hello everyone from a MAJOR lurker

[Guest guest]

Dear Everyone:

I read most of your posts daily but rarely respond.

I see Dr. Druker every 6 months. NO ONE has ever had the reactions that I have

had to Gleevec. NO ONE. Dr. Druker calls me his upper 10% of all patients with

so many side effects and a lot of it baffles him. I was written up in BLOOD

magazine in hopes that Doctors would realize that each drug, chemo or not, needs

to be tailored to each individual patient---and I was proof of that!

Needless to say, after Gleevec PK monitoring, I am on a sub-optimal dosage

because it is what works for me and my body.

In regards to switching from one medication to another, even Dr. Druker would

tell us (my husband and I), that unless substantial proof could be made, WHY

would anyone wish to switch a drug when you need these in your arsenal? If

Gleevec is working, despite side effects, why change it IF YOU MAY need to

switch one day because of failure...not side effects. Many a visit entailed

montioring me carefully. Mind you, Dr. Druker believes SOLEY in quality of

life...so his decision to keep me on Gleevec was a soul searching endeavor!!!

I am taking 250 mg daily now under strick guidelines with Dr. Druker which

emcompasses every three months a Gleevec PK level montored by CML Alliance (at

the beginning in Pittsburgh-but paid for by Novartis) and a PCR test by blood

(used to be by BMB/BMA) every three months. I am PCRU!!! I began on 600 mg

since this is Dr. Druker " s favorite dosage. What we never realized was that a

patient can go into a toxic state which I did indeed enter. Having a blood

transfusion every 4-6 weeks was no picnic but I hung in there...

Side Effects can be managed by following routines. IF you have problems you may

contact me by email and I will try to guide you. Dr. Druker's office learned a

lot from me and I learned a lot from them.

It is hard to imagine what I looked like at the early stages of Gleevec and hard

to reflect back all the side effects I had. I still do have some side effects

now but they are manageable. Did we ever comtemplate going off Gleevec---sure

we did BUT it all boiled down to how much I wanted to use up all the different

avenues so quickly when I MIGHT need them down my CML Journey. The old theory

that if something is working, you just do not abandon it in hopes of greenre

pastures...you never know what those greener pastures may bring.

Gleevec is still standard of choice. Dr. Druker feels that physicians, in

gerenal, are too hasty to switch patients without exploring all the options with

side effects.

Rosenthal

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.