Dear Lynne I am sorry you are having such bad side effects with Glivec, especially as it is working so well on your cml. This must be so frustrating for you. Richard has been off Glivec since September 2004, just on Hydrea. Whilst this has been frustrating having to have blood counts every couple of days and adjusting the dose so often due to counts bouncing, he is still in Chronic Phase and feels very well. He didn't have a response to Glivec to lose as he has a P loop mutation, and is now awaiting BMS in the UK too. I am sure you will enjoy your time of Glivec and feel better. BMS is not too far away and I am positive you will get on the "intolerant" arm of the trial and do very well. Keep strong, it has been hard for Rich, but we are getting there. Lots of love Annette in the UK xx __________________________________________________________________
--- In [email protected], "tinasierra2002" <[EMAIL PROTECTED]> wrote: > > Dear Lynne, > I wish you nothing but the BEST as you take this new road. > It really sounds like a good plan. It would be wonderful for you to > get rid of those side effects and be able to really live life to the > fullest. > We are overdue to get > together but please feel free to call or email me anytime. > Much love, > Tina > > --- In [email protected], [EMAIL PROTECTED] wrote: > > Well, I am off of Gleevec once again. I went to Umass to check > out the > > lymph nodes, to find the reason that I am suffering so much and > the oncologist is > > taking me off of Gleevec. I am worried that this will affect my > status on > > the trial, but I think the doctor is steering me away from Gleevec > permanently. > > I have finally made moves toward Dana Farber, successfully this > time, and > > am hoping to get on the BMS Trial wait list. The trial is set for > April, > > hopefully, though it is not yet written in Stone. Speaking of > which, I have an > > appointment with Dr. Stone and I feel very confident that I am at > a crossroads > > here. > > > > Because of my symptoms, the doctor has ordered a brain scan, MRI, > and echo > > for the heart, although he does not think that CHF is present, and > nor does he > > feel that the edema that can be so tough on Gleevec patients is > causing my > > problems. But, from what I am reading on the list, many patients > report > > similar problems to what I have, and their doctors say it is edema- > related. > > I will be having some tests done before I go to Belize but I think > I will be > > having the marrow biopsy and cytogenetics after I come back in > March. I am > > to stay off of Gleevec for a couple of weeks , and though I look > forward to > > the break, I am a little nervous this time. > > > > I shall endeavor to have a positive attitude throughout all of > this, but I > > do worry that as time goes on, Gleevec is going to be phased out of > my > > treatment. It has proven effective thus far, but not effective > enough to put me > > into molecular remission. I have great hope that the BMS drug will > be an option > > for me and for those of us who find Gleevec intolerable over long > term. I so > > wish that I could tolerate the side effects more gracefully but > that has not > > been an option for me lately. It gave me a great sense of peace > over these > > past four years to know that it was working, and now that is > coming to an end. > > I will report to the group any information I can glean from Dana > Farber for > > those of us living in New England and interested in making the > conversion. > > It would be a welcome change to have a drug that has less side > effects and > > works more efficiently. - Lynne A. ------------------------ Yahoo! Groups Sponsor --------------------~--> Give the gift of life to a sick child. Support St. Jude Children's Research Hospital's 'Thanks & Giving.' http://us.click.yahoo.com/3iazvD/6WnJAA/xGEGAA/8zSolB/TM --------------------------------------------------------------------~-> 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/
