Re: 5mos. on Gleevec -- FISH at 87%

[Guest guest]

Hi ,

Although I don't know the answers to your questions I wanted to let

you know that you are not alone in worrying about the numbers game. I

posted earlier regarding the FISH results. My husband was diagnosed

with CML in July 2006. His initial WBC was 241. Huge Spleen no other

symptoms. He has responded well to the Gleevec therapy but we also

still worry about all the results. Every month a new test!!! I guess

what I read in all these posts is reassuring. The bottom line is to

be comfortable with your oncologist and continually do research on

your own. Even though the answers can be scary, all in all I find I

sleep better at night after reading all the positive posts here. Good

luck!!!!

>

> I have alot of questions for all of you. At 42 I was dxd in Oct 2006

> abd started 400mg Gleevec. WBC was at 381K at diagnosis. After 6

> weeks on Gleevec WBC normalized (fluctuates between 6 -12K). My

> question - is it suprising or NOT for my FISH to come back at 87%?

> My Dr seemed quite surprised at that number, he expected to see a

> bigger change, although they have not done o FISH on me until this

> time. The indication was given at diagnosis that with a WBC so high a

> FISH would certainly be 100%. Wouldn't a theoretical drop of

> only 13% be quite disappointing?

> Is there a need to be alarmed? Should I insist on an increase in the

>

Gleevec (dr did say that in MAY they will retest and do PCR and if %

> has not changed significantly would increase to 800mg) -- should

> increase be aggressive or moderate (600mg vs. 800mg)?

> What are the findings on someone with WBC so at diagnosis? Is it more

> difficult and a longer process to see a favorable result? Is the

> prognosis less promising?

> Things just seemed so promising on the surface with the earlier

> superficial testing. Now I am just so discouraged and frightened

> right now. Am I just expecting too much too soon?

> Until my spleen begin hurting in October (which eventually lead to the

> dx) I have felt fine. Oh yeah -- and the 40 lbs that I seemed to drop

> effortlessly over about a 5 month period. I have not felt nor looked

> " sick " . People don't seem to actually believe I am sick -- " people

> with cancer waste away " -- I am still over weight! The reality is the

> initial dx was scary, but now the scariest thing is that so early in

> the game I may have to really get down and dirty with this leukemia.

> The outlook my Dr presented at my diagnosis is not holding up its end

> of the 'bargin " .

> I am scared, worried, frustrated, confused, angry, lonely, and

> exhausted.

> Thanks in advance --

> Tracey

>

[Guest guest]

Hi Tracey,

First thing is first, there's no reason to panic. Even if it turns

out that Gleevec isn't working well enough for you, there are a

number of other options out there for you. I can't even count how

many drugs are in trials right now and there's also Sprycel that is

already approved (in the US) for use in people who haven't responded

to Gleevec.

It does look like it's taking you longer than it should to respond to

the 400mg of Gleevec if you've only gone done to 87% in roughly 5

months of treatment but like I said, there are many other options

open to you.

Your white count on diagnosis actually doesn't have much of a factor

in the way you respond to any particular drug treatment. In fact,

it's not even predictive of what phase of CML you're in. I've seen

patients with a white count of less than 20K who were in blast crisis

and I've seen patients with a white count of 500K who were in early

chronic phase.

A more predictive count of what phase you're in is your blast count

and your basophil count also plays a role. A more predictive factor

of how you will respond to Gleevec is what state your marrow was in

when you were diagnosed. You would only know this from a bone marrow

biopsy/aspiration report. Did you have any other chromosomal

abnormalities when you were diagnosed?

You could also ask your doctor if he can do mutations testing to see

if you have a particular mutation that Gleevec doesn't do well with

but the other drugs do.

If you're tolerating the 400mg very well, I would ask him if you

could increase to 800mg to see if you can get a better response.

Given the fact that you've been on 400mg for close to 6 months and

you haven't achieved a major response yet, it seems like a reasonable

request to me.

Bottom line is don't panic, there are many things you can do from

here and you're certainly not alone.

Take care,

Tracey

dx Jan 2002

>

> I have alot of questions for all of you. At 42 I was dxd in Oct

2006

> abd started 400mg Gleevec. WBC was at 381K at diagnosis. After 6

> weeks on Gleevec WBC normalized (fluctuates between 6 -12K). My

> question - is it suprising or NOT for my FISH to come back at

87%?

