Re: Initial Treatment Decision

[Guest guest]

Hi Don,

I am sorry to hear of your recent diagnosis. The next bit takes a bit

of getting used to the treatment and condition of CML. The first line

of treatment is Imatinib...and with Imatinib there is a very high

success rate. The second treatment is dasatinib (Sprycel). Studies

show dasatinib has greatly improved treatment where Imatinib (gleevec)

has failed or a patient has become resistant or developed a toxicity.

Gleevec has more history than the latter - people have been on it

longer, so more is known of it's performance and the side effect. I

hope this helps- where are you located? How were you diagnosed? As I

said , the next while can be difficult- my husband has been on gleevec

since Oct 06 and has now gotten over the worst of the side effects (3

mths) but has been carrying on with work and now is training for a

marathon in May...hope this helps!

Shalyn

" Catch on fire with enthusiasm and people will come for miles to watch you

burn. " - Wesley

[Guest guest]

Hi

Sorry to hear about your diagnosis, take heart that you have found a

good group here to answer your questions and concerns.

The decision on which medication to start, I believe should be made by

your doctor. As far as I am aware, Imatinib is the only first line

medication given for CML-someone will correct me if I am wrong. This

has been a true miracle drug for many, and those that go on to other

medications do so for a few reasons-the drug does not have the desired

effect on their counts, or they cannot get their counts under control

on the drug, they are intolerant to it due to side effects, or they

have have chromosomal abnormalities/translocations that Gleevec will

not work on. Imatinib does work, and works well for the majority of

CML'ers. Your Doctor is the best one to help you with these questions.

Also check out the CML Society webpage-there is lots of information

that will help you, especially being newly diagnosed.

www.cmlsociety.org.

Take care, and ask all the questions you need.

ne

>

> 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

>

[Guest guest]

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

>

[Guest guest]

Hello Don,

I have been reading this list for a very short while. most of the information is

good. There

seems to be a lot of anecdotal information and I would be cautious about making

any

decisions based on some of them.

However, I have browsed through the archives and see that the posts from

R. are

informative as well as C. and Cheryl-Anne.

From what I understand Dasatinib may be undergoing clinical trials to test its

efficacy as a

firstline treatment. Maybe you are lucky enough to be at one of those clinical

sites?

Welcome to the new world of CML. Hopefully you will find the information you

need to

make the decisions that suit you best. It can be confusing in the beginning.

Good luck,

JM

>

> 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

>

[Guest guest]

Hi JM,

I tried writing to you privately, but your email address doesn't work.

Welcome to the club that nobody really wants to be a member of. Could you

tell us where you live, who you are being treated by and where you are

currently at with your CML. I ask this because I am always on the lookout

for new members into the Zero Club. Although we never wanted to be a member

of the CML club, once we are in the CML Club, then we want to join the Zero

Club as quickly as possible.

We don't know where Don lives. If he lives in Canada, there is no way that

he can get onto Dasatinib since it hasn't been approved for first line

treatment.

With respect to Don's question about starting on Desatinib, I offer this

quote from Dr. Druker on which I based my response ...

Combination trials will be undertaken, said Dr. Druker, who is planning a

head-to-head trial comparing the drugs as first-line treatments. The

question of which one to use will come down to response rate and

tolerability, he said. Citing imatinib's impressive record over the long

term, Dr. Druker has decided to use it as the first-line therapy for now.

" But if dasatinib turns out to be better, " he added, " I will go with it. "

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

[ ] Re: Initial Treatment Decision

Hello Don,

I have been reading this list for a very short while. most of the

information is good. There

seems to be a lot of anecdotal information and I would be cautious about

making any

decisions based on some of them.

However, I have browsed through the archives and see that the posts from

R. are

informative as well as C. and Cheryl-Anne.

From what I understand Dasatinib may be undergoing clinical trials to test

its efficacy as a

firstline treatment. Maybe you are lucky enough to be at one of those

clinical sites?

Welcome to the new world of CML. Hopefully you will find the information

you need to

make the decisions that suit you best. It can be confusing in the

beginning.

Good luck,

JM

>

> 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

>

[Guest guest]

Hello Zavie,

My e-mail address does work, I have chosen for it not to show up

because Iam trying to reduce the amount of spam. That being said, my

e-mail address does work as I do get mail. Perhpas if you have it

you should re-check it?

Thanks for your offer to share, but I prefer not to provide

additional information other than I am an American and live in the

states. Each of us has the choice of what we wish to share or not,

that is one of our basic rights I believe. Thanks also for your

offer to join a zero club, but I would take a pass on that too. I

have a family and I work quite hard and have acieved a fair success

in my life. Having CML is not like joing a golf club, and I find it

amusing that people refer to it in such a cavalier way. Please do

not be insulted I realize from reading about you that you are retired

and for you and folks like you this can be more like a hobby. For

you and others this may just bve the best way to handle this disease.

I have to ask, are you one of the moderators of this group or owner?

I belong to other groups for some of my hobbies and we always seem to

know who the person is for us to go to with questions about how the

group is run. There doesn't seem to be anyplace here for this. Why

would this information be difficult to locate, this is a support

group for CML no? Again, this is all meant in a supportive way. I

just find that for new people coming here it is awkward to figure out

who is who?

Perhpas you can clarify a few of these points for me. Or if anyone

else in the gruop can, please feel free to present your perspective.

Seems like our newbie friend Don, is getting help from one of the top

CML experts.

Good luck!

JM

> >

> > 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

> >

>

>

>

>

>

>