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=12kb1qknn/M=362335.6886443.7839732.1589681/D=grphealth/S=1705061628:TM/Y=YAHOO/EXP=1123970046/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? 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