RE: Re:Question for all you professional PCR interpreters!!!! Help- ...

January 25, 2008

That was an excellent post. Thank you for sharing your experience.

In my mind, that is the best thing about this board, sharing our own

hard learned lessons about CML, Oncology, Labs, Side Effects and

everything that goes with it..

And for the record, I have had a very similar experience.

With warm regards,

Matt

ville, FL

DX January 2005

Gleevec March 2005

Tasigna November 2008

In a message dated 1/25/2008 11:44:47 A.M. Eastern Standard Time,

lmartinez@... writes:

Hi ,

I have to tell you hat happened to me last year.

First - My oncologist has always used Genzyne Genetics. Great facility they

have always had the best equipment in their facilities but obviously

technology changes and at the end of 2006 they upgraded to the latest and

greatest Now even though I had always had a 4 log reduction with them (First

one done 60 days after starting gleevec 400mmgs) when I had my annual biopsy

in March 2007, my PCR came back slightly higher.

My Oncologist was pretty paranoid and I think it was due to the fact that I

have done so well over the years he was scared that I may have started

showing some resistance to Gleevec after the 5 years I had been on it.

He immediately wanted to increase my gleevec, and I had explained to him

that my theory is that they just implemented much more sensitive equipment

in their facility so there is a strong possibility that it was always

somewhere close to that very number but that the old equipment was not as

sensitive.

Because he wasn't aware of their upgrade he called and confirmed and he also

spoke to the Head Oncologist at the Local Cancer Center here and everyone

agreed with me that there is no reason to increase my gleevec as I still had

a 4 log reduction regardless of the slight number increase.

With that we agreed to watch for a trend and so far so good.

What's funny is I also go to the local Cancer center here even though I have

not been there in the past year and the lab that they use is always

undetectable and so did Lab Corp. when we did my peripheral blood PCR test.

We decided that they do not have very sensitive equipment and would stick

with the Genzyne Genetics who appear to be one of if not the best in the

country.

I no longer waste my time with Lab Corp- I have my PCR blood test done at

the hospital and it is mailed overnight to Genzyne so that we can use the

same facilities. As for the local cancer center here I worry for the

patients who use theirs as a baseline and follow it.

I tell you this story because it is possible that the lab they were using

may not have been as accurate as we assumed and I know we all wish for them

to be standardized one day.

This is your second PCR on Spyrcel and if it better than what you had

obtained on Gleevec than please stay positive and maybe try to find out from

your Doctor a little bit more about the changes the lab has made or what the

difference is I the one they used to use and the new one.

As for the nurse, I am sure you already know that some of them assume we are

so ignorant. It can be pretty frustrating knowing that they are suppose to

be medical professionals too, but I think we know more than them any day:-)

I hope my story helps some- in the least please know that if it is correct

that your PCR could have been higher before but not detected, isn't it great

to know now as oppose to never knowing what's real. This will obviously

Give you a clear picture of where you are now and where you want to be.

I know it's scary to think that it could be getting worse but I bet that's

not the case here.

And consider all who are using Lab Corp and places that really don't have

such good sensitive equipment.

My prayers are with you and your worry. Stay strong and focus on the

possible positives!

ez

[Non-text portions of this message have been removed]

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

January 25, 2008

Then darn it all, it is off to Ottawa for us all. It would be

nice to get some good news now and again.

With warm regards,

Matt

ville, FL

DX January 2005

Gleevec March 2005

Tasigna November 2008

In a message dated 1/25/2008 1:11:57 P.M. Eastern Standard Time,

zmiller@... writes:

HI ,

Thank you for a great post. My experience exactly.

If I would ever need a pick-me-up about my CML, all I have to do is have my

PCR tested in Ottawa or Montreal and it will come back as PCRU.

Zavie

Zavie (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

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

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.2 log reduction Jun/07

3.6 log reduction Sep/07

e-mail: _zmiller@..._ (mailto:zmiller@...)

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-202-0204

ID: zaviem

_____

From: _@..._ (mailto: )

[mailto:_@..._ (mailto: ) ] On Behalf Of

ez

Sent: January 25, 2008 11:37 AM

_@..._ (mailto: )

Subject: [ ] Re:Question for all you professional PCR interpreters!Sub

Help- long post sorry