[Spam?] Re: Initial Treatment Decision--Zavie

[Guest guest]

Dear Zavie,

I noticed on your zero club data sheet that you listed Dr. Druker as

one of your doctors. My husband has an appointment for a consultation

with Dr. Druker. Do mind if I ask how often you see him and if you

pay out of pocket for all of your visits? We are Canadian as well,

and as far as I know our insurance won't cover a visit to the states.

Coralee

On Mar 3, 2007, at 8:20 PM, Zavie wrote:

> Dear Don,

>

> Dear Don,

>

> Welcome to the world of CML and welcome to the site. We are

> here to support you and help you in any way we can.

>

> The following is a questionnaire that I send out to all new Zero

> Club members. Hopefully you will reach this level very quickly.

>

> I urge you to visit all the CML support groups on this list and

> select the one that suits your personality. I know that you have

> already found the NEWCMLDRUG.COM list.

>

> I have already answered your questions and will let others on this

> list give their opinion. Based on what you have posted, my

> suggestion is that you start with Gleevec first.

>

> Zavie

>

>

> My data looks like this:

> 1. Your name: Zavie

> 2. Your e-mail address: zmiller@...

> 3. Your hometown: Ottawa, Ontario, Canada

> 4. The date you were diagnosed: August 2, 1999

> 5. The date you started Gleevec: March 27, 2001

> 6. The date you reached Zero (CCR): September 10, 2001

> 7. The date you reached PCRU. March 28, 2002

> 8. Age at diagnosis: 61

> 9. Your Doctor's name: Druker/Mauro/Bormanis

> 10. Where you receive treatment: OHSU/Ottawa Civic

> 11. Clinical Trial: 113

> 12: Zero Club number: 102

> 13. A brief history/bio of yourself and CML:

>

> Diagnosed in August 1999 as the result of a regular blood test.

> Hydroxyurea and then interferon in October 26, 1999. Severe side

> effects culminating in Congestive Heart Failure. Hospitalized via

> 911 route. Stopped interferon January 11, 2000. pH+ was reduced to

> 86%. Stayed off all medication for one year. My WBC rose slowly

> (from 4.0 to 125). My ph+ went up to 96%.

>

> I wrote Dr. Druker in April 2000 and went to OHSU for a consultation

> in November 2000. At this point I had applied to 4 different sites

> for a clinical trial. I was accepted at OHSU with Dr. Mauro.

> Hydroxyurea from January 8, 2001 - March 20, 2001 brought my WBC

> down to 10. Started STI571 on March 27, 2001.

>

> My 3 month BMB showed 15% pH+, and my 6 month BMB showed 0%pH+. A

> PCR test done at the Royal Hospital in Montreal showed 0

> bcr-abl.

>

> I later discovered that the PCR sensitivity at the RVH was only 1 in

> 10,000. My current PCR results show a 2.8 log reduction.

>

> I started keeping track of the Zero Club the day I began Gleevec

> treatment. I consider myself truly blessed.

>

> Zavie

>

> Zavie (age 68)

> 67 Shoreham Avenue

> Ottawa, Canada, dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> PCRU 5/02 at RVH

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

> ----------------------------------------------------------

> -------

>

> From Cogan

>

> Now a plug for one of my favourite projects.

> I hope ALL the new zeros will write a note in the Dr. Druker

> Appreciation Album. Here is how you get to it:

>

> go to www.newcmldrug.com

> click on THANK YOU in the left hand column

> then click on " view the Appreciation Album "

> then click on " view/sign the guest book "

>

> To those newbies getting such great results who might not know who

> Dr. Druker is, here is a little synopsis.

>

> He was the Principle Investigator of the Gleevec Trials. The success

> of these trials made Gleevec an FDA approved drug in the US in record

> time.

>

> Prior to the trials, Dr. Druker spent 6 years in the lab, working

> with

> Novartis (orig. Ciba-Geigy), the chemists and other scientists to

> develop the kinase inhibitor into a drug that humans could take by

> mouth.

>

> He told me that he had about 10 years of prior lab research leading

> up

> to working on the kinase inhibitor.

>

> If you have never looked at The Appreciation Album, you can read

> about

> a lot of the early trial patients, some on this List. There are also

> gratitude pages that name and thank others who contributed to the

> development of Gleevec.

>

> The Album was put together by 4 of your friends from this List, and I

> am sure you will recognize these names.....Zavie, Dorothy Emery,

>

> Kramer and myself.....and all those who contributed their individual

> pages.

>

> Those who are treated at OHSU, where Dr. Druker works, have often

> heard him say that he never gets tired of hearing people's stories.

