RE: No replies?????

[Guest guest]

Hii am a pt at mdacc as well.

It is QPCR and they are working with international labs all over to standardize

the testing for bcrabl with the pcr test done in a standardized way. If all

your tests are at mdacc then the results are comparable. It's more difficult to

gauge success on a drug when peoples pcr tests are done at several different

labs.

It looks as though you are doing well and having a great response. Im no

doctor, but it sounds like you have lots to celebrate on your cruise. I am

jealous for sure!

Rhonda

Sent from my Verizon Wireless BlackBerry

[ ] No replies?????

I posted this last week and got NO REPLIES, OK I dont post often but

no replies at all???????????

Hi there everyone, long time no post.... I check the posts at least 2

times a day on my phone so I know how you all are but I have not

figured out yet how to reply on my phone.

I recently got my most recent BCR/ABL results and I understand I am

doing well but apparently my Oncologist told me MDACC are using this

new system of testing so here is how my results have gone tell me what

you think.

Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you

were at 100% on May 24, 2007

November 2007 11.10%

April 2008 6.8%

Aug 2008 6.4%

In August I gave up eating meat and started going to the Gym 4-5 times

a week.

Oct 2008 1.9%

I haven't posted on the CML weight loss site as I have not really lost

any weight but I have lost inches and my energy level has zoomed.

Next week my Husband and I are going on a cruise, the first time we

have been away without the children in over 20 years!

Please let me know if anyone understands what the name of this new

testing is.

Regards Donna--- In , ROBERTA DOYLE <rcd1929@...>

wrote:

>

> Hi, I had an appointment with Dr. Butt (not his real name of

course)  and he was in terrible pain due to a pinched nerve, therefore

he was very nice, guess it takes a little pain to humble a person. 

anyway, he said I only have to see him once a year, this keeps me

getting my labs done there, and saves me from looking for a new

doctor.  Eventually I will find one that I really like, but in the

meantime I do not need a local onc as I see Dr. Talpaz almost every

week.  I go to Ann Arbor  tomorrow, boo hiss, but on a happy note will

get to see Len and Ernie.

> That's it for now, everyone behave, stay on your diets,  Bobby

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

> 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

> #840  -   Zavie's Zero Club

> 09/2006 -  out of CCR

> 04/29/08 - XL228 Trial/ U.of Michigan

> 06/02/08 - CCR ( in 4 weeks)

>  

>

>

[Guest guest]

Sorry Donna, I still have to ask my dr. what the tests mean.  I have no idea

what MDACC testing is, new or old.  But it sounds like you are doing great, keep

it up, I'm sure tracey or Zavie will pitch in here with an explanation of the

results.  Bobby

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

From: donnaberry99 <no_reply >

Subject: [ ] No replies?????

Date: Monday, November 10, 2008, 9:25 AM

I posted this last week and got NO REPLIES, OK I dont post often but

no replies at all????????? ??

Hi there everyone, long time no post.... I check the posts at least 2

times a day on my phone so I know how you all are but I have not

figured out yet how to reply on my phone.

I recently got my most recent BCR/ABL results and I understand I am

doing well but apparently my Oncologist told me MDACC are using this

new system of testing so here is how my results have gone tell me what

you think.

Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you

were at 100% on May 24, 2007

November 2007 11.10%

April 2008 6.8%

Aug 2008 6.4%

In August I gave up eating meat and started going to the Gym 4-5 times

a week.

Oct 2008 1.9%

I haven't posted on the CML weight loss site as I have not really lost

any weight but I have lost inches and my energy level has zoomed.

Next week my Husband and I are going on a cruise, the first time we

have been away without the children in over 20 years!

Please let me know if anyone understands what the name of this new

testing is.

Regards Donna--- In groups (DOT) com, ROBERTA DOYLE <rcd1929@... >

wrote:

>

> Hi, I had an appointment with Dr. Butt (not his real name of

course)  and he was in terrible pain due to a pinched nerve, therefore

he was very nice, guess it takes a little pain to humble a person. 

anyway, he said I only have to see him once a year, this keeps me

getting my labs done there, and saves me from looking for a new

doctor.  Eventually I will find one that I really like, but in the

meantime I do not need a local onc as I see Dr. Talpaz almost every

week.  I go to Ann Arbor  tomorrow, boo hiss, but on a happy note will

get to see Len and Ernie.

