Re: Comments appreciated....

[Guest guest]

At 01:04 AM 3/2/06 -0500, you wrote:

> >From what I understand from the doctor is that if you skip or reduce the

>dose you have a risk of developing a resistance to the drug. I

>certainly don't

>want to risk that nor have I missed any doses thus far. I am just wondering

>if I would feel better on a lesser dose or if its too late to think about

>that since I am already on the 600mg? I I am responding well to

>the Gleevec and

>believe I am in cytogenic remission. (under 35%). Last testing showed 1

>out of 200 cells.

Hi ,

The goal of treatment is to have a 3 log reduction for the best chance of

not relapsing. So, that is the information that you want. When people do

get to a good level of response, doctors do decrease their dosage to lower

side effects. I think that Dr. Mauro wants to treat you aggressively

because of your 'young' age and I think I might remember that you had some

features of acceleration???? 600mg is that standard initial dose for

someone who is not early chronic phase.

Cytogenetic remission/response or CCR is actually zero from the cyto test.

It is MCR (major cyto response) that is 35% or less ph+. 1 out of 200 cells

would be your FISH.....which could actually be considered zero because

there are some false positives with FISH.

Mostly you would be concerned with PCR testing now.....and the 3 log

reduction.

You would not qualify for a BMS trial at this point (because I think you

are probably CCR).......but BMS drug should be approved soon.....and that

would be an option to see if you have fewer side effects on that drug than

with Gleevec. This is a much more potent drug, and should get you to a

lower PCR value sooner.

C.

[Guest guest]

Hi !

I just wanted to let you know that I also have CML and am a Mom of

two young daughters, age 6 and 9. I am 43 (I got a later start on

the kid front ;-).

I just wanted to say that I completely know how you feel about side

effects. It's hard enough having CML and the side effects and then

on top of everything else, trying to raise young children, all the

while. You can only do your best. Some days are better than others.

I'm sure you will agree. I just do more on the good days, and lay

low on the not so great ones. My girls have really stepped up to the

plate to help me out around the house etc, and have really matured

through my CML experience. They are turning out great!

I am on 400 mg and I still get side effects! I'm on lasix for the

water retention. I get the occasional bout with GI problems, but

mine have diminished, as time on Gleevec has gone on. Hopefully,

that will happen with you as well.

I would certainly discuss your dose with Dr. Mauro. Like

stated, I'm sure he just wants to get you to the best cyto repsonse

possible, and many times, that's with a higher dose.

You want to stick around as long as possible to see these kids grow

up. So, although it is difficult, just hang in there. Be good to

yourself and do good things for yourself. You have a big job getting

well and being a Mother and Spouse. I completely understand.

Best wishes and friendship from a fellow Mom with CML!

Lynn (Snickersunny)

Dx'd 12/03

400 mg Gleevec

>

> Hi gang-

>

> I have a concern that I wanted to run by the group and get some

opinions.

> Little background on me.

>

> Dx: CML 5/13/05. Gleevec 600 mg daily.

> 33 years old, married with 3 kids (10, 7, 5).

>

> My concern: I want to know what the consensus of opinion is on

reducing my

> dose to 400mg. Now, I would never do this without consulting my

Dr, Dr.

> Mauro, but wanted to get opinions of others in this group, whom I

respect. I

> suffer from many side effects from fatigue, nausea, hair turning

white, losing

> the pigmentation in my face, neuropathy at night in my hands,

fluid

> retention around my eyes, diarrhea, gastritis, etc.... Moreover,

I am greatly

> concerned with the amount of toxicity in my body that the drug is

doing to my

> organs. I feel like I am young and have a long time to take this

drug, I am just

> wondering what kind of damage this is doing to my insides. I do

however,

> realize that without this drug, I wouldn't be here for long and I

feel blessed

> to have it as an option. I don't not have a sibling match and I

have a rare

> HLA typing.