> Hearing about success with Gleevec is what " fuels his jets " (an

> expression I borrowed from a college student I once treated!).....

> and we want to keep those jets fuelled as he returns to the lab to

> work on Gleevec resistance, and a new drug for AML.

>

> I hope this info will encourage ALL of you to participate and

> add your message to The Album.

>

> Thanks,

> C. (the Maui Turtle)

> ----------------------------------------------------------

>

> My favorite CML web sites are:

>

> 1. CML (Old Site)

> /

> 2. CML Support () http://www.cmlsupport.com/

> 3. CML Unofficial Gleevec Site (Jerry) http://www.newcmldrug.com/

> CML Discussion http://www.newcmldrug.com/Discuss/default.asp

> BMS Discussion http://www.newcmldrug.com/bms_discuss/default.asp

> 4. CML European Site

> http://www.newcmldrug.com/uksupportgroup/

> 5. CML Asian Site

> http://asia./group/AsianCMLSupportGroup/

> 6. CML Gleevec Site Gleevec

> 7. CML ACOR site

> http://listserv.acor.org/archives/cml.html

> 8. CML Lite House Site http://www.cml-litehouse.bravepages.com/

> 9. CML Hope Site http://groups.google.com/group/CMLHope

>

> Zavie

>

> ----------------------------------------------------------

>

> Top CML Doctors

>

> Dr. Goldman j.goldman@...

> Dr. Moishe Talpaz mtalpaz@... 734-764-8195

> Dr. Druker drukerb@... 503-494-5596

> Dr. Sawyers sawyersc@... 646-888-2138

> Dr. Mauro maurom@... 503-494-0376

> Dr. s Hochhaus andreas.hochhaus@...-

> eidelberg.de

> Dr. Tim

> 0861 822 2400

> Dr. Demetri gdemetri@...

> Dr. Nimer s-nimer@... 212-639-7871

> Dr. Hagop Kantarjian hkantarj@... 713-792-

> 7026

> Dr, Stone rstone@...

> Dr. Blanke blankec@...

> See http://www.cmlsupport.com/cmldocs.htm for an expanded list

>

> Top CML Places in the UK

>

> The Royal Free Hospital - North West London - Professor

> Mackinnon

> Hammersmith Hospital - London - Professor Apperly

> Royal Liverpool University Hospital - Professor

> Queen hospital - Birmingham - Professor Charlie Craddock.

>

> ----------------------------------------------------------

> --

>

> A CML Chat takes place every Tuesday evening at 9:00 PM EST and

> every Saturday morning at 9:00 AM. Contact Zavie for details.

>

> Zammett Ruddy's blog at Glamour

> http://www.glamour.com/lifestyle/blogs/editor

>

> Zavie (age 68)

> 67 Shoreham Avenue

> Ottawa, Canada, dxd AUG/99

> INF OCT/99 to FEB/00, CHF

> No meds FEB/00 to JAN/01

> Gleevec since MAR/27/01 (400 mg)

> CCR SEP/01. #102 in Zero Club

> PCRU 5/02 at RVH

> 2.8 log reduction Sep/05

> 3.0 log reduction Jan/06

> e-mail: zmiller@...

> Tel: 613-726-1117

> Fax: 309-296-0807

> Cell: 613-202-0204

> ID: zaviem

>

>

> >

> > I was diagnosed with CML last week. This week I have been taking

> > Allpurinol in preparation for taking Imatinib or Dasatinib. What

> I

> > would like some advice on is whether I should elect to take

> Dasatinib

> > from the start or should I take the Imatinib first and only

> convert to

> > the Dasatinib if I develop a resitance to Imatinib.

> > Secondly, is there any information concerning the use of Dasatinib

> for

> > a period of time and then switching to Imatinib???

> >

> > Thanks in advance for your response.

> >

> > Don

> >

>

>

>

This email has been scanned by Barracuda Network's Anti-Virus and Spam Firewall.

[Guest guest]

Hi Coralee,

I don't see Dr. Druker anymore. I initially saw him on a

consultation back in 2000 and then during the clinical trials in

2001.

Even though I don't go to see him at OHSU, I still consider him my

doctor. Anytime I have a question regarding my CML I correspond with

him via email or telephone.

I went to Portland 5 times at my own expense. It was the best money

that I have ever spent.

There is a way that you can get reimbursed for a visit to Dr.

Druker. You will need your local physician to say that a visit to

OHSU was necessary to determine the proper treatment. Be prepared

for a battle with OHIP to get reimbursed.

