What should I do now?

September 12, 2006

Okay here is my story:

In October 2003 I was diagnosed with CML PH+. In November I was

put

on Gleevec, 400 mg. In May of 2004 I changed doctors and he put me

on

800 mg. My blood work after that was okay still a little high, well,

right outside of the normal margins. I stayed on Gleevec till

January

of 2006. I started the trials for Sprycel in Jan. I was put on 100

mg

daily. My BMB's all along still showed the PH+. My recent results

were:

FISH:negative

Cytogenetic: 2 of 20

BCR/ABl: Positive

>From what I was told is that it didn't make sense to have 2 of 20

and

for the fish to be negative. She told me that they think that there

is

a chromosonal abnormality, and they were going to research it and I

have an appointment on the 25th. This was the first time a fish and

a

bcr/abl has been done. The BMB before this one was 11 of 20. So it

looks like there has been improvement, but it freaks me out now that

they are saying there is an abnormality. I am currently seeing a

local

oncologist and a specialist at Emory Medical Center in Atlanta. I

have

been type tested and have a 9 out of 10 match for unrelated BMT. My

local oncologist said " you won't survive a transplant " , so now I am

really worried.

Now here's the question.... Should I try and go to one of the

major

cancer centers for a second opinion on my choices? I thought about

trying to get into see Dr. Druker or Mauro. I have Medicare and

state

Medicaid. I just think that I need to try all choices before having

a

BMT.

I feel like I am running into brick walls. Please any advice.....

Thanks,

Germaine

age 29

dxd 10/2003

PS> I also posted this on Google Groups

September 12, 2006

Hi Germaine,

The FISH test isn't the most accurate test in the world and there

are errors with it. There are many variables that can affect the

FISH test....the type of cells analyzed, the stage of division, the

age of the sample etc. Many doctors don't even do FISH tests anymore

for these reasons. The BMB on the other hand, is accurate so if

you're going to believe one test, that's the test to believe.

You've shown a definite improvement over your last test (going from

11 positive cells to just 2) so it looks to me like you're on the

right path.

If you had any type of chromosomal abnormality, they would have seen

that in the BMB. Do you know if they found any? If not, I can't

see there being any problem with chromosomal abnormalities.

All in all, it sounds like you're going in the right direction.

Take care and let us know what they say on the 25th,

Tracey

--- In , " germaine_bengston " <the_bengstons@...>

wrote:

>

> Okay here is my story:

>

> In October 2003 I was diagnosed with CML PH+. In November I

was

> put

> on Gleevec, 400 mg. In May of 2004 I changed doctors and he put me

> on

> 800 mg. My blood work after that was okay still a little high,

well,

> right outside of the normal margins. I stayed on Gleevec till

> January

> of 2006. I started the trials for Sprycel in Jan. I was put on 100

> mg

> daily. My BMB's all along still showed the PH+. My recent results

> were:

> FISH:negative

> Cytogenetic: 2 of 20

> BCR/ABl: Positive

>

> >From what I was told is that it didn't make sense to have 2 of 20

> and

>

> for the fish to be negative. She told me that they think that

there

> is

> a chromosonal abnormality, and they were going to research it and

I

> have an appointment on the 25th. This was the first time a fish

and

> a

> bcr/abl has been done. The BMB before this one was 11 of 20. So it

> looks like there has been improvement, but it freaks me out now

that

> they are saying there is an abnormality. I am currently seeing a

> local

> oncologist and a specialist at Emory Medical Center in Atlanta. I

> have

> been type tested and have a 9 out of 10 match for unrelated BMT.

My

> local oncologist said " you won't survive a transplant " , so now I

am

> really worried.

> Now here's the question.... Should I try and go to one of the

> major

> cancer centers for a second opinion on my choices? I thought

about

> trying to get into see Dr. Druker or Mauro. I have Medicare and

> state

> Medicaid. I just think that I need to try all choices before

having

> a

> BMT.

> I feel like I am running into brick walls. Please any

advice.....

>

> Thanks,

> Germaine

> age 29

> dxd 10/2003

>

> PS> I also posted this on Google Groups

>

September 13, 2006

Hey Germaine:

I agree with . It does sound like you are going in a good direction. I

am seeing a oncologist in Stockbridge and have my transplant connection, if

needed, at Northside Hospital in Atlanta. My numbers in the fish are very

similar to yours. My fish is neg., I have 8 out of 20 in the cytogenetics and

BCR/ABL positive. Gleevec seems to be working right now, I am healthy enough

considering everything. I'm working more than full time plus raising a couple

of teenagers. A year ago I figured I would be in the middle of a transplant

right now. When I saw the Doctor at Northside he also told me I had another

chromosome abnormality but it seems that everything has stablized for now. I

would like to know how you are doing on the Sprycel. My Onc told me if / or

when I become Gleevec resistant that would be the next step for me. Are there

tremendous side effects and how big of dosage do you have to take?

Hang in there, we are all trying to do the same thing, have some quality of

life.

Therese Stone

Tracey <traceyincanada@...> wrote: