Re: Am I becoming resistant to Gleevec?

[Guest guest]

Thanks for the response. It is the neutrophils that are the problem. My

doctor told me he doesn¹t want me back on until the count is 1.5. Right now

I am sitting any where between 1.0-1.4.

Cam

On 11/2/06 1:48 PM, " Tracey " <traceyincanada@...> wrote:

>

>

>

>

> Hi Cam,

>

> Do you know which of your counts are too low? If it's your

> neutrophils, there is a drug called Neupogen that is often used to

> boost the neutrophils so that the patient can remain on Gleevec.

> Also, how low is low? Often low counts aren't an issue unless the

> neutrophils go below 1.0 and/or the platelets go below 50.

>

> Take care,

> Tracey

>

>

>> >

>> > Yesterday my doctor phoned me with my latest blood test results

> and my counts are still too

>> > low to go back on gleevec. It has been six weeks since I last took

> gleevec and I am kind of

>> > worried about it. My doctor told me the norm for being off gleevec

> was a month. He wants to

>> > see if the disease is progressing so I have to get another bone

> marrow biopsy this week. It

>> > has only been four months since my last one and I am not looking

> forward to it. I had to take

>> > a week off work. Has anyone out there been off this long? Does

> this mean I am probably

>> > resistant to gleevec?

>> >

>> > Thanks for your help

>> >

>> > Cam

>> >

>

>

>

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[Guest guest]

Hi Cam,

Do you know which of your counts are too low? If it's your

neutrophils, there is a drug called Neupogen that is often used to

boost the neutrophils so that the patient can remain on Gleevec.

Also, how low is low? Often low counts aren't an issue unless the

neutrophils go below 1.0 and/or the platelets go below 50.

Take care,

Tracey

--- In , " cjwilliams16 " <coralee.williams@...>

wrote:

>

> Yesterday my doctor phoned me with my latest blood test results

and my counts are still too

> low to go back on gleevec. It has been six weeks since I last took

gleevec and I am kind of

> worried about it. My doctor told me the norm for being off gleevec

was a month. He wants to

> see if the disease is progressing so I have to get another bone

marrow biopsy this week. It

> has only been four months since my last one and I am not looking

forward to it. I had to take

> a week off work. Has anyone out there been off this long? Does

this mean I am probably

> resistant to gleevec?

>

> Thanks for your help

>

> Cam

>

[Guest guest]

Hi Cam,

I don't know the significance of your low cou8nts on IM (Gleevec) except that

your body can't tolerate whatever dose you're on. However, I may be able to

help you out regarding your bone marrow biopsy. I, too, have terrible problems

with hip bone biopsies for various reasons. So, I get biopsies taken from my

sternum (breast bone). Only doctors who are certified and have had special

training to do this procedure can do it but you can probably find someone.

Perhaps even your doc can do it. It hurts a lot less though it is not painless.

Also, you won't have any trouble sitting! I haven't had any side effects at all

and after the initial pain of the biopsy it goes away and I haven't had any pain

at all even an hour later.

Also, I did lose my response to Gleevec and am now on Sprycel and am in a

clinical trial in land but my first indication that my response was slipping

was when I went from 0 FISH which I had for several years suddenly jumped to 4%.

Do you know about the website that has a Sprycel discussion group? Go to

www.newcmldrug.com then click on Sprycel Discussion. Lots of info from lots of

people.

L

[ ] Am I becoming resistant to Gleevec?

Yesterday my doctor phoned me with my latest blood test results and my counts

are still too

low to go back on gleevec. It has been six weeks since I last took gleevec and

I am kind of

worried about it. My doctor told me the norm for being off gleevec was a

month. He wants to

see if the disease is progressing so I have to get another bone marrow biopsy

this week. It

has only been four months since my last one and I am not looking forward to

it. I had to take

a week off work. Has anyone out there been off this long? Does this mean I am

probably

resistant to gleevec?

Thanks for your help

Cam

[Guest guest]

Hi Cam,

May I humbly suggest that you run (not walk) to a new doctor and

fast.

Your neutrophil count isn't low enough to go off of Gleevec, let

alone be off for so long. If it were below 1.0, most doctors would

have given you Neupogen before taking you off of Gleevec. Gleevec

can't work if you don't take it so most doctors will do everything

they can to keep you on it, even if it means adding another drug

like Neupogen.

I've been on Gleevec for almost 5 years, I've never been off it

since I started and my neutrophil count is rarely above

1.5....usually it hovers around 1.1-1.4.

Goodluck,

Tracey

dx Jan 2002

> >> >

> >> > Yesterday my doctor phoned me with my latest blood test

results

> > and my counts are still too

> >> > low to go back on gleevec. It has been six weeks since I last

took

> > gleevec and I am kind of

> >> > worried about it. My doctor told me the norm for being off

gleevec

> > was a month. He wants to

> >> > see if the disease is progressing so I have to get another

bone

> > marrow biopsy this week. It

> >> > has only been four months since my last one and I am not

looking

> > forward to it. I had to take

> >> > a week off work. Has anyone out there been off this long? Does

> > this mean I am probably

> >> > resistant to gleevec?

> >> >

> >> > Thanks for your help

> >> >

> >> > Cam

> >> >

> >

> >

> >

>

>

>

> This email has been scanned by Barracuda Network's Anti-Virus and

Spam Firewall.

>

>

>

[Guest guest]

Hi

I do not post much but in this case I thought I would.

My counts have been very very low ever since starting

Gleevec (IM). I am getting platelet transfusions

about once a week (single doner, they are looking for

HLA donor) and about once or twice month I get red

cells. This has been going on now for quite a while

months. The asked me to try AMN107, and we started

the drug after much much physical tests. EKG' before

taking the drug and every fifteen min after for a

couple of hours. Heart Wall motion study and BMB's

and lots and lots of blood tests. But after two weeks

on the new drug I ended in Hospital for a week one of

the side effect got me/ I am now off all drugs until

next week hopefully I go back on amn107 but if not

back to Gleevec. So I assume that low counts do not

mean a great deal when on either of these drugs. they

will take you off and on until you get use to them I

guess???? anyway still weak from my stay in the

Hospital and my wbc is still low 1.7 They gave me 8

units of platelets and one red cells and a bag of

potassium before I was discharged Friday.

--- cjwilliams16 <coralee.williams@...>

wrote:

> Yesterday my doctor phoned me with my latest blood

> test results and my counts are still too

> low to go back on gleevec. It has been six weeks

> since I last took gleevec and I am kind of

> worried about it. My doctor told me the norm for

> being off gleevec was a month. He wants to

> see if the disease is progressing so I have to get

> another bone marrow biopsy this week. It

> has only been four months since my last one and I am

> not looking forward to it. I had to take

> a week off work. Has anyone out there been off this

> long? Does this mean I am probably

> resistant to gleevec?

>

> Thanks for your help

>

> Cam

>

>

>

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