> My Dr seemed quite surprised at that number, he expected to see a

> bigger change, although they have not done o FISH on me until this

> time. The indication was given at diagnosis that with a WBC so

high a

> FISH would certainly be 100%. Wouldn't a theoretical drop of

> only 13% be quite disappointing?

> Is there a need to be alarmed? Should I insist on an increase in

the

> Gleevec (dr did say that in MAY they will retest and do PCR and if %

> has not changed significantly would increase to 800mg) -- should

> increase be aggressive or moderate (600mg vs. 800mg)?

> What are the findings on someone with WBC so at diagnosis? Is it

more

> difficult and a longer process to see a favorable result? Is the

> prognosis less promising?

> Things just seemed so promising on the surface with the earlier

> superficial testing. Now I am just so discouraged and frightened

> right now. Am I just expecting too much too soon?

> Until my spleen begin hurting in October (which eventually lead to

the

> dx) I have felt fine. Oh yeah -- and the 40 lbs that I seemed to

drop

> effortlessly over about a 5 month period. I have not felt nor

looked

> " sick " . People don't seem to actually believe I am sick -- " people

> with cancer waste away " -- I am still over weight! The reality is

the

> initial dx was scary, but now the scariest thing is that so early in

> the game I may have to really get down and dirty with this leukemia.

> The outlook my Dr presented at my diagnosis is not holding up its

end

> of the 'bargin " .

> I am scared, worried, frustrated, confused, angry, lonely, and

> exhausted.

> Thanks in advance --

> Tracey

>

[Guest guest]

Tracey --

thanks for such a quick reply.

Yes my Dr (whom I have been told is one of the best in the Atlanta

area and is a Hemo/Onc specialist)did a BMB and was able to determine

that the only chromosomal abnormality was the usual 9/22

translocation. He indicated at the diagnosis stage that when he took

a prileminary look under the scope that he saw very few blast cells

and felt like I was certainly in the chronic phase of the disease,

however I had probably been working with CML for quite a while based

on my description of how fatigued I had been for the last two years or

so. I had had this SAME discussion with my primary dr for the last

several months prior to CML and still no CBC until there was such a

problem as to necessitate the obvious testing!!!

I am trusting that if any of this information that my dr gave me 5 mos

ago had changed with the testing -- surely he would have told me.

Make no mistake about THIS -- I don't think I will be waiting until

May to see him again!! I have many questions and and need to know

exactly where I go from here and how much time I give this before I go

for the " big guns " -- meaning consulting with the absolute BEST in

this field.

Thanks again -- Tracey (ATL)

> >

> > I have alot of questions for all of you. At 42 I was dxd in Oct

> 2006

> > abd started 400mg Gleevec. WBC was at 381K at diagnosis. After 6

> > weeks on Gleevec WBC normalized (fluctuates between 6 -12K). My

> > question - is it suprising or NOT for my FISH to come back at

> 87%?

> > My Dr seemed quite surprised at that number, he expected to see a

> > bigger change, although they have not done o FISH on me until this

> > time. The indication was given at diagnosis that with a WBC so

> high a

> > FISH would certainly be 100%. Wouldn't a theoretical drop of

> > only 13% be quite disappointing?

> > Is there a need to be alarmed? Should I insist on an increase in

> the

> > Gleevec (dr did say that in MAY they will retest and do PCR and if %

> > has not changed significantly would increase to 800mg) -- should

> > increase be aggressive or moderate (600mg vs. 800mg)?

> > What are the findings on someone with WBC so at diagnosis? Is it

> more

> > difficult and a longer process to see a favorable result? Is the

> > prognosis less promising?

> > Things just seemed so promising on the surface with the earlier

> > superficial testing. Now I am just so discouraged and frightened

> > right now. Am I just expecting too much too soon?

> > Until my spleen begin hurting in October (which eventually lead to

> the

> > dx) I have felt fine. Oh yeah -- and the 40 lbs that I seemed to

> drop

> > effortlessly over about a 5 month period. I have not felt nor

> looked

> > " sick " . People don't seem to actually believe I am sick -- " people

> > with cancer waste away " -- I am still over weight! The reality is

> the

> > initial dx was scary, but now the scariest thing is that so early in

> > the game I may have to really get down and dirty with this leukemia.

