RE: RE: Help When Newly Diagnosed

[Guest guest]

Hi all,

I think that Dianne has already taken the most important step . and that was

to contact this CML support group.

Like you Suzzie I failed on interferon and turned to the Internet to get

information. I found several CML support groups that were invaluable. The

burning question nine years ago was, where were they doing STI571 trials? I

went to see Dr. Druker in Portland and was able to get into the 113 expanded

access trial. The rest is history.

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

suzzienovember

Sent: August 5, 2009 5:20 PM

Subject: [ ] RE: Help When Newly Diagnosed

I think Bev Blair may have started a new topic that could be very important

to newbies. What she said, hit home with me. I will make it brief. When I

had no choices after Interferon and Ara-C did not work for me any longer. I

was put on Hydrea. I knew I was not a candidate for a BMT, and I did all my

own research until I found the STI-571 trial, and then had to fight to get

into it.

So many people, do not know how to look for these things.

DO NOT DEPEND ON YOUR DOCTOR. YOU HAVE TO BE YOUR OWN ADVOCATE!!

That was 10 years ago for me just like Bev.