Hi Mary K, Thanks for this! Your suggestions to make a list is a great one; I could ask a friend to go with me--I am a widow--but I hate to make someone else sit around that long! I am actually quite cheerful, usually, at the doctor's, because she seems so competent that it lifts my spirits just to be in the same room with her. But I do have a list, and am adding to it.
THANK YOU for saying you felt as if you had the flu for a while! That is exactly how I would describe Jmaes right now. I am happy to report, this evening, that I made him a very iron-rich, cruciferous-veg-included dinner; well, of course, we all partook! We had t-bone steaks, huge baked potato, cauliflower, broccoli, and watermelon slices, and he ATE very well! He is thin as a rail anyway, and 6'3", so he really *looks* lean; I was delighted to see him eat, and he said he could really enjoy eating better all the time. This is HUGE, because James loves junk food. Even if I do not make junk available, hey, he is 19, he drives, you know how that goes... but he feels the need to stop saying Why Me When Everyone ELSE Can Eat What they want, and seems to have turned that corner to accepting things have changed somewhat. What a blessing for me. Thanks again, and have a wonderful evening. Renee, Feeling Very Thankful For This Group Renee--- In [email protected], "knottsm156" <[EMAIL PROTECTED]> wrote: > Hi Renee: > > I am so sorry to hear aboutyour son having CML and at such a young > age. I can understand your panicky feelings at this time there is > so much to learn and understand. Believe me it gets better. > > I have been on Gleeevec for over 3 years and I know sometimes it is > hard to tolerate. I did go off of it for a couple weeks so my > counts could stabalize. What happens is the wbc crowd out the other > cells then when Gleevec suppresses the production of these cells it > takes awhile for the bone marrow to recover. Other than that I have > stayed on 400 mgs for the entire time and plan to stay on it for the > rest of my life. > > What helped me in the beginning was making a list of questions for > the oncologist and having my husband come with me for those first > few meetings because I was so stunned by it all. Maybe another > family member or friend can come with you? > > Also I felt like I had the flu for about 3 weeks when I first > started Gleevec. I thought how am I going to live the rest of my > life feeling this way? The over all flu feeling went away. There > are some side effects from taking Gleevec and they vary person to > person. They also seem to come and go in cycles. So tell your son > to hang in there it will get better. > > Hope he starts to feel better soon and your visit on MOnday with the > oncologist helps ease some of your fears. > > Your son is definitely not a guinea pig for Gleevec. It is a new > drug but an amazing one and the science behind it is fascinating. I > don't think reducing the dose is a good idea. Studies have shown > that less than 400 mgs is not enough. > > By the way my oncologist always tells me my bloodwork looks good > even when I am a little anemic or something else is low. I think > what he means is that the bloodwork looks good for someone with CML > who is on Gleevec! > > Please keep us posted on your son and let us know how the visit on > MOnday goes. > > Mary K > > > 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 ------------------------ Yahoo! Groups Sponsor --------------------~--> <font face=arial size=-1><a href="http://us.ard.yahoo.com/SIG=12ksv2b1b/M=327951.6903888.7846657.1589681/D=grphealth/S=1705061628:TM/Y=YAHOO/EXP=1123980785/A=2896150/R=0/SIG=11dd2v0rf/*http://www.facetheissue.com/depression.html";>Ever feel sad or cry for no reason at all? Depression. Narrated by Kate Hudson</a>.</font> --------------------------------------------------------------------~-> 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. 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