GLEEVEC DOSAGES & INDIVIDUALITY ! ! !

[Guest guest]

Hey e. . .FYI/my 2 cents only. . .

I don't know whether or not I sent you my 'Newbie' letter after your

diagnosis. At 53 in 2003; I was diagnosed in the 'accelerated' stage going into

the blast stage. I had been admitted to the hospital after going to the ER

thinking I had bacterial Pneumonia for the 4th time. At that time, my diagnosing

doctor told me that he was putting me on this 'new medication' Gleevec per

protocol but he didn't expect it to work for me. He also gave me a referral to

the UM Comprehensive Cancer Center in my area. 4 out of 6 Specialists there

determined that I wasn't eligible for a BMT due to 15 fatal/terminal/chronic

diseases and 6/6 determined that I had a morbid mortality of 2-5 months. I came

home, had a 2 1/2 week pity party, and then I armed myself to fight the battle

of my life for my life. I, with the help of these groups; know more about my bug

than my H/O~~Hematologist-Oncologist.

There weren't any trials comparing dosage. . .I was placed on 400, then 600 -

800 and was hospitalized. My dosage was lowered to 400 and there I stayed until

I reached " 0/Negative " on the FISH Test. I was hospitalized 3xs with low ANC and

given Procrit. I went from 800,000 per Million at diagnosis to 0.00312 on my 4th

RT-PCR Test results on 5/21/07.

My survival is due to me learning about my bug as an individual and adjusting

my dosage of our gold~what I call Gleevec. We are each a statistic to the

doctors, but an individual in our unique survival of this bug~what I call CML.

After I reached " 0 " on the FISH Test, I adjusted my dosage to 300 m.g. daily.

Now, 2 years later, I am taking 300 m.g. on 2 - 3 days a week. My reasoning is .

.. . " I needed 400 to get me to " 0 " therefore 300 should maintain me. Adding my

heart, liver, lung, ortho and 15 other diseases; I don't need 300 daily for

maintenance. I've heard of survivors 'poisoning' their systems~~dying in the

early days from major organ failure. I have educated my H/O and at every visit

he says, " keep on doing what you're doing " .

Sweetie, 400 is the standard dosage, but it was 'never' the dosage for me. I

went through 'H**L with side effects. I'm not telling you to do what I did, I

kept accurate records of all blood work, dosages, side effects, etc., until I

found my 'niche' (what worked for me). Should you have any questions, don't

hesitate to email me. " I've Been There/Done That . . . AND

" I AM A SURVIVOR. . . I AIN'T FINISHED YET " ! ! !

I will be saying Xtra prayer for you. . . " K "

" K "

" I AIN'T FINISHED YET " !!!

[Guest guest]

K, Thank you so much for your info. You are a great source of inspiration. I

do weekly CBC's so I guess playing around with my dosage can't hurt.

Thanks, e

[ ] GLEEVEC DOSAGES & INDIVIDUALITY ! ! !

Hey e. . .FYI/my 2 cents only. . .

I don't know whether or not I sent you my 'Newbie' letter after your

diagnosis. At 53 in 2003; I was diagnosed in the 'accelerated' stage going into

the blast stage. I had been admitted to the hospital after going to the ER

thinking I had bacterial Pneumonia for the 4th time. At that time, my diagnosing

doctor told me that he was putting me on this 'new medication' Gleevec per

protocol but he didn't expect it to work for me. He also gave me a referral to

the UM Comprehensive Cancer Center in my area. 4 out of 6 Specialists there

determined that I wasn't eligible for a BMT due to 15 fatal/terminal/chronic

diseases and 6/6 determined that I had a morbid mortality of 2-5 months. I came

home, had a 2 1/2 week pity party, and then I armed myself to fight the battle

of my life for my life. I, with the help of these groups; know more about my bug

than my H/O~~Hematologist-Oncologist.

There weren't any trials comparing dosage. . .I was placed on 400, then 600 -

800 and was hospitalized. My dosage was lowered to 400 and there I stayed until

I reached " 0/Negative " on the FISH Test. I was hospitalized 3xs with low ANC and

given Procrit. I went from 800,000 per Million at diagnosis to 0.00312 on my 4th

RT-PCR Test results on 5/21/07.

My survival is due to me learning about my bug as an individual and adjusting

my dosage of our gold~what I call Gleevec. We are each a statistic to the

doctors, but an individual in our unique survival of this bug~what I call CML.

After I reached " 0 " on the FISH Test, I adjusted my dosage to 300 m.g. daily.

Now, 2 years later, I am taking 300 m.g. on 2 - 3 days a week. My reasoning is .

.. . " I needed 400 to get me to " 0 " therefore 300 should maintain me. Adding my

heart, liver, lung, ortho and 15 other diseases; I don't need 300 daily for

maintenance. I've heard of survivors 'poisoning' their systems~~dying in the

early days from major organ failure. I have educated my H/O and at every visit

he says, " keep on doing what you're doing " .

Sweetie, 400 is the standard dosage, but it was 'never' the dosage for me. I

went through 'H**L with side effects. I'm not telling you to do what I did, I

kept accurate records of all blood work, dosages, side effects, etc., until I

found my 'niche' (what worked for me). Should you have any questions, don't

hesitate to email me. " I've Been There/Done That . . . AND

" I AM A SURVIVOR. . . I AIN'T FINISHED YET " ! ! !

I will be saying Xtra prayer for you. . . " K "

" K "

" I AIN'T FINISHED YET " !!!