Zavie

>

> > Dear Don,

> >

> > Dear Don,

> >

> > Welcome to the world of CML and welcome to the site. We are

> > here to support you and help you in any way we can.

> >

> > The following is a questionnaire that I send out to all new Zero

> > Club members. Hopefully you will reach this level very quickly.

> >

> > I urge you to visit all the CML support groups on this list and

> > select the one that suits your personality. I know that you have

> > already found the NEWCMLDRUG.COM list.

> >

> > I have already answered your questions and will let others on

this

> > list give their opinion. Based on what you have posted, my

> > suggestion is that you start with Gleevec first.

> >

> > Zavie

> >

> >

> > My data looks like this:

> > 1. Your name: Zavie

> > 2. Your e-mail address: zmiller@...

> > 3. Your hometown: Ottawa, Ontario, Canada

> > 4. The date you were diagnosed: August 2, 1999

> > 5. The date you started Gleevec: March 27, 2001

> > 6. The date you reached Zero (CCR): September 10, 2001

> > 7. The date you reached PCRU. March 28, 2002

> > 8. Age at diagnosis: 61

> > 9. Your Doctor's name: Druker/Mauro/Bormanis

> > 10. Where you receive treatment: OHSU/Ottawa Civic

> > 11. Clinical Trial: 113

> > 12: Zero Club number: 102

> > 13. A brief history/bio of yourself and CML:

> >

> > Diagnosed in August 1999 as the result of a regular blood test.

> > Hydroxyurea and then interferon in October 26, 1999. Severe side

> > effects culminating in Congestive Heart Failure. Hospitalized via

> > 911 route. Stopped interferon January 11, 2000. pH+ was reduced

to

> > 86%. Stayed off all medication for one year. My WBC rose slowly

> > (from 4.0 to 125). My ph+ went up to 96%.

> >

> > I wrote Dr. Druker in April 2000 and went to OHSU for a

consultation

> > in November 2000. At this point I had applied to 4 different

sites

> > for a clinical trial. I was accepted at OHSU with Dr. Mauro.

> > Hydroxyurea from January 8, 2001 - March 20, 2001 brought my WBC

> > down to 10. Started STI571 on March 27, 2001.

> >

> > My 3 month BMB showed 15% pH+, and my 6 month BMB showed 0%pH+. A

> > PCR test done at the Royal Hospital in Montreal showed 0

> > bcr-abl.

> >

> > I later discovered that the PCR sensitivity at the RVH was only

1 in

> > 10,000. My current PCR results show a 2.8 log reduction.

> >

> > I started keeping track of the Zero Club the day I began Gleevec

> > treatment. I consider myself truly blessed.

> >

> > Zavie

> >

> > Zavie (age 68)

> > 67 Shoreham Avenue

> > Ottawa, Canada, dxd AUG/99

> > INF OCT/99 to FEB/00, CHF

> > No meds FEB/00 to JAN/01

> > Gleevec since MAR/27/01 (400 mg)

> > CCR SEP/01. #102 in Zero Club

> > PCRU 5/02 at RVH

> > 2.8 log reduction Sep/05

> > 3.0 log reduction Jan/06

> > e-mail: zmiller@...

> > Tel: 613-726-1117

> > Fax: 309-296-0807

> > Cell: 613-202-0204

> > ID: zaviem

> >

> > ----------------------------------------------------------

> > -------

> >

> > From Cogan

> >

> > Now a plug for one of my favourite projects.

> > I hope ALL the new zeros will write a note in the Dr. Druker

> > Appreciation Album. Here is how you get to it:

> >

> > go to www.newcmldrug.com

> > click on THANK YOU in the left hand column

> > then click on " view the Appreciation Album "

> > then click on " view/sign the guest book "

> >

> > To those newbies getting such great results who might not know

who

> > Dr. Druker is, here is a little synopsis.

> >

> > He was the Principle Investigator of the Gleevec Trials. The

success

> > of these trials made Gleevec an FDA approved drug in the US in

record

> > time.

> >

> > Prior to the trials, Dr. Druker spent 6 years in the lab, working

> > with

> > Novartis (orig. Ciba-Geigy), the chemists and other scientists to

> > develop the kinase inhibitor into a drug that humans could take

by

> > mouth.

> >

> > He told me that he had about 10 years of prior lab research

leading

> > up

> > to working on the kinase inhibitor.

> >

> > If you have never looked at The Appreciation Album, you can read

> > about

> > a lot of the early trial patients, some on this List. There are

also

> > gratitude pages that name and thank others who contributed to the

> > development of Gleevec.

