Re: Re: Hello, once again!

[Guest guest]

Hi ,

I had the trough imatinib plasma level tested for the opposite reason,

to see if I should increase the dose from 400mg. The level came back

at 600ng/ml which is acceptable (the low limit is 500ng/ml), the

optimal value is 1000ng/ml. The average for people in MMR (>3 log

reduction) is about 1450ng/ml. I stayed on 400mg and eventually

reached 3 log reduction about a year later (now more like 5, not PCRU

but too low to give a number). I can imagine 3000ng/ml is way too

much, it sounds like you probably could halve your initial dose.

My dr from Paris did the referral for the clinical trial and with

Novartis for a free test but I am in California so she sent me the

needles and tubes from Paris, I did the blood draw on myself (a

girlfriend said she d do it but got spooked when she got the needle in

hand) and sent it in the DHL envelope prepaid by Novartis back to

Bordeaux, France. I was a bit skeptical on the whole process working

but they got it in time and I didn't spend a cent.

Here is a paper on the subject with the numbers I gave above :

http://tinyurl.com/aqjt4a

Marcos

On Sun, Mar 1, 2009 at 3:36 PM, <Educatorsusan@...> wrote:

> Hello, Everyone:

>

> It has been forever since I have written to all of you!

>

> I have been keeping up with all the posts...most of them anyway!

>

> I am the QUEEN of side effects for those who do not know me!

>

> Dr. Druker considered me " transfusion dependent! " He was not happy

> with everything I was experiencing. After the ninth transfusion, he

> requested through Novartis that my gleevec PK level be taken. I

> began at 600 mg and had lowered the dosage myself with Dr. Druker's

> blessings after about one year and 4 months or so, to 400 mg. I had

> every reaction to Gleevec EXCEPT the rash!

>

> When the Gleevec PK level came back, I was at a toxic state! I was

> at 3100 nl...anything in the 500 to 700 range is acceptable...not

> 3100!!!

>

> To make a long story short, I am now on 250 mg. once a day!

>

> Most of my side effects are at bay. I still, on 250 mg, get

> occasional eye bleeds. Everyone is different. however, I remember

> Dr. Druker explaining my husband and I that there are other options

> out there. Dr. Druker was thinking about switching me toe Sprycel

> and decided against it. He wanted to try the dosage reduciton first.

> He said he did not want to use up an avenue until we exhausted the

> Gleevec avenue first thoroughly. He is a smart man...I am still on

> Gleevec and quality of life comes first...Dr. Druker maintains that,

> too! We are thrilled that I can take a lower dose of Gleevec and

> still maintain the 500 nl range.

>

> Everyone reacts differently. I was written up in Blood magazine by

> Dr. Druker (of course, they do not use names in the magazine) but Dr.

> Druker told me about it and I secured a copy from Blood magazine in

> pdf format.

>

> When you go to a specialist, they do know what they are doing!!!

>

> As for bone pain and oxo...if the discomfort goes away, you do not

> become dependent on a narcotic drug...it just minimizes the

> discomfort.

>

> Muscle spasms, they can be caused by potassium deficiency but in my

> case, Gleevec was robbing my body of calcium. I now take 2250 mg of

> calcium (Citrical PLUS)a day. Most of the spasms are controlled.

> However, I noticed that when I do not drink enough water-the spasms

> like to kick up a storm!

>

> Glad to be writing, kicking and being alive!

>

> Hugs,

>

> 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!

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 468 9926 (cell)

marcospg@...

montereyunderwater@...

www.stanford.edu/~marcospg/