Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Hi Barb, Thank you for your update. I am so happy for you. Bets regards, Zavie [ ] Mutation Testing Hi all. Hope this finds everyone doing well. I just wanted to update everyone on mutation testing I had done at Dr. Sawyer's lab at UCLA in February for 2004. When the initial results came in last year, Dr. Shah - of Dr. Sawyer's lab indicated that there might be some type of Gleevec resistance that I had but he wanted to rerun the test due to potential contamination from the lab (He said there were alot of mutations in the lab that could potentially contaminate the test so they always run it twice). Of course when I heard there was a potential mutation I about flipped out. Dr. Shah told me to be patient and wait it out as they reran the test. To make a long story short, I got cold-feet and never followed up with him . . . having realized that I potentially opened up 'Pandora's Box' and at that point wasn't even sure if I wanted to know what mutations I might have . . . I know that sounds a bit naive but I didn't know if I wanted to know at that point - given that I was still responding to IM. I got up the nerve today to correspond to Dr. Shah again to see if he could give me my results. I gingerly hit the send key on the computer - still not sure I wanted to know. But, that info could potentially be very important should I need to switch to the AMN or BMS trial and should IM ever stop working. Dr. Shah's response was a breath of fresh air . . . ==================== Hello, I apologize. We did not find any evidence of kinase domain mutation in your sample. Glad to hear you are continuing to do well. Kind regards, Neil Shah ======================= As you can imagine I am very much relieved. Anyway - I wanted to share the latest and greatest with you. BTW, my latest pcr was done at OHSU. Typically they run the ultra quant test but they seemed to have problems with it so they ran a nested. I showed up " weakly positive " for the the BCR abl so I am still positive but at low levels of the disease. I'll take that news for sure. Thanks all. Just a reminder to keep Dane and Gregg - and all our other transplant family members - in your daily prayers. Sending hugs Love, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Hi Barb, Since all of us have the potential to put our heads in the sand, it's good to hear from someone who finally had the courage to come out and punch the send button to get the truth. Done sooner, it might have saved a lot of nightmares. So glad the news was good! Best, L [ ] Mutation Testing Hi all. Hope this finds everyone doing well. I just wanted to update everyone on mutation testing I had done at Dr. Sawyer's lab at UCLA in February for 2004. When the initial results came in last year, Dr. Shah - of Dr. Sawyer's lab indicated that there might be some type of Gleevec resistance that I had but he wanted to rerun the test due to potential contamination from the lab (He said there were alot of mutations in the lab that could potentially contaminate the test so they always run it twice). Of course when I heard there was a potential mutation I about flipped out. Dr. Shah told me to be patient and wait it out as they reran the test. To make a long story short, I got cold-feet and never followed up with him . . . having realized that I potentially opened up 'Pandora's Box' and at that point wasn't even sure if I wanted to know what mutations I might have . . . I know that sounds a bit naive but I didn't know if I wanted to know at that point - given that I was still responding to IM. I got up the nerve today to correspond to Dr. Shah again to see if he could give me my results. I gingerly hit the send key on the computer - still not sure I wanted to know. But, that info could potentially be very important should I need to switch to the AMN or BMS trial and should IM ever stop working. Dr. Shah's response was a breath of fresh air . . . ==================== Hello, I apologize. We did not find any evidence of kinase domain mutation in your sample. Glad to hear you are continuing to do well. Kind regards, Neil Shah ======================= As you can imagine I am very much relieved. Anyway - I wanted to share the latest and greatest with you. BTW, my latest pcr was done at OHSU. Typically they run the ultra quant test but they seemed to have problems with it so they ran a nested. I showed up " weakly positive " for the the BCR abl so I am still positive but at low levels of the disease. I'll take that news for sure. Thanks all. Just a reminder to keep Dane and Gregg - and all our other transplant family members - in your daily prayers. Sending hugs Love, Barb ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hello Barb, Glad to hear that " All's well that ends well " with regards to your mutation testing. Your post does bring up some good points. If I am not mistaken around that time last year mutation testing was still rather " new " and from what I learned at ASH I think there was still a lot of debate about what to do about mutation testing. After much more consideration and research it seems that what they/we have learned is that mutations that develop may be resistance to Gleevec at the 400mg dose, but not to the 600 or 800 mg dose. Which would have been the case with you as you are still responding well to IM. Are you still on the 400mg dose of IM? Thanks for your questions off list, I