Dear Susan, It is nice to see your name on the postings.It has been a long time since I have heard from you. Your post almost makes me regretably sad that I quit the gleevec protocol. But even on 300 mg a day, the side effects were intolerable. My PK tes showed 1100 so it wasn't that. I also know that my counts did not drop severely. I do enjoy the PCRU status since March of 2003 and it remains. I too think I could not deal with some here who deal with the problems they have. I feel so incedibly lucky. I have not been told ' no nore BMA or BMB' but am going to suggest it when I go back in Feb. The last one I had, I had a severe reaction to the lidocaine ( seizures) so I am not anxious to repeat that again. Tasigna seems to be doing okay by me. I am on 400 a day - taken as soon as I wake up. The muscle cramps, a rash in my scalp and joint pain are there still but not so intense. I am grateful I even had a choice.... Be well all of you! Happy New Year and here's to a cure in 2009!!
Barb Stanley 57 DX 5-5-2002 age 51 Hydroxurea 5-5-02-6-3--02 Gleevec 400 mg 6-11-02 MMR 8-1-02 CCR 12-10-02 PCRU 3-17-03 Gleevec break: Feb. 15 - May 1-2007 (severe side effects) Gleevec 300 mg. May 1 - Dec. 15- 2007 800 mg tasigna Dec. 27 -Jan 12 ( stopped because of side effects) 400 mg tasigna Jan 20 - present (some side effects) Continuing strong PCRU ( with some side effects) On Dec 15, 7:39 pm, educatorsusan <[email protected]> wrote: > 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 [email protected]. 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 [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
