Holly, This is very helpful! Thank you!
I don't know our doctor well enough yet to be able to gauge how much of a specialist she is; I must say, however, she is a hematologist/oncologist at the Markey Cancer Center in Lexington, KY, and that is a pretty highly-rated place. She herself exudes an aura of competence and knowledge, but we have only seen her once since James was released from the hospital on July 8; as I say, we see her again Monday. Her office could not be more accommodating to us as patients; (she has been on vacation, and I am glad she was; I cannot imagine the strain of her work). My point is, I think I need to get to know her better and spend more time asking questions, before I bail out and see if there is someone better. I am so *ignorant* of all of this, that I am not even sure how to find a Gleevec or CML specialist. In fact, this doctor seems so knowledgeable, I think she may be one! :-) Anyway, all of this feedback here in this group is such a blessing, so reassuring, and so uplifting. God bless you today; thank you for taking the time to post! Renee --- In [email protected], Holly Baker <[EMAIL PROTECTED]> wrote: > Renee, > I have been on Gleevec since 2001 even before it was > approved by the government. The Gleevec caused my > anemia. My doctor lowered my dose from 600 to 400 and > after a couple of months my red blood cell counts went > back to normal but it took almost a year for > everything to even out. If your doctor is not a > leukemia specialist I would arrange for your son to > find one and see them at least once in a while even if > you have to travel to do it. I think that would > aleviate some of your fears. I had one of the leading > specialists who was part of the original study at the > Siteman Cancer Center in St. Louis. Unfortunately, Dr. > Khoury is no longer in that position but I still go to > the same group of doctors. I was just lucky enough to > live in the suburbs of St. Louis because the old > protocol interferon deteriorated my leg muscles and I > became intolerant of it. Lucky for me I was put in > the Gleevec study before I had to have a stem cell > transplant. I achieved remission after 3 months and > the doctor thought I was in blast crisis when I was > diagnosed. There are still alot of questions about > Gleevec and how it affects people so don't be > surprised if your doctor doesn't give detailed answers > to questions because they just don't know the answers. > Good luck and God bless, > Holly > > --- Renee Bush <[EMAIL PROTECTED]> wrote: > > > Okay, my 19 yo son was Dx on July 4, 2005. At the > > time, he had been > > admitted to the hospital with suspected meningitis, > > but it was his wbc > > that got him into a cancer treatment center, with > > the CML diagnosis. > > The highest his wbc got was 110,000. He went on > > Gleevec July 8, with > > a wbc of 41,000. He was only on oral chemo for > > about two weeks, > > becuase his wbc dropped to 7,900 pretty fast. It > > stayed there for a > > week, then went to 3,900, then to 3,200, and today, > > 2,200. When we > > call the doctor's office,the nurse confers with her, > > then calls us > > back, and tells us to continue with the 400 mg. of > > Gleevec, especially > > since we are scheduled to see the doctor in three > > days, Monday, the > > 15th of August. Meanwhile, they tell us the rest of > > his bloodwork > > looks good. To me, it does not. He is anemic--and > > we were told, in > > the hospital, that would take care of itself, as his > > wbc went down. > > This has not happened. He is bummed out and tired, > > due to go back to > > his sophomore year of college in one week--thank > > God, he is only a > > half hour away, but does live in the dorms, due to > > his scholarships > > and his R.A. position there--and he is slightly > > depressed. > > > > My question is, why is he still on 400 mg of > > Gleevec? It sure looks > > like it has more than done its job! I want the dose > > reduced, but the > > office keeps telling us, no, wait till he sees her > > on Monday. I hate > > to sound like a raving paranoiac, but I sometimes > > wonder if he is not > > just a guinea pig for this medicine, thankful as I > > am for Gleevec. > > > > Someone who has been there and done that, I would > > sure love to hear > > from you! It is 4 A.M., and I have not slept yet. > > I thought I had > > pretty strong personal faith, but this one is > > keeping me awake. > > > > Thanks in advance, > > > > Renee,slightly tearful > > > > > > > > > __________________________________________________ > Do You Yahoo!? > Tired of spam? Yahoo! Mail has the best spam protection around > http://mail.yahoo.com ------------------------ Yahoo! Groups Sponsor --------------------~--> <font face=arial size=-1><a href="http://us.ard.yahoo.com/SIG=12kdqdh3b/M=362335.6886443.7839732.1589681/D=grphealth/S=1705061628:TM/Y=YAHOO/EXP=1123957997/A=2894365/R=0/SIG=1322kcnmd/*http://www.networkforgood.org/topics/health/?source=YAHOO&cmpgn=GRP&RTP=http://groups.yahoo.com/";>Has someone you know been affected by illness or disease? Network for Good is THE place to support health awareness efforts</a>.</font> --------------------------------------------------------------------~-> New! 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