RE: Up and down!!!!!!!!!!!

[Guest guest]

Tasigna is supposed to be 30 times more

potent than Gleevec, and more refined.

Sent from my iPhone

On Jul 15, 2009, at 9:35 PM, " wendyphillips54 " <wendyphillips54@...

> wrote:

> I went today to have my wbc checked and it is UP again!!!! I am

> soooo frustated! When I fell last week and went to the ER, they

> checked it then and it was 28,000. That is the lowest it has been

> since I was dx with CML and I was excited. I thought, finally, it's

> working for me. Well today it is back up to 44,000. I just don't

> know what I'm doing wrong and it just really frustrates me. The Dr

> checked my Gleevec level today to see if my body is absorbing it. I

> go back on the 27th and he plans to switch me to Tasigna then. My

> question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work?

> I was dx in February and have not been in remission yet!!!!!!!

>

>

>

[Guest guest]

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6 mos.

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54@...>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it is

> back up to 44,000. I just don't know what I'm doing wrong and it just really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interferon/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hi Bobby and thanks so much for the info. I was just going by what my dingbat Dr

told me in SC....he said I should be in remission within 6 mths. I am not sure

if the Dr I am seeing right now is a CML specialist or not. The Dr I saw while I

was in the hospital was and I really liked him. The one I see now is his partner

but they work in different offices and towns. I'm not sure what CCR and MMR is.

I get all confused on all of the abbreviations and the meanings of everything. I

guess I just maybe misunderstood the Dr. I was just expecting to be in remission

by now and it's not happening but I won't expect that for quite some time now

since you told me all this. I WILL be having a long talk with my Dr on the 27th

and hope he can tell me why, what, when, where and how cause I am surely taking

me a book with a ton of questions for him and I won't leave until I get some

answers!!!

BLessings,

WEndy

From: Bobby Doyle <rmcd1929@...>

Subject: Re: [ ] Up and down!!!!!!!!!!!

Date: Thursday, July 16, 2009, 12:38 PM

 

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6 mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it is

> back up to 44,000. I just don't know what I'm doing wrong and it just really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hi , CHR - complete hematological remission

CCR - complete cytogenic remission

MMR - major molecular remission

There is a glossary of terms, I think, on Links, on the home page.  Check

it out, it should be very helpful to you and your doctor.

It takes a while to know all those terms, i still don't know them, so don't

worry, you'll get to know them soon enough.  Good luck, Bobby

ps - our good friend Lottie has never reached ccr, or mmr, and she has had cml

almost as long as me!  In fact I think she is still 100% ph.

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)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: Bobby Doyle <rmcd1929gmail (DOT) com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) com

Date: Thursday, July 16, 2009, 12:38 PM

 

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6 mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it is

> back up to 44,000. I just don't know what I'm doing wrong and it just really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hi ,

One thing that you want to do is get a copy of all your test results. You

don't have to be a rocket scientist to understand them. By just comparing

two sets of results you can easily see if you are improving, remaining

stable or getting worse.

As far as the acronyms are concerned, you can always look them up. The

better way is to ask on this list and someone will explain them to you.

OK - CCR means Complete Cytogenic Response. This happens when they do a BMB

or BMA and the results are 0/20. No evidence of the CML.

Now watch what happened. In order to explain what CCR meant, I had to

introduce two new acronyms. Now I have to define them.

BMB stands for Bone Marrow Biopsy and BMA stands for Bone Marrow Aspiration.

These are the tests they do when they sick that huge horse needle into your

hip and haul out some marrow for testing. So . what is the difference

between a BMA and a BMB? Both tests take out some marrow but the BMB test

also takes out a piece of bone. (It doesn't really but then we start to get

technical again).

Enough she screams!!! But I haven't told you what MMR is yet. Now I have to

be very careful and try to explain it in a simple way. This is difficult

because to do it right I have to bring in things like PCR test and you

really don't want to know what PCR stands for.

MMR means Major Molecular Response. This is a perfect place to be with your

CML. Once you achieve this level of remission there is virtually no chance

that you will ever relapse with your CML. Now to confuse you a lot more, if

you have achieved MMR it means that you have at least a 3 log reduction with

your CML. I mention this because you will come across the term 3 log

reduction. Simply, it means you are in MMR. To explain what a 3 log

reduction means, I will have to give you a course in mathematics.

