Re: to take or not to take

[Guest guest]

Hi,

I haven't posted in a while, so welcome to the group no one wanted to belong to,

but a great group it is. Yes your WBC is low but i think the ONC should have

waited maybe alittle bit longer so that the WBC can regulate itself. When i was

first diagnosed in March 2003, my doctor explained to me that my WBC can get low

but will regulate itself for my WBC did go to to 1.7 and then went back to 2

then 3...it fluctuates now from 3-5....maybe you should call yoru doctor. I do

know though that if your WBC stays very low on gleevec after a period of time

they may want to try something else...

Take care and let us know!!!

Penny

Ula <cosmicgoddess1@...> wrote:

Hello everyone,

I am on Gleevec since 29th of March and had my first Bloodsample taken

on 4th April. My Onco told me the following day that my Bloodcount is

normal.

I had another Bloodsample taken on 18th April and received a phonecall

from my Onco asking me to stop taking Gleevec until 26th April. He

asks for a Bloodsample on that day and to see him.

He explained that my current white bloodcount is to low, only 1.5

He says not to worry, that my bloodcells only need to recuperate for

the time being.

Has anyone else from the Group been advised from their Onco to stop

Gleevec for some time?

I dont have any more information at this stage but will ask my Onco

for some copies of the tests done so far.

Thank you for listening ;-)

" Newbie " Ula

[Guest guest]

Hi Ula:

Welcome to our group.

I too had to take a short Gleevec vacation after starting it. I was

kind of upset when the doctor told me to stop Gleevec but I got over

that. He told me that my bone marrow needed a chance to recover and

start producing the red blood cells and white blood cells, etc that

the leukemic and platelets had crowded out. My platelet count was

really high when I was diagnosed.

He watched my bloodwork very closely and I believe I went in every

week or every other week until it recovered.

K

[Guest guest]

Hi Ula,

Sorry to read of your diagnosis. What is your absolute neutrophils count

(ANC) and platelet count? In regards to the guidelines, if your platelet

counts drops below 50k and/or your ANC is below 1.0k it is recommended that

Gleevec treatment is stopped until your platelet count rises above 75k and

your absolute neutrophils count rise above 1.5k. If your blood counts

drops a second time the following guidelines are recommended, stop Gleevec

treatments if platelet count drops below 50k and/or ANC drops below 1.0k.

Since my diagnosis (09/04) I have been taken off Gleevec twice due to low

blood counts (low platelets or load absolute neutrophils counts). After

three months being treated at 400mg of Gleevec, my platelet count dropped to

19k. I was taken off Gleevec to one month until my platelet count improved

to 100k. In January 2005 I restarted treatment at 400mg until March 2005

when my absolute white count dropped to 644. As of April 19, 2005, my

absolute blood count is still below 1k so I have not restarted my

treatments. If my blood counts do not improve in the next week, I will be

given medication (such as, Neuprogen) to improve my blood counts so I can

restart my Gleevec treatments at 300mg.

As part of my initial consultation with my oncologist/hematologist, he had

warned me that during the first six months my Gleevec treatments could be

adjusted (either stopped or dosage reduced/increased).

I hope this information helps.

Take care and let us know how you are doing.

San Francisco, CA

Dx: 9/04

Gleevec: 10/04 400mg (on spring break)

CCR: still working on it

_____

From: [mailto: ] On Behalf Of Ula

Sent: Tuesday, April 19, 2005 2:19 AM

Subject: [ ] to take or not to take

Hello everyone,

I am on Gleevec since 29th of March and had my first Bloodsample taken

on 4th April. My Onco told me the following day that my Bloodcount is

normal.

I had another Bloodsample taken on 18th April and received a phonecall

from my Onco asking me to stop taking Gleevec until 26th April. He

asks for a Bloodsample on that day and to see him.

He explained that my current white bloodcount is to low, only 1.5

He says not to worry, that my bloodcells only need to recuperate for

the time being.

Has anyone else from the Group been advised from their Onco to stop

Gleevec for some time?

I dont have any more information at this stage but will ask my Onco

for some copies of the tests done so far.

Thank you for listening ;-)

" Newbie " Ula

_____

[Guest guest]

At 09:19 AM 4/19/05 +0000, you wrote:

>Hello everyone,

>

>I am on Gleevec since 29th of March and had my first Bloodsample taken

>on 4th April. My Onco told me the following day that my Bloodcount is

>normal.

>I had another Bloodsample taken on 18th April and received a phonecall

>from my Onco asking me to stop taking Gleevec until 26th April. He

>asks for a Bloodsample on that day and to see him.

>He explained that my current white bloodcount is to low, only 1.5

>He says not to worry, that my bloodcells only need to recuperate for

>the time being.

Hi Ula,

Actually this is usually thought to be a good sign that the drug is working

well for you. When you started Gleevec, if your ph+ was 100%, then most of

the cells in your marrow had the leukemia defect. The drug is killing off

these cells, and your white count drops low. Now the normal cells need to

repopulate the marrow. Your white count will probably come up in a short

time....but this is not unusual.

C.

[Guest guest]

Hi Ula,

My Onc did the same thing then the Liza's Onc . When my counts did the initial

drop to almost too low, my Onc agreed that instead of going off of Gleevec

completely we dropped it to 300 mgs one day then 200 mgs the next for a

couple of weeks. Then I went to 400 and 300 for a couple more weeks until it

stabilized .

Hope this help .

Emile

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