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Re: going off Gleevec

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Sorry to hear that your husband is unable to tolerate Gleevec . I guess am

very fortunate, after reading all these horror stories on this site re. Gleevec.

I was diagnosed with CML over three years ago. They put me on 400mg of Gleevec,

and I have only minor problems with the drug i.e. occasional nausea or muscle

cramps at night in my calves. Other than that, my white count has maintained a

normal level since starting this med. I feel strong (I'm 63) always. Believe me,

I am not bragging, just very thankful! I wish your husband all the best and God

bless him!

@...: weez_555@...: Mon, 18 Jun 2007

20:54:21 +0000Subject: [ ] going off Gleevec

Well, my husband went off Gleevec for 4 weeks waiting for his liver to

" recover " (it was at 6x the normal toxicity rate). It did recover to the

" normal " range and he resumed Gleevec last week at a 300mg doseage (100 less

than his normal). He has been on 300mg of Gleevec for 7 days, and his liver shot

back up to 4x the toxicity rate...in just 7 days. It appears that he will have

to go off Gleevec due to these liver issues and onto Sprycel, although we are

awaiting a call from his doctor to discuss all of this...but we sort of already

discussed that if his liver did not " tolerate " Gleeevec, we would start looking

at Sprycel. We have an appt July 26th with Dr. Druker, and until then, will just

follow the directions of 's oncologist....He was only on Gleevec about 9

months all together and he felt quite well, so we are disappointed that he is in

the less than 5% of people who have to go OFF of it due to these liver issues.At

this point it does seem like this is a huge indication that his liver cannot

tolerate Gleevec--after having been off of it, his liver returning to normal,

then once Gleevec started again, his liver jumps back to high toxicity

levels....right? Has anyone else on this forum had these same type of

issues?Regards, Cerverawife of Cervera, age 34diagnosed 06/2006,

400mg/Gleevec__________________________________________________________Get a

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,

I don't think you were complaining at all. You were just worrying about

having to take the new step so soon and any one of us would have the same

concerns. Even me 7 yrs later! It's just the way the human mind works.

But once you think things through and find the positives as you and

have done, you just get on the bus and go with the plan that God has for you

and your family.

Ecclesiastes Chapter 3 (to everything there is a season)

It's hard to remember when you really need to, but you don't think this

group wasn't planned already too do you?

ez

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wrote:

Talked to the dr. yesterday and he wants to switch me to sprycel

because of the swelling and increase in pcr/fish. I am just

wondering if this is the right thing to do? I was hoping to get

more than 2 years out of gleevec. Any thoughts on this?

______________

Hi ,

Just like Marcos wrote to .....don't think of this as I have used up

one drug and am now going onto my 2nd drug. These are different drugs

(Sprycel and Gleevec) and one might work better for you than the other.

Sprycel does have some issues with fluid retention, so your onc will have

to monitor for that. Also, Sprycel is supposed to be about 300x more potent

than Gleevec.....because it binds better, and maybe that is what you need

to reach zero. Dr. Druker has told me personally that he can see a future

in which patients might use Sprycel 1st (because it should be more

effective) and then later switch to Gleevec. None of this is set in

stone....there are many options.

And /.....it is OK and expected for any newbies to have anxieties.

Us old timers did have 'rougher times' with interferon....that's for sure!

We would all love to be in the fairly large % of newly dx who have a

wonderful response to just 400mg Gleevec......but it does not always happen.

C.

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Hi ,

I've been thinking about over the last couple of weeks and

wondering how he was doing so thanks for updating us.

I'm so glad that Sprycel is an option for him. A couple of years ago,

it wouldn't have been. When you think of how far we've come in just 5

years, imagine how much farther we may go in another 5 years so don't

worry about running out of options any time soon. Lucky for us, it

seems that new options are popping up every day :)

Tracey

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Hi --

Thanks so much, always, for such uplifting words of advice.

It is simply the fear of the unknown that sometimes creeps up on us.

But, it is all in God's hands!

Thanks again,

>From: Cogan <ncogan@...>

>Reply-

>

>Subject: [ ] Re: going off Gleevec

>Date: Wed, 20 Jun 2007 17:15:10 -0700

>

> wrote:

>Talked to the dr. yesterday and he wants to switch me to sprycel

>because of the swelling and increase in pcr/fish. I am just

>wondering if this is the right thing to do? I was hoping to get

>more than 2 years out of gleevec. Any thoughts on this?

>______________

>Hi ,

>Just like Marcos wrote to .....don't think of this as I have used up

>one drug and am now going onto my 2nd drug. These are different drugs

>(Sprycel and Gleevec) and one might work better for you than the other.

>Sprycel does have some issues with fluid retention, so your onc will have

>to monitor for that. Also, Sprycel is supposed to be about 300x more potent

>than Gleevec.....because it binds better, and maybe that is what you need

>to reach zero. Dr. Druker has told me personally that he can see a future

>in which patients might use Sprycel 1st (because it should be more

>effective) and then later switch to Gleevec. None of this is set in

>stone....there are many options.

>

>And /.....it is OK and expected for any newbies to have anxieties.

>Us old timers did have 'rougher times' with interferon....that's for sure!

>We would all love to be in the fairly large % of newly dx who have a

>wonderful response to just 400mg Gleevec......but it does not always

>happen.

> C.

>

_________________________________________________________________

Get a preview of Live Earth, the hottest event this summer - only on MSN

http://liveearth.msn.com?source=msntaglineliveearthhm

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