One thing that will help you is to bring along a tape recorder with you.

Oops . they are now called digital recorders. Record the meeting and then

you won't miss anything or misunderstand what he said.

Good luck and report back after your meeting.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Sent: July 16, 2009 10:30 PM

Subject: Re: [ ] Up and down!!!!!!!!!!!

Hi Bobby and thanks so much for the info. I was just going by what my

dingbat Dr told me in SC....he said I should be in remission within 6 mths.

I am not sure if the Dr I am seeing right now is a CML specialist or not.

The Dr I saw while I was in the hospital was and I really liked him. The one

I see now is his partner but they work in different offices and towns. I'm

not sure what CCR and MMR is. I get all confused on all of the abbreviations

and the meanings of everything. I guess I just maybe misunderstood the Dr. I

was just expecting to be in remission by now and it's not happening but I

won't expect that for quite some time now since you told me all this. I WILL

be having a long talk with my Dr on the 27th and hope he can tell me why,

what, when, where and how cause I am surely taking me a book with a ton of

questions for him and I won't leave until I get some answers!!!

BLessings,

WEndy

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929%40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!!!!!

groups (DOT) <mailto:%40> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Zavie

That was GREAT!! Like a refresher course in CML.

What would we do without you.

Sharon T

# 878 in your club

_____

From: [mailto: ] On Behalf Of Zavie

Sent: Thursday, July 16, 2009 8:39 PM

Subject: RE: [ ] Up and down!!!!!!!!!!!

Hi ,

One thing that you want to do is get a copy of all your test results. You

don't have to be a rocket scientist to understand them. By just comparing

two sets of results you can easily see if you are improving, remaining

stable or getting worse.

As far as the acronyms are concerned, you can always look them up. The

better way is to ask on this list and someone will explain them to you.

OK - CCR means Complete Cytogenic Response. This happens when they do a BMB

or BMA and the results are 0/20. No evidence of the CML.

Now watch what happened. In order to explain what CCR meant, I had to

introduce two new acronyms. Now I have to define them.

BMB stands for Bone Marrow Biopsy and BMA stands for Bone Marrow Aspiration.

These are the tests they do when they sick that huge horse needle into your

hip and haul out some marrow for testing. So . what is the difference

between a BMA and a BMB? Both tests take out some marrow but the BMB test

also takes out a piece of bone. (It doesn't really but then we start to get

technical again).

Enough she screams!!! But I haven't told you what MMR is yet. Now I have to

be very careful and try to explain it in a simple way. This is difficult

because to do it right I have to bring in things like PCR test and you

really don't want to know what PCR stands for.

MMR means Major Molecular Response. This is a perfect place to be with your

CML. Once you achieve this level of remission there is virtually no chance

that you will ever relapse with your CML. Now to confuse you a lot more, if

you have achieved MMR it means that you have at least a 3 log reduction with

your CML. I mention this because you will come across the term 3 log

reduction. Simply, it means you are in MMR. To explain what a 3 log

reduction means, I will have to give you a course in mathematics.

One thing that will help you is to bring along a tape recorder with you.

Oops . they are now called digital recorders. Record the meeting and then

you won't miss anything or misunderstand what he said.

Good luck and report back after your meeting.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Sent: July 16, 2009 10:30 PM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] Up and down!!!!!!!!!!!

Hi Bobby and thanks so much for the info. I was just going by what my

dingbat Dr told me in SC....he said I should be in remission within 6 mths.

I am not sure if the Dr I am seeing right now is a CML specialist or not.

The Dr I saw while I was in the hospital was and I really liked him. The one

I see now is his partner but they work in different offices and towns. I'm

not sure what CCR and MMR is. I get all confused on all of the abbreviations

and the meanings of everything. I guess I just maybe misunderstood the Dr. I

was just expecting to be in remission by now and it's not happening but I

won't expect that for quite some time now since you told me all this. I WILL

be having a long talk with my Dr on the 27th and hope he can tell me why,

what, when, where and how cause I am surely taking me a book with a ton of

questions for him and I won't leave until I get some answers!!!

