New drug to replace Glivec - disatinib

[Guest guest]

Hi there, I am 38 yrs old, writing from Melb Australia and was

diagnosed in Sept 05 with CML. Started at 400mg glivec and have

pursued alternative treatment in conjunction with glivec t'ment.

Meditation, acupuncture, chinese herbs, yoga, organic food, fresh

vege juices. I'm currently involved in a trial " 400mg vs 800mg

Glivec " to see which works best. Quite relieved I was put on 400mg

as I hate the fact I'm putting so many chemicals into my body

without really knowing what effect it's going to have long term on

the other organs. I've had considerable fatigue issues on glivec as

well as the puffy eyes, considerable wind (lovely, if you're out to

dinner somewhere...lol) etc but hasten to say overall, I am really

positive I can beat this. On the glivec, my results went to zero by

March06 but after that I went through enormous emotional upheaval,

hideous breakup etc and currently after the last bone marrow biopsy

in Feb07, the cells are sitting at 3%. Not as good as the zero I was

hoping for. But the dr is now advocating going onto this new drug

called disatinib. As it's far more potent, again I hate the idea of

all the chemicals but I was wondering if there's anyone else out

there who has been taking this and how they are finding it?

thanks, Stef

[Guest guest]

Stef-

Great attitude! I know what you mean about the chemicals as I started on

600mg and am currently on the 800mg. I was offered that trial at OSHU but I

felt 400mg was too low and 800mg was too high, little did I know I 'd end up on

the 800mg. But, I am happy to say I am doing fine and have reached the 3

log reduction last December. I am confident that you will find the drug and

dose that works best for your body. The positive attitude you have is an

important part.

I wanted to let you know about a web site that I look at sometimes to get

additional information or suggestions from other CMLers.

_www.newcmldrug.com/bms_discuss_ (http://www.newcmldrug.com/bms_discuss) .

Maybe this will be

beneficial for you.

Best of luck with the new drug if you take that road. Stay healthy.

34

CML 5/13/05

Gleevec 800 mg

Wife and mother of 3 (11,8,6)

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[Guest guest]

O!!! YIPPEE!!!

number 1046 in the Zero Club

Zavie

>

> Hi there, I am 38 yrs old, writing from Melb Australia and was

> diagnosed in Sept 05 with CML. Started at 400mg glivec and have

> pursued alternative treatment in conjunction with glivec t'ment.

> Meditation, acupuncture, chinese herbs, yoga, organic food, fresh

> vege juices. I'm currently involved in a trial " 400mg vs 800mg

> Glivec " to see which works best. Quite relieved I was put on 400mg

> as I hate the fact I'm putting so many chemicals into my body

> without really knowing what effect it's going to have long term on

> the other organs. I've had considerable fatigue issues on glivec

as

> well as the puffy eyes, considerable wind (lovely, if you're out

to

> dinner somewhere...lol) etc but hasten to say overall, I am really

> positive I can beat this. On the glivec, my results went to zero

by

> March06 but after that I went through enormous emotional upheaval,

> hideous breakup etc and currently after the last bone marrow

biopsy

> in Feb07, the cells are sitting at 3%. Not as good as the zero I

was

> hoping for. But the dr is now advocating going onto this new drug

> called disatinib. As it's far more potent, again I hate the idea

of

> all the chemicals but I was wondering if there's anyone else out

> there who has been taking this and how they are finding it?

>

> thanks, Stef

>