Thank you very much Nancy, Your post helped me a bunch. It is very scary for us newbies when we hear of so many folks loosing the battle or even continuing to struggle because of resistance, mutations or non tolerance. You tend to ask yourself, am I next? Will I be one that responds well or be a turtle or have a mutation or become resistant? I mentally stay positive, but when you get a few days of sad news your attitude wavers a little. So when we say 'Warrior', the battle is more than just fighting the disease. It's fighting to staying healthy, or fighting a cold when we get one. It's fighting to keep the right attitude even on the bad days. It's fighting to find the strength to exercise. It's fighting the fatigue. It's fighting the urge to be scared all the time. It's fighting to lead a 'normal life. I want to thank all the CML veterns who have fought the long fight. I know I'm just beginning, but it does help to know you all have stayed in the fight for so many years. It gives us newbies the courage, strength & hope we need to follow in your footsteps. Brenda Mansfield, Tx dx 5/04 Gleevec 6/04 CCR 12/04
--- In [email protected], "hey00nanc" <[EMAIL PROTECTED]> wrote: > > --- In [email protected], Penny Rivers <[EMAIL PROTECTED]> wrote: > I don't mean to > sound depressing, for I am usually a very upbeat and positive > individual, which is what got me through CML and the destruction of > our home and Island, but the answer that came to me was "yes" it can > happen to any of us. > > _______________ > > Dear Penny and others, > I want to offer some perspective about the recent losses of our fellow > CML warriors Marque and Sandra....both deaths were a shock to the list > and we will miss them both deeply. But, I want to give a little > history....so that those solidly in chronic phase and especially the > newbies do not overly worry about their own situation. > > Marque was a good friend and I know that he was considered to be in > accelerated phase (because of elevated basophils) when he started > Gleevec at 600mg in an OHSU trial several years ago. Gleevec was > initially effective for him and he got down to about 25% ph+, then he > lost his remission and was back to 75% and above. He also had double > phillies and I believe he also had a trisomy. His disease was not > stable. When Gleevec stopped working for him and did not control his > white count, he added hydrea......then Dr. Druker suggested that one > option was to stop taking Gleevec for a period of at least 6 months to > see if he would be re-sensitived to it. Gleevec was no longer working > for Marque and he was off the drug when he died. According to his > sister, he was doing well.....then fell ill and was admitted to an ER > and died the next day apparently in blast crisis. > > I do not know Sandra's history in as much detail but I do remember > that the Gleevec trial in England for chronic had closed and she was > not going to get access to the drug.....until they determined that she > was actually in accelerated phase and they had a trial for that phase > open. A short time before her death, she apparently reported to the > list that she was nearly 100% ph+ and also needed hydrea in addition > to Gleevec to control her counts. I believe that she had a problem > with high platelets. > > My point for those of you in chronic phase....especially the newbies > just starting out on Gleevec, and those with some level of good > response to Gleevec, including a stable blood count.....your situation > is much different than Marque's or Sandra's. Typically, the > progression of CML is from chronic, to accelerated, then to blast > crisis which is usually terminal. Both of these people were considered > to be in accelerated phase when they started Gleevec and their disease > was not well controlled.......and it appears that they quickly slipped > into blast crisis at the end.....but this is not likely to happen to > most of us on the list. > > Marque and Sandra each added a lot to the list and they will be > missed. > > Nancy C. New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com CML (Chronic Myelogenous Leukemia Support List) --------------------------------- Part Of CMLHope.Com An International Community Of CML Patients For more information: http://cmlhope.com Post Message: [email protected] Subscribe: [EMAIL PROTECTED] Unsubscribe: [EMAIL PROTECTED] Change To No Mail/Web: [EMAIL PROTECTED] Change To Digest: [EMAIL PROTECTED] Change To Email: [EMAIL PROTECTED] List Help: [EMAIL PROTECTED] CML Group Web Site http://groups.yahoo.com/group/CML Yahoo! Groups Links <*> To visit your group on the web, go to: http://groups.yahoo.com/group/CML/ <*> To unsubscribe from this group, send an email to: [EMAIL PROTECTED] <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/