BLessings,

WEndy

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929%40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!!!!!

groups (DOT) <mailto:%40> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Thanks Zavie and I am going to save this in my favs so I won't have to ask

again. You are right, I don't really understand about the log reduction stuff

but I will learn more about that when that time comes. I do get copies of all my

blood test they do. Unless I go to the ER. I have never asked them for a

copy...can I get it from them too? I keep up with all the info I get from them

and I have compared tests and it's just like a yo yo. Thanks again for updating

me on the abbreviations. I did know what a BMB and BMA was. I had a BMB once

already but will have to have another at some point, so they say.

BLessings,

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929% 40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) <mailto:% 40groups. com> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Thanks Bobby

From: Bobby Doyle <rmcd1929gmail (DOT) com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) com

Date: Thursday, July 16, 2009, 12:38 PM

 

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6 mos...

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it is

> back up to 44,000. I just don't know what I'm doing wrong and it just really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hi everyone.

I was diagnosed in May '08 and at the time, I remember my FISH(sp?) test results

showing all 200/200 being positive for Philadelphia chromosome cells.  After my

BMB and BMA in December, they decreased to 20cells out of the 200 cells tested. 

I had another BMA and BMB done a couple of weeks ago, and now my cells show

42/200 for the Philadelphia cells.  Not good news.  I am currently waiting for

the CML specialists at Seattle to decide the next step for me to take.  From the

beginning I have been taking 400mg of Gleevec, and my Oncologist in town has

told me to increase it to 600mg. until he is told by the Doctors in Seattle what

to do.  I tolerate Gleevec well, and wonder if any of you have similar stories

or any advice, especially if the Doctors want to change me to Sprycel instead of

trying an increase in my Gleevec.

All advice is greatly appreciated,

________________________________

From: Zavie <zmiller@...>

Sent: Thursday, July 16, 2009 8:38:36 PM

Subject: RE: [ ] Up and down!!!!!!!!!!!

 

Hi ,

One thing that you want to do is get a copy of all your test results. You

don't have to be a rocket scientist to understand them. By just comparing

two sets of results you can easily see if you are improving, remaining

stable or getting worse.

As far as the acronyms are concerned, you can always look them up. The

better way is to ask on this list and someone will explain them to you.

OK - CCR means Complete Cytogenic Response. This happens when they do a BMB

or BMA and the results are 0/20. No evidence of the CML.

Now watch what happened. In order to explain what CCR meant, I had to

introduce two new acronyms. Now I have to define them.

BMB stands for Bone Marrow Biopsy and BMA stands for Bone Marrow Aspiration.

These are the tests they do when they sick that huge horse needle into your

hip and haul out some marrow for testing. So . what is the difference

between a BMA and a BMB? Both tests take out some marrow but the BMB test

also takes out a piece of bone. (It doesn't really but then we start to get

technical again).

Enough she screams!!! But I haven't told you what MMR is yet. Now I have to

be very careful and try to explain it in a simple way. This is difficult

because to do it right I have to bring in things like PCR test and you

really don't want to know what PCR stands for.

MMR means Major Molecular Response. This is a perfect place to be with your

CML. Once you achieve this level of remission there is virtually no chance

that you will ever relapse with your CML. Now to confuse you a lot more, if

you have achieved MMR it means that you have at least a 3 log reduction with

your CML. I mention this because you will come across the term 3 log

reduction. Simply, it means you are in MMR. To explain what a 3 log

reduction means, I will have to give you a course in mathematics.

One thing that will help you is to bring along a tape recorder with you.

Oops . they are now called digital recorders. Record the meeting and then

you won't miss anything or misunderstand what he said.

Good luck and report back after your meeting.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Sent: July 16, 2009 10:30 PM

groups (DOT) com

Subject: Re: [ ] Up and down!!!!!!!! !!!

Hi Bobby and thanks so much for the info. I was just going by what my

dingbat Dr told me in SC....he said I should be in remission within 6 mths.

I am not sure if the Dr I am seeing right now is a CML specialist or not.

The Dr I saw while I was in the hospital was and I really liked him. The one

I see now is his partner but they work in different offices and towns. I'm

not sure what CCR and MMR is. I get all confused on all of the abbreviations

and the meanings of everything. I guess I just maybe misunderstood the Dr. I

was just expecting to be in remission by now and it's not happening but I

won't expect that for quite some time now since you told me all this. I WILL

be having a long talk with my Dr on the 27th and hope he can tell me why,

what, when, where and how cause I am surely taking me a book with a ton of

questions for him and I won't leave until I get some answers!!!