>

> From what I understand from the doctor is that if you skip or

reduce the

> dose you have a risk of developing a resistance to the drug. I

certainly don't

> want to risk that nor have I missed any doses thus far. I am just

wondering

> if I would feel better on a lesser dose or if its too late to

think about

> that since I am already on the 600mg? I I am responding well to

the Gleevec and

> believe I am in cytogenic remission. (under 35%). Last testing

showed 1

> out of 200 cells.

>

> I am just curious as to what others think and your opinions are

just that

> and would be appreciated greatly. I realize we are all individuals

and our

> treatments and responses are different but I would like to just get

your

> impressions of my personal situation. I know I am asking a real

self center

> question here but I am really struggling and need a little input.

>

> Well wishes to all of you!

> Hugs-

>

>

>

>

[Guest guest]

amen to that,

from chris in minn

[ ] Re: Comments appreciated....

Hi !

I just wanted to let you know that I also have CML and am a Mom of

two young daughters, age 6 and 9. I am 43 (I got a later start on

the kid front ;-).

I just wanted to say that I completely know how you feel about side

effects. It's hard enough having CML and the side effects and then

on top of everything else, trying to raise young children, all the

while. You can only do your best. Some days are better than others.

I'm sure you will agree. I just do more on the good days, and lay

low on the not so great ones. My girls have really stepped up to the

plate to help me out around the house etc, and have really matured

through my CML experience. They are turning out great!

I am on 400 mg and I still get side effects! I'm on lasix for the

water retention. I get the occasional bout with GI problems, but

mine have diminished, as time on Gleevec has gone on. Hopefully,

that will happen with you as well.

I would certainly discuss your dose with Dr. Mauro. Like

stated, I'm sure he just wants to get you to the best cyto repsonse

possible, and many times, that's with a higher dose.

You want to stick around as long as possible to see these kids grow

up. So, although it is difficult, just hang in there. Be good to

yourself and do good things for yourself. You have a big job getting

well and being a Mother and Spouse. I completely understand.

Best wishes and friendship from a fellow Mom with CML!

Lynn (Snickersunny)

Dx'd 12/03

400 mg Gleevec

>

> Hi gang-

>

> I have a concern that I wanted to run by the group and get some

opinions.

> Little background on me.

>

> Dx: CML 5/13/05. Gleevec 600 mg daily.

> 33 years old, married with 3 kids (10, 7, 5).

>

> My concern: I want to know what the consensus of opinion is on

reducing my

> dose to 400mg. Now, I would never do this without consulting my

Dr, Dr.

> Mauro, but wanted to get opinions of others in this group, whom I

respect. I

> suffer from many side effects from fatigue, nausea, hair turning

white, losing

> the pigmentation in my face, neuropathy at night in my hands,

fluid

> retention around my eyes, diarrhea, gastritis, etc.... Moreover,

I am greatly

> concerned with the amount of toxicity in my body that the drug is

doing to my

> organs. I feel like I am young and have a long time to take this

drug, I am just

> wondering what kind of damage this is doing to my insides. I do

however,

> realize that without this drug, I wouldn't be here for long and I

feel blessed

> to have it as an option. I don't not have a sibling match and I

have a rare

> HLA typing.

>

> From what I understand from the doctor is that if you skip or

reduce the

> dose you have a risk of developing a resistance to the drug. I

certainly don't

> want to risk that nor have I missed any doses thus far. I am just

wondering

> if I would feel better on a lesser dose or if its too late to

think about

> that since I am already on the 600mg? I I am responding well to

the Gleevec and

> believe I am in cytogenic remission. (under 35%). Last testing

showed 1

> out of 200 cells.

>

> I am just curious as to what others think and your opinions are

just that

> and would be appreciated greatly. I realize we are all individuals

and our

> treatments and responses are different but I would like to just get

your

> impressions of my personal situation. I know I am asking a real

self center

> question here but I am really struggling and need a little input.

>

> Well wishes to all of you!

> Hugs-

>

>

>

>