Okay, I have lurked long enough. I want to respond to everyone and just kept quiet. My husband and I ventured out for my bi-annual sixth month check up from Miami, Florida to Portland, Oregon to see Dr. Druker. Of course, my status remains super. I listen to your stories of woe and wonder what I would do if I was in your shoes.
Jeff, in regards to this trial...I would ask or go see Dr. Druker if you have the 1315 mutation. While we were out there, Dr. Druker was estatic! Since last Spring, he was working on a drug that was thought to only work in combination with another drug, whether it was gleevec or dastinab or nilotinab, etc. However, his drug is working on mutations by itself!!! This is wonderful news he says to those who have mutations. I am happy that I am doing so well. I was also told I would never need another BMB/BMA as long as my numbers stay the same! I still get eyebleeds, and a little swelling. I have had all the side effects from Gleevec. So if you ever need to write me for the answers that Dr. Druker and Carolyn (Dr. Druker's assisant/nurse) gave to me please email me at educatorsu...@aol.com. I would be please to help you out. I had everything BUT the rash!!! When I say everything, I mean everything. Dr. Druker says that I was his top 10% for all patients to have so many reactions. Now, I am really fairing pretty nicely! Hugs, Susan Rosenthal Miami, Florida dx. January 8th, 2003 Began Gleevec: 4/10/2003 Ceased Gleevec: 4/21/2003 "Rebegan" Gleevec: 4/25/2003 Tranfusion dependent: May 2004-November 2005 Gleevec reduced to 400mg: 8/2004 Gleevec reduced to 300mg: 8/2005 Gleevec reduced to 200/300 alternating days: November 7, 2006 to present day except now I am taking 250 every day now... Still undetectable 9/24/2008 March 27, 2008 BMB/BMA PCRU!!! FISH 0% YEAH!!!!! Next appointment with Dr. Druker: Thursday, October 23, 2008 Gleevec PK Level taken every 3 months monitored by Novartis and Dr. Druker. PCR-in June was a weak positive but Dr. Druker felt that it was the same as undetectable...but will repeat PCR sooner in August 2008 I was told that I would not need another BMB as long as my numbers stay where they are!!! YIPEEEE! --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