BLessings,

WEndy

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929% 40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) <mailto:% 40groups. com> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hey Zavie,

I was looking back at my old posts and saw where you said that you had heart

problems.  You said that the CML Specialist have experience in treating heart

patients with CML.  Did you go to M D ?   That is where my dad is

suppose to go.  I sent a post earlier about that.  His appointment is this

Monday.  I am trying to get my mom to postpone it 10 days and it will make a

difference in $800 on the plane ticket.  Anyway, they are suppose to see Dr.

Jabbour, but no one here has heard of him. I know that they pair up patients on

who would best serve them so I'm thinking maybe this doctor has some knowledge

of heart cond. along with his expertise in CML.  So, my questions, after

confusing the heck out of you... Do you know anything of this doctor, do you

think they may have paired dad with him because of the heart cond,. and would

you recommend postponing for 10 days now that we have the appt.

 Thanks,

Lori 

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929% 40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) <mailto:% 40groups. com> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hey lori,

I LOVE LOVE LOVE my cardiologist at MDA. His name is Dr. Durand. Amazing and

wonderful, smart and kind. Ask for a referral to him directly from your main

doc at MDA.

Keep in touch,

Rhonda

Sent from my Verizon Wireless BlackBerry

Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) <mailto:% 40groups. com> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

Hi Lori,

I was treated at OHSU with Dr. Druker and Dr. Mauro.

This was early in the game and they were just being cautious. I have 2 heart

problems. The first one was aortic stenosis and that was taken care of in

1991 by installing a mechanical aortic valve. It still keeps on ticking.

My second heart problem was/is congestive heart failure. This was the direct

result of the interferon that I took for 3 months beginning in October 1999.

What they did at OHSU was start me on 200 mg of Gleevec for 2 days, then 300

mg for 2 days and then 400 mg. I'm still on the 400 mg dose.

All I know about Dr. Jabbour is what I read in the internet. Just Google Dr.

Elias Jabbour and read about him. One of his specialties is internal

medicine. This is a huge bonus because he is aware of the entire body and

the different interactions that go on. I also noted that he has published on

AML, ALL and MDS. He looks good on paper.

I would certainly wait 10 days to save $800 in air fare.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of Lori

Sent: July 28, 2009 5:09 PM

Subject: RE: [ ] Up and down!!!!!!!!!!!

Hey Zavie,

I was looking back at my old posts and saw where you said that you had heart

problems. You said that the CML Specialist have experience in treating

heart patients with CML. Did you go to M D ? That is where my dad

is suppose to go. I sent a post earlier about that. His appointment is

this Monday. I am trying to get my mom to postpone it 10 days and it will

make a difference in $800 on the plane ticket. Anyway, they are suppose to

see Dr. Jabbour, but no one here has heard of him. I know that they pair up

patients on who would best serve them so I'm thinking maybe this doctor has

some knowledge of heart cond. along with his expertise in CML. So, my

questions, after confusing the heck out of you... Do you know anything of

this doctor, do you think they may have paired dad with him because of the

heart cond,. and would you recommend postponing for 10 days now that we have

the appt.

Thanks,

Lori

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929% 40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) <mailto:% 40groups. com> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

> All I know about Dr. Jabbour is what I read in the internet. Just Google Dr.

> Elias Jabbour and read about him. One of his specialties is internal

> medicine. This is a huge bonus because he is aware of the entire body and

> the different interactions that go on.

*********************************

Hi Zavie,

I believe that all specialists have credentials in internal medicine. I think

it's a pre-requisite or stepping stone if you will, to getting into a specialty.

Certainly every specialist I ever saw (dermatologist, cardiologist, hematologist

etc) had internal medicine in their title.

Tracey

[Guest guest]

Hi Tracey,

I was thinking internist, which is a specialty in itself.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of Tracey

Sent: July 28, 2009 7:34 PM

Subject: Re: [ ] Up and down!!!!!!!!!!!

> All I know about Dr. Jabbour is what I read in the internet. Just Google

Dr.

> Elias Jabbour and read about him. One of his specialties is internal

> medicine. This is a huge bonus because he is aware of the entire body and

> the different interactions that go on.