> > The outlook my Dr presented at my diagnosis is not holding up its

> end

> > of the 'bargin " .

> > I am scared, worried, frustrated, confused, angry, lonely, and

> > exhausted.

> > Thanks in advance --

> > Tracey

> >

>

[Guest guest]

Hi Tracey,

Welcome to the club that nobody really wants to be a member of.

You ask the question " how soon do I go for the big guns? "

My answer is that you have already waited to long. This is your life. You

deserve the best. Nothing less will do. As quick as possible is my answer.

The CML experts will do a PCR test right at diagnosis time. This will give

them a basis to compare all subsequent PCR tests.

I would request a copy of all the tests that he had done so far. A statement

that he saw very few blasts is not good enough. It should have been

measured, e.g. 1%, 2%, etc.

Gleevec works really well in 85% of the cases. Sometimes it takes longer to

work in some patients. We call these people " turtles " .

I hope this helps,

Zavie

Zavie (age 68)

67 Shoreham Avenue

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

PCRU 5/02 at RVH

2.8 log reduction Sep/05

3.0 log reduction Jan/06

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

[ ] Re: 5mos. on Gleevec -- FISH at 87%

Tracey --

thanks for such a quick reply.

Yes my Dr (whom I have been told is one of the best in the Atlanta

area and is a Hemo/Onc specialist)did a BMB and was able to determine

that the only chromosomal abnormality was the usual 9/22

translocation. He indicated at the diagnosis stage that when he took

a prileminary look under the scope that he saw very few blast cells

and felt like I was certainly in the chronic phase of the disease,

however I had probably been working with CML for quite a while based

on my description of how fatigued I had been for the last two years or

so. I had had this SAME discussion with my primary dr for the last

several months prior to CML and still no CBC until there was such a

problem as to necessitate the obvious testing!!!

I am trusting that if any of this information that my dr gave me 5 mos

ago had changed with the testing -- surely he would have told me.

Make no mistake about THIS -- I don't think I will be waiting until

May to see him again!! I have many questions and and need to know

exactly where I go from here and how much time I give this before I go

for the " big guns " -- meaning consulting with the absolute BEST in

this field.

Thanks again -- Tracey (ATL)

> >

> > I have alot of questions for all of you. At 42 I was dxd in Oct

> 2006

> > abd started 400mg Gleevec. WBC was at 381K at diagnosis. After 6

> > weeks on Gleevec WBC normalized (fluctuates between 6 -12K). My

> > question - is it suprising or NOT for my FISH to come back at

> 87%?

> > My Dr seemed quite surprised at that number, he expected to see a

> > bigger change, although they have not done o FISH on me until this

> > time. The indication was given at diagnosis that with a WBC so

> high a

> > FISH would certainly be 100%. Wouldn't a theoretical drop of

> > only 13% be quite disappointing?

> > Is there a need to be alarmed? Should I insist on an increase in

> the

> > Gleevec (dr did say that in MAY they will retest and do PCR and if %

> > has not changed significantly would increase to 800mg) -- should

> > increase be aggressive or moderate (600mg vs. 800mg)?

> > What are the findings on someone with WBC so at diagnosis? Is it

> more

> > difficult and a longer process to see a favorable result? Is the

> > prognosis less promising?

> > Things just seemed so promising on the surface with the earlier

> > superficial testing. Now I am just so discouraged and frightened

> > right now. Am I just expecting too much too soon?

> > Until my spleen begin hurting in October (which eventually lead to

> the

> > dx) I have felt fine. Oh yeah -- and the 40 lbs that I seemed to

> drop

> > effortlessly over about a 5 month period. I have not felt nor

> looked

> > " sick " . People don't seem to actually believe I am sick -- " people

> > with cancer waste away " -- I am still over weight! The reality is

> the

> > initial dx was scary, but now the scariest thing is that so early in

> > the game I may have to really get down and dirty with this leukemia.

> > The outlook my Dr presented at my diagnosis is not holding up its

> end

> > of the 'bargin " .

> > I am scared, worried, frustrated, confused, angry, lonely, and

> > exhausted.

> > Thanks in advance --

> > Tracey

> >

>