> >

> > The Album was put together by 4 of your friends from this List,

and I

> > am sure you will recognize these names.....Zavie, Dorothy Emery,

> >

> > Kramer and myself.....and all those who contributed their

individual

> > pages.

> >

> > Those who are treated at OHSU, where Dr. Druker works, have often

> > heard him say that he never gets tired of hearing people's

stories.

> > Hearing about success with Gleevec is what " fuels his jets " (an

> > expression I borrowed from a college student I once

treated!).....

> > and we want to keep those jets fuelled as he returns to the lab

to

> > work on Gleevec resistance, and a new drug for AML.

> >

> > I hope this info will encourage ALL of you to participate and

> > add your message to The Album.

> >

> > Thanks,

> > C. (the Maui Turtle)

> > ----------------------------------------------------------

> >

> > My favorite CML web sites are:

> >

> > 1. CML (Old Site)

> > /

> > 2. CML Support () http://www.cmlsupport.com/

> > 3. CML Unofficial Gleevec Site (Jerry) http://www.newcmldrug.com/

> > CML Discussion http://www.newcmldrug.com/Discuss/default.asp

> > BMS Discussion http://www.newcmldrug.com/bms_discuss/default.asp

> > 4. CML European Site

> > http://www.newcmldrug.com/uksupportgroup/

> > 5. CML Asian Site

> > http://asia./group/AsianCMLSupportGroup/

> > 6. CML Gleevec Site Gleevec

> > 7. CML ACOR site

> > http://listserv.acor.org/archives/cml.html

> > 8. CML Lite House Site http://www.cml-litehouse.bravepages.com/

> > 9. CML Hope Site http://groups.google.com/group/CMLHope

> >

> > Zavie

> >

> > ----------------------------------------------------------

> >

> > Top CML Doctors

> >

> > Dr. Goldman j.goldman@...

> > Dr. Moishe Talpaz mtalpaz@... 734-764-8195

> > Dr. Druker drukerb@... 503-494-5596

> > Dr. Sawyers sawyersc@... 646-888-2138

> > Dr. Mauro maurom@... 503-494-0376

> > Dr. s Hochhaus andreas.hochhaus@...

> > eidelberg.de

> > Dr. Tim

> > 0861 822 2400

> > Dr. Demetri gdemetri@...

> > Dr. Nimer s-nimer@... 212-639-7871

> > Dr. Hagop Kantarjian hkantarj@... 713-792-

> > 7026

> > Dr, Stone rstone@...

> > Dr. Blanke blankec@...

> > See http://www.cmlsupport.com/cmldocs.htm for an expanded list

> >

> > Top CML Places in the UK

> >

> > The Royal Free Hospital - North West London - Professor

> > Mackinnon

> > Hammersmith Hospital - London - Professor Apperly

> > Royal Liverpool University Hospital - Professor

> > Queen hospital - Birmingham - Professor Charlie

Craddock.

> >

> > ----------------------------------------------------------

> > --

> >

> > A CML Chat takes place every Tuesday evening at 9:00 PM EST and

> > every Saturday morning at 9:00 AM. Contact Zavie for details.

> >

> > Zammett Ruddy's blog at Glamour

> > http://www.glamour.com/lifestyle/blogs/editor

> >

> > Zavie (age 68)

> > 67 Shoreham Avenue

> > Ottawa, Canada, dxd AUG/99

> > INF OCT/99 to FEB/00, CHF

> > No meds FEB/00 to JAN/01

> > Gleevec since MAR/27/01 (400 mg)

> > CCR SEP/01. #102 in Zero Club

> > PCRU 5/02 at RVH

> > 2.8 log reduction Sep/05

> > 3.0 log reduction Jan/06

> > e-mail: zmiller@...

> > Tel: 613-726-1117

> > Fax: 309-296-0807

> > Cell: 613-202-0204

> > ID: zaviem

> >

> > --- In , " donanddawn47 " <donanddawn47@>

wrote:

> > >

> > > I was diagnosed with CML last week. This week I have been

taking

> > > Allpurinol in preparation for taking Imatinib or Dasatinib.

What

> > I

> > > would like some advice on is whether I should elect to take

> > Dasatinib

> > > from the start or should I take the Imatinib first and only

> > convert to

> > > the Dasatinib if I develop a resitance to Imatinib.

> > > Secondly, is there any information concerning the use of

Dasatinib

> > for

> > > a period of time and then switching to Imatinib???

> > >

> > > Thanks in advance for your response.

> > >

> > > Don

> > >

> >

> >

> >

>

>

> This email has been scanned by Barracuda Network's Anti-Virus and

Spam Firewall.

>

>

>