> That's it for now, everyone behave, stay on your diets,  Bobby

>

>

> a (Bobby) Doyle

> Brecksville, Ohio, USA

> DX 05/1995

> 02/2000 - Gleevec Trial/OHSU

> 06/2002 - Gleevec/Trisenox Trial/OHSU

> 06/2003 - Gleevec/Zarnestra Trial/OHSU

> 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

> #840  -   Zavie's Zero Club

> 09/2006 -  out of CCR

> 04/29/08 - XL228 Trial/ U.of Michigan

> 06/02/08 - CCR ( in 4 weeks)

>  

>

>

[Guest guest]

Hi Donna,

Sorry for the delay in responding. I'm not sure why you were told

this is " new " testing as it looks like standard PCR results to me.

Also, it shouldn't matter that you didn't have a PCR when you were

diagnosed, most of us didn't. The lab should have a standard value

that they use to calculate a base line figure which is then used to

determine the log reduction.

Have you had a BMB since diagnosis? If not, I would definitely ask

for one. It looks to me from your results that you've had about a 1

log reduction since your first test which is in the right direction.

The only way to get a definitive picture of what's going on at this

point is with a BMB. What you really want to know is if you've

achieved a CCR yet and by these PCR results it's hard to tell.

Hope that helps,

Tracey

> >

> > Hi, I had an appointment with Dr. Butt (not his real name of

> course)  and he was in terrible pain due to a pinched nerve,

therefore

> he was very nice, guess it takes a little pain to humble a person. 

> anyway, he said I only have to see him once a year, this keeps me

> getting my labs done there, and saves me from looking for a new

> doctor.  Eventually I will find one that I really like, but in the

> meantime I do not need a local onc as I see Dr. Talpaz almost every

> week.  I go to Ann Arbor  tomorrow, boo hiss, but on a happy note

will

> get to see Len and Ernie.

> > That's it for now, everyone behave, stay on your diets,  Bobby

> >

> >

> > a (Bobby) Doyle

> > Brecksville, Ohio, USA

> > DX 05/1995

> > 02/2000 - Gleevec Trial/OHSU

> > 06/2002 - Gleevec/Trisenox Trial/OHSU

> > 06/2003 - Gleevec/Zarnestra Trial/OHSU

> > 04/2004 - Sprycel Trial/MDACC, CCR in 10 months

> > #840  -   Zavie's Zero Club

> > 09/2006 -  out of CCR

> > 04/29/08 - XL228 Trial/ U.of Michigan

> > 06/02/08 - CCR ( in 4 weeks)

> >  

> >

> >

[Guest guest]

I used to got MDACC however I change lst year and my doctor commented that MDACC

used an old style of lab protocol, so maybe the change wasthat they are using

more current protocol. Having said that, it looks like are reporting them the

samw old way.

I have questioned this, I was never PCRU at MDACC however I was PCRU at my

current facility after switching to Tasignas after 30 days. Which led me to

believe that MDACC had more stringent testing.

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

mtmaynor@...

904-219-9108

[ ] No replies?????

I posted this last week and got NO REPLIES, OK I dont post often but

no replies at all???????????

Hi there everyone, long time no post.... I check the posts at least 2

times a day on my phone so I know how you all are but I have not

figured out yet how to reply on my phone.

I recently got my most recent BCR/ABL results and I understand I am

doing well but apparently my Oncologist told me MDACC are using this

new system of testing so here is how my results have gone tell me what

you think.

Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you

were at 100% on May 24, 2007

November 2007 11.10%

April 2008 6.8%

Aug 2008 6.4%

In August I gave up eating meat and started going to the Gym 4-5 times

a week.

Oct 2008 1.9%

I haven't posted on the CML weight loss site as I have not really lost

any weight but I have lost inches and my energy level has zoomed.

Next week my Husband and I are going on a cruise, the first time we

have been away without the children in over 20 years!

Please let me know if anyone understands what the name of this new

testing is.