*********************************

Hi Zavie,

I believe that all specialists have credentials in internal medicine. I

think it's a pre-requisite or stepping stone if you will, to getting into a

specialty. Certainly every specialist I ever saw (dermatologist,

cardiologist, hematologist etc) had internal medicine in their title.

Tracey

[Guest guest]

,

Just remember that there are other drugs that have all ready been

approved if gleevec doesn't work for you and many others that are in

trials.

>

[Guest guest]

Hi ,

You can try taking tranquilizers; smoke a joint, drink etc. I don't think

you can remain calm.

What I think can help is exactly what you are doing now . and that is

learning about CML and all the options that are currently out there.

Personally I don't think that we can conclude that Gleevec has failed you

yet. But if it has, there are so many other drugs out there that work really

well when Gleevec stops working.

When I failed on Interferon I went to the internet to find out everything I

could about my situation. I went to see the top doctor I could find (Dr.

Druker). Was I calm? Absolutely not. Was it exciting? Yes.

This is a journey. You may as well enjoy the ride.

Wishing you an easy trip and can't wait to enroll you in the Zero Club.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

Lomsdalen

Sent: July 30, 2009 8:38 PM

Subject: Fw: [ ] Up and down!!!!!!!!!!!

Zavie/All

First I'd like to thank you for the articles. Learning more about this

disease is both scary and empowering.

I've been on the increased dosage of Gleevec from the 400mg I took for a

year, and am now currently taking 600mg. I feel like I did in the beginning

week with Gleevec. My whole body feels like it's humming or vibrating. I'm

more tired, and feel cold all over. It's been in the 90's here in

Bellingham, so I've had no problem going outside to get warm. My

Oncologists want to wait 6 weeks to do a PCR test to see if this increase is

helping or not. I'm trying not to worry too much, but it's hard not to.

How do you all remain calm when one drug fails you?

God Bless,

________________________________

From: Zavie <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca>

Lomsdalen <llomsdalen (DOT) <mailto:llomsdalen%40> com>

Sent: Saturday, July 25, 2009 10:02:28 AM

Subject: RE: [ ] Up and down!!!!!!!!!!!

Hi ,

I'm not positive, but my guess is that you will need a BMB to check the

mutations.

Most patients don't go the route of transplants any more. The big problem is

the mortality rate. Less than 50% of transplant patients are alive after 5

years. For my money, it should only be considered as a last resort. It was

done in the early days when there was no other treatment available.

CML can be very scary. Also, knowing too much is also scary. It is often

said by all the experts, if you were destined to get cancer, then CML would

be the best one to get. Today, nobody dies from CML. 15-20 years ago it was

a death sentence.

Look at this article

http://www.cdhb.

<http://www.cdhb.govt.nz/chlabs/miscdocuments/CML_Monitoring_Guidelines_Jul%

202007.pdf>

govt.nz/chlabs/miscdocuments/CML_Monitoring_Guidelines_Jul%202007.pdf

This is why you need a CML expert treating you. In your case, the Gleevec

dose would have already been increased. Because they waited so long, you

might as well have the mutation testing just to be sure. Only a CML expert

is in the best position to decide what to do.

Here is another one

http://www.cmlsourc <http://www.cmlsource.com/managing_cml.php?lang=1>

e.com/managing_cml.php?lang=1

Note that the Canadian recommendation says that you should achieve CCR after

18 months, not 12 months.

In your case, I would seriously consider switching to Tasigna instead of

Sprycel. Both drugs appear to be better than Gleevec. I say better because

they both get you into remission faster than Gleevec. But over time, Gleevec

achieves the same results, but takes longer.

I saw a presentation on Tasigna by Dr. Talpaz recently and it is clearly

better than Gleevec. The only thing that they don't know is how well it does

over time.

The problem I have with Sprycel is one of the side effects is pleural

effusion. This can be life threatening.

I know this is a lot of stuff to digest, but what I am really saying is that

you are going to be fine.. Off to a slow start maybe, but in the end you

will catch up and be fine.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

________________________________

From: Lomsdalen [mailto:llomsdalen (DOT)

<mailto:llomsdalen%40> com]

Sent: July 25, 2009 10:52 AM

Zavie

Subject: Re: [ ] Up and down!!!!!!!!!!!

Thank you Zavie.

I will ask my oncologist to perform the test for mutations. Is this a blood

test taken from my arm, or do they need my bone marrow to find this out?