am having trouble with my server and haven't been able to reply directly to you. Cheers and thanks for the sharing this with us. Cheryl-Anne > As you can imagine I am very much relieved. Anyway - I wanted to > share the latest and greatest with you. BTW, my latest pcr was done > at OHSU. Typically they run the ultra quant test but they seemed to > have problems with it so they ran a nested. I showed up " weakly > positive " for the the BCR abl so I am still positive but at low > levels of the disease. I'll take that news for sure. > > Thanks all. Just a reminder to keep Dane and Gregg - and all our > other transplant family members - in your daily prayers. > > Sending hugs > Love, > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 Hi Barbara -- Glad you got your breath of fresh air. Thanks for the update. God bless. Kathy > Hi all. Hope this finds everyone doing well. > > I just wanted to update everyone on mutation testing I had done at > Dr. Sawyer's lab at UCLA in February for 2004. When the initial > results came in last year, Dr. Shah - of Dr. Sawyer's lab indicated > that there might be some type of Gleevec resistance that I had but he > wanted to rerun the test due to potential contamination from the lab > (He said there were alot of mutations in the lab that could > potentially contaminate the test so they always run it twice). Of > course when I heard there was a potential mutation I about flipped > out. Dr. Shah told me to be patient and wait it out as they reran > the test. To make a long story short, I got cold-feet and never > followed up with him . . . having realized that I potentially opened > up 'Pandora's Box' and at that point wasn't even sure if I wanted to > know what mutations I might have . . . I know that sounds a bit naive > but I didn't know if I wanted to know at that point - given that I > was still responding to IM. > > I got up the nerve today to correspond to Dr. Shah again to see if he > could give me my results. I gingerly hit the send key on the > computer - still not sure I wanted to know. But, that info could > potentially be very important should I need to switch to the AMN or > BMS trial and should IM ever stop working. > > Dr. Shah's response was a breath of fresh air . . . > ==================== > Hello, > > I apologize. We did not find any evidence of kinase domain mutation > in your sample. > > Glad to hear you are continuing to do well. > > Kind regards, > > Neil Shah > ======================= > > As you can imagine I am very much relieved. Anyway - I wanted to > share the latest and greatest with you. BTW, my latest pcr was done > at OHSU. Typically they run the ultra quant test but they seemed to > have problems with it so they ran a nested. I showed up " weakly > positive " for the the BCR abl so I am still positive but at low > levels of the disease. I'll take that news for sure. > > Thanks all. Just a reminder to keep Dane and Gregg - and all our > other transplant family members - in your daily prayers. > > Sending hugs > Love, > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2005 Report Share Posted May 3, 2005 dear barb i feel relieved with you together. enjoy spring time in your beatifull state hugs giora [ ] Mutation Testing Hi all. Hope this finds everyone doing well. I just wanted to update everyone on mutation testing I had done at Dr. Sawyer's lab at UCLA in February for 2004. When the initial results came in last year, Dr. Shah - of Dr. Sawyer's lab indicated that there might be some type of Gleevec resistance that I had but he wanted to rerun the test due to potential contamination from the lab (He said there were alot of mutations in the lab that could potentially contaminate the test so they always run it twice). Of course when I heard there was a potential mutation I about flipped out. Dr. Shah told me to be patient and wait it out as they reran the test. To make a long story short, I got cold-feet and never followed up with him . . . having realized that I potentially opened up 'Pandora's Box' and at that point wasn't even sure if I wanted to know what mutations I might have . . . I know that sounds a bit naive but I didn't know if I wanted to know at that point - given that I was still responding to IM. I got up the nerve today to correspond to Dr. Shah again to see if he could give me my results. I gingerly hit the send key on the computer - still not sure I wanted to know. But, that info could potentially be very important should I need to switch to the AMN or BMS trial and should IM ever stop working. Dr. Shah's response was a breath of fresh air . . . ==================== Hello, I apologize. We did not find any evidence of kinase domain mutation in your sample. Glad to hear you are continuing to do well. Kind regards, Neil Shah ======================= As you can imagine I am very much relieved. Anyway - I wanted to share the latest and greatest with you. BTW, my latest pcr was done at OHSU. Typically they run the ultra quant test but they seemed to have problems with it so they ran a nested. I showed up " weakly positive " for the the BCR abl so I am still positive but at low levels of the disease. I'll take that news for sure. Thanks all. Just a reminder to keep Dane and Gregg - and all our other transplant family members - in your daily prayers. Sending hugs Love, Barb ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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