr. Druker felt that it was the

same as undetectable...repeated PCR in August 2008-undetectable!!!

(BMB/BMA PCRU!!! FISH 0% YEAH!!!!!)

I was told that I would not need another BMB as long as my numbers stay where

they are!!! YIPEEEE!

3/2009 PCRU!!!! Yippee!!! Nested test not being done any longer at OHSU.