I'm sure alot of people have run into this same problem, and I know I have

options, but every little bump in the road really scares me!

Even with the other two options besides Gleevec, do many others go ahead and

put their names on the Bone marrow registry ahead of time?

Thank you,

________________________________

From:Zavie <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca>

Lomsdalen <llomsdalen (DOT) <mailto:llomsdalen%40..com> .com>

Sent: Friday, July 24, 2009 4:38:56 PM

Subject: RE: [ ] Up and down!!!!!!!!!!!

Hi ,

Just to let you know that this is a great plan. The simple solution is to

increase the dose and it might even be the correct one. I would want the

experts to do eliminate that it might be a mutation. If it is a mutation,

then you would want to switch to the appropriate drug that is effective

against it.It may even be Sprycel.

Hang in there,

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3.8 log reduction May/09

e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

________________________________

From:groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

Lomsdalen

Sent: July 24, 2009 3:08 PM

groups (DOT) <mailto:%40> com

Subject: Re: [ ] Up and down!!!!!!!!!!!

Hi everyone.

I was diagnosed in May '08 and at the time, I remember my FISH(sp?) test

results showing all 200/200 being positive for Philadelphia chromosome

cells. After my BMB and BMA in December, they decreased to 20cells out of

the 200 cells tested. I had another BMA and BMB done a couple of weeks ago,

and now my cells show 42/200 for the Philadelphia cells. Not good news. I

am currently waiting for the CML specialists at Seattle to decide the next

step for me to take. From the beginning I have been taking 400mg of

Gleevec, and my Oncologist in town has told me to increase it to 600mg.

until he is told by the Doctors in Seattle what to do. I tolerate Gleevec

well, and wonder if any of you have similar stories or any advice,

especially if the Doctors want to change me to Sprycel instead of trying an

increase in my Gleevec..

All advice is greatly appreciated,

____________ _________ _________ __

From: Zavie <zmillersympatico (DOT) ca>

groups (DOT) com

Sent: Thursday, July 16, 2009 8:38:36 PM

Subject: RE: [ ] Up and down!!!!!!!! !!!

Hi ,

One thing that you want to do is get a copy of all your test results. You

don't have to be a rocket scientist to understand them. By just comparing

two sets of results you can easily see if you are improving, remaining

stable or getting worse.

As far as the acronyms are concerned, you can always look them up. The

better way is to ask on this list and someone will explain them to you.

OK - CCR means Complete Cytogenic Response. This happens when they do a BMB

or BMA and the results are 0/20. No evidence of the CML.

Now watch what happened. In order to explain what CCR meant, I had to

introduce two new acronyms. Now I have to define them.

BMB stands for Bone Marrow Biopsy and BMA stands for Bone Marrow Aspiration.

These are the tests they do when they sick that huge horse needle into your

hip and haul out some marrow for testing. So . what is the difference

between a BMA and a BMB? Both tests take out some marrow but the BMB test

also takes out a piece of bone. (It doesn't really but then we start to get

technical again).

Enough she screams!!! But I haven't told you what MMR is yet. Now I have to

be very careful and try to explain it in a simple way.. This is difficult

because to do it right I have to bring in things like PCR test and you

really don't want to know what PCR stands for.

MMR means Major Molecular Response. This is a perfect place to be with your

CML. Once you achieve this level of remission there is virtually no chance

that you will ever relapse with your CML. Now to confuse you a lot more, if

you have achieved MMR it means that you have at least a 3 log reduction with

your CML. I mention this because you will come across the term 3 log

reduction. Simply, it means you are in MMR. To explain what a 3 log

reduction means, I will have to give you a course in mathematics.

One thing that will help you is to bring along a tape recorder with you..

Oops . they are now called digital recorders. Record the meeting and then

you won't miss anything or misunderstand what he said.

Good luck and report back after your meeting.

Zavie

Zavie (age 71)

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

3.7 log reduction Jan/09

3..8 log reduction May/09

e-mail: zmillersympatico (DOT) ca

Tel: 613-726-1117

Fax: 613-482-4801

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: groups (DOT) com [mailto:] On Behalf Of

Sent: July 16, 2009 10:30 PM

groups (DOT) com

Subject: Re: [ ] Up and down!!!!!!!! !!!

Hi Bobby and thanks so much for the info. I was just going by what my

dingbat Dr told me in SC....he said I should be in remission within 6 mths.