Regards Donna

>

> Hi, I had an appointment with Dr. Butt (not his real name of

course)  and he was in terrible pain due to a pinched nerve, therefore

he was very nice, guess it takes a little pai

[The entire original message is not included]=

[Guest guest]

Hi Matt,

If I want to bury my head in the sand I would get my PCR testing done at the

lab here in Ottawa. It always comes back as PCRU. I choose to have my

testing done at a lab in Toronto and you can see the results in my

signature. One should try and find a lab that does a very sensitive PCR test

and always get your testing done there. Hopefully they don't change their

procedure and then you can compare results to see the trend.

The worst/best result I ever had was a PCR test done at the RVH in Montreal

in 2002. It came back as PCRU. I assume that they have upgraded their

equipment since then.

I just can't wait until PCR testing and reporting becomes standardized.

Zavie

Zavie (age 70)

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

3.6 log reduction Apr/08

3.6 log reduction Sep/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of Matt

Maynor

Sent: November 10, 2008 11:58 AM

Subject: RE: [ ] No replies?????

I used to got MDACC however I change lst year and my doctor commented that

MDACC used an old style of lab protocol, so maybe the change wasthat they

are using more current protocol. Having said that, it looks like are

reporting them the samw old way.

I have questioned this, I was never PCRU at MDACC however I was PCRU at my

current facility after switching to Tasignas after 30 days. Which led me to

believe that MDACC had more stringent testing.

With warm regards,

Matt Maynor

8132 Hollyridge Road

ville, FL 32256

mtmaynoraol (DOT) <mailto:mtmaynor%40aol.com> com

904-219-9108

[ ] No replies?????

I posted this last week and got NO REPLIES, OK I dont post often but

no replies at all???????????

Hi there everyone, long time no post.... I check the posts at least 2

times a day on my phone so I know how you all are but I have not

figured out yet how to reply on my phone.

I recently got my most recent BCR/ABL results and I understand I am

doing well but apparently my Oncologist told me MDACC are using this

new system of testing so here is how my results have gone tell me what

you think.

Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you

were at 100% on May 24, 2007

November 2007 11.10%

April 2008 6.8%

Aug 2008 6.4%

In August I gave up eating meat and started going to the Gym 4-5 times

a week.

Oct 2008 1.9%

I haven't posted on the CML weight loss site as I have not really lost

any weight but I have lost inches and my energy level has zoomed.

Next week my Husband and I are going on a cruise, the first time we

have been away without the children in over 20 years!

Please let me know if anyone understands what the name of this new

testing is.

Regards Donna--- In groups (DOT) <mailto:%40> com,

ROBERTA DOYLE <rcd1929@...>

wrote:

>

> Hi, I had an appointment with Dr. Butt (not his real name of

course) and he was in terrible pain due to a pinched nerve, therefore

he was very nice, guess it takes a little pai

[The entire original message is not included]=

[Guest guest]

I have always suspected the same thing.? Thank you

for clarifying that Zavie.

Matt

Florida's CML Captain

[ ] No replies?????

I posted this last week and got NO REPLIES, OK I dont post often but

no replies at all???????????

Hi there everyone, long time no post.... I check the posts at least 2

times a day on my phone so I know how you all are but I have not

figured out yet how to reply on my phone.

I recently got my most recent BCR/ABL results and I understand I am

doing well but apparently my Oncologist told me MDACC are using this

new system of testing so here is how my results have gone tell me what

you think.

Upon DX I didnt have a BCR/ABL so my Oncologist says lets presume you

were at 100% on May 24, 2007

November 2007 11.10%

April 2008 6.8%

Aug 2008 6.4%

In August I gave up eating meat and started going to the Gym 4-5 times

a week.

Oct 2008 1.9%

I haven't posted on the CML weight loss site as I have not really lost

any weight but I have lost inches and my energy level has zoomed.

Next week my Husband and I are going on a cruise, the first time we

have been away without the children in over 20 years!

Please let me know if anyone understands what the name of this new

testing is.

Regards Donna--- In groups (DOT) <mailto:%40> com,

ROBERTA DOYLE <rcd1929@...>

wrote:

>

> Hi, I had an appointment with Dr. Butt (not his real name of

course) and he was in terrible pain due to a pinched nerve, therefore

he was very nice, guess it takes a little pai

[The entire original message is not included]=