Hello pat, sorry to hear that you're going through all this. Maybe it's a good job that your doctor's leaving you'll maybe get someone a bit more competent and supportive. I'm sure that once Dr Druker gets your file and takes you in hand, you'll soon be on track for recovery, he'll be able to give you the care and the drugs you need, hang in there - there are so many treatment options available. Barbara - France--- In [email protected], pat reynolds <[EMAIL PROTECTED]> wrote: > Hello to Everyone, I apologize for not posting more > but the increase to 800mg has me really dragging, and > I've been suffering with a pretty severe kidney > infection among many other little things too numerous > to mention them all now. > > To refresh everyone's memory, I have never had a good > response to the Gleevec, and I am now on 800mg. I > called this number for the BMS trial location in my > area, which also asked me for my zip code, and was > told there was not a facility recruiting in this area > YET and for me to discuss it with my oncologist. I did > that today at my appointment, and he went and > discussed it with some of the other doctors, and told > me that Vanderbilt would "probably" be conducting the > trial but it wasn't guaranteed yet, and "If" it was, > it could be months, 3 to 6 months or longer before it > got set up or maybe not at all. I told him I didn't > mind waiting but would he please just help me get in > when it did get started. He explained to me that I had > been on the Gleevec for a year now, and if the > medicine was going to work at all, it would have by > now and that I am progressing rather than getting > towards remission, and that I can't put off for > another 6 months making a decision, I've either got to > get in the BMS drug trial SOMEWHERE NOW (other than > waiting on the one to get to my area) or have a BMT. > He expressed it as though I might not have six months > left to live, which has me in such a state of panic > and fear. He is going to call M D Anderson and consult > with them to see if I could get in there and soon. He > basically told me to go home and make preparations to > get things lined up for relocation for a few months or > to prepare for BMT. I won't have today's blood work > back for 2 weeks to know if I've improved or backslid > again. The entire time I have been on Gleevec, tests > show one month I have improved, and then two months > later, I have went backwards again. To give an > example, and btw, none of my tests appear written or > expressed as most of everyone's else's I've noticed: > 4-15-04 6000 cells containing BCR-ABL were found; > 5-19-04 BCR-ABL positive for 1100 cells; 6-02-04 > BCR-ABL positive in 149 cells; 6-24-04 BCR-ABL > positive for 368 cells; More recent 9-04 BCR-ABL > positive for 764 cells; 11-04 BCR-ABL positive 3,168 > cells which at this time dosage was increased to > 800mg. Has anyone who has been slow to respond to > Gleevec, did you fluncuate like this? As if all this > information didn't make my day, my oncologist informed > me that he would be leaving the end of February to > take a clinical director of BMT services at the > University of Michigan, so I will be assigned a new > doctor. I was told to call in for an appointment as it > was undetermined as yet who I would be seeing, and > perhaps I might be in a clinical trial and not need an > appointment back at Vandy for several months. If > anyone has experienced such a response with the > Gleevec, please email me privately and explain to me > if yours are even somewhat similar. I got my medical > records today and I am going to be sending them to Dr. > Druker right away as this is what he advised me to do > when I got them. I'm also going to call MD Anderson > myself. I sure had my hopes up for a trial location in > my area which I'm almost certain will be Vanderbilt, > as they do a lot of clinical trials and research, and > it is a teaching hospital. I had been told previously > that I have more than one mutation so today I asked > what was the name of the mutation and he studdard and > stampered around and told me, he didn't know. Is there > testing to determine which mutation you have? And if > so, why wouldn't he have done this already? This was > one of the questions Dr. Druker asked, which mutation > I had and I couldn't tell him and still can't. Please > if there is anyone who has been through what I'm going > through with their response to Gleevec, please don't > hestitant to contact me and any opinions or > suggestions anyone has to offer please speak up. I'm > literally terrified, again and I really could use > everyones' support, and knowledge. Thank you all for > being here for me. Love, Peace & Hope, Pat > > > > __________________________________ > Do you Yahoo!? > Meet the all-new My Yahoo! - Try it today! > http://my.yahoo.com
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