I am not sure if the Dr I am seeing right now is a CML specialist or not.

The Dr I saw while I was in the hospital was and I really liked him. The one

I see now is his partner but they work in different offices and towns. I'm

not sure what CCR and MMR is. I get all confused on all of the abbreviations

and the meanings of everything. I guess I just maybe misunderstood the Dr. I

was just expecting to be in remission by now and it's not happening but I

won't expect that for quite some time now since you told me all this. I WILL

be having a long talk with my Dr on the 27th and hope he can tell me why,

what, when, where and how cause I am surely taking me a book with a ton of

questions for him and I won't leave until I get some answers!!!

BLessings,

WEndy

From: Bobby Doyle <rmcd1929gmail (DOT) <mailto:rmcd1929% 40gmail.com> com>

Subject: Re: [ ] Up and down!!!!!!!! !!!

groups (DOT) <mailto:% 40groups. com> com

Date: Thursday, July 16, 2009, 12:38 PM

Hi , I think you are quite right to be upset about the rising wbc, and

perhaps your dr. should have you on hydroxyurea to help reduce it.

But, I think you are a bit hasty in expecting to be in remission only 6

mos..

after being dx. Hematological remission, yes, that could happen that soon

if Gleevec is working for you. I never reached cytogenetic remission for 10

years! I was dx in 95, went through 3 trials , first Gleevec, then two

combining Gleevec, and still did not reach ccr. Sprycel is what put me in

CCR and not until I had been on it for 10 months. I'm in the Ariad trial

now, still hoping for the magic pill that will put me in MMR, after 14 yrs.!

You certainly could be one of those that Gleevec is not working for, and

that is the miracle of todays drugs. There is Sprycel and Tasigna to fall

back on. Believe me, as much as we all want to be in remission, it is

really to soon for you to be upset because you have not achieved it yet.

Sometimes drugs don't all work for everyone, and there certainly is the

possibility of Sprycel or Tasigna working for you. Gleevec didn't work for

me, but Sprycel did, I don't know why, maybe because some of us are more

resistant to one drug over another. Do you go to a CML expert? Please don't

get so frustrated, we are all so different and what works for one will not

work for another.

Goodness, I am in my 6th trial trying to get one to put me in molecular

remission and keep me there, but have never attained that yet, only CCR,

but I'm happy with CCR, it's sure better than nothing. Hang in there, your

dr. will get you on one of them and hopefully you will see better results,

but please don't rush it, today is a good time for all CML'ers, lots of

good things happening in the research department. Take care, Bobby

On Wed, Jul 15, 2009 at 9:35 PM, wendyphillips54

<wendyphillips54>wrote:

>

>

> I went today to have my wbc checked and it is UP again!!!! I am soooo

> frustated! When I fell last week and went to the ER, they checked it then

> and it was 28,000. That is the lowest it has been since I was dx with CML

> and I was excited. I thought, finally, it's working for me. Well today it

is

> back up to 44,000. I just don't know what I'm doing wrong and it just

really

> frustrates me. The Dr checked my Gleevec level today to see if my body is

> absorbing it. I go back on the 27th and he plans to switch me to Tasigna

> then. My question is: if the Gleevec is not working and Tasigna is in the

> same group of meds, then what makes him think the Tasigna will work? I was

> dx in February and have not been in remission yet!!!!!!!

>

>

>

>

--

a Doyle/dob 1929

DX /CML/1995/Interfero n/hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/04 - Sprycel Trial, MDACC, Dr. Talpaz

3/05 - CCR

12/07 - Ended trial due to Pleural Effusion

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

#840 Zavie's Zero Club #840

[Guest guest]

That's right! Not to worry, .

From: scrappygirl123@...

Date: Thu, 30 Jul 2009 20:55:52 -0400

Subject: Re: [ ] Up and down!!!!!!!!!!!

,

Just remember that there are other drugs that have all ready been

approved if gleevec doesn't work for you and many others that are in

trials.

>

_________________________________________________________________

Windows Live™ Hotmail®: Search, add, and share the web’s latest sports videos.

Check it out.

http://www.windowslive.com/Online/Hotmail/Campaign/QuickAdd?ocid=TXT_TAGLM_WL_QA\

_HM_sports_videos_072009 & cat=sports