Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Terry: I have very terrible side effects with Gleevec and discussed moving to AMN107 at my latest appointment at MD in Houston, Texas. Their recommendation is that anyone who gets good results from Gleevec should not consider moving to AMN107 or Sprycel. They should only do so if they are unresponsive or loose their responsiveness to Gleevec. One of the reasons they cited was the limited data on AMN107 and Sprycel and the extensive data they have on Gleevec and said " we don't want you to be a test case " . They went through the major side effects with both drugs and the things to watch and said that ultimately it was an issue for me and my local oncologist. I was not familiar with any deaths during treatment. I wish you good luck with your decision. I hope you find was is best for you. Matt ville, Florida In a message dated 3/26/2007 9:35:45 P.M. Eastern Daylight Time, terryjeanw@... writes: Hello everyone! My name is Terry Whelan and I live in Mount Pearl, Newfoundland and Labrador, Canada. I am 59 and was diagnosed in Oct. of 2002. I went the normal route of Hydrea and Interferon, and of course paid the price in side effects. I have been on Gleevec for about 2 years and although I am not getting bad results my Dr. would like me to try AMN107 which is in clinical trials. I am all for it, I think. 8-) I know other CMLers did the same for all of us on Gleevec and would like to try and do my part. I have the consent form and am looking it over and talking to my family and my family Dr. The only problem I can see is that in a previous trial theree were 7 fatalities, 3 of which were not attributed to the trial and 4 that were inconclusive as to the part paid. Here in Canada there will be 60 participants from 20 centers.I will ask tomorrow about the number of participants in the previous study, but if it was around the same number that seems like more that 10% fatalities. I guess I am using all of you as my sounding board, and asking if any of you have nowledge of AMN107 and if you do please let me know what you have experienced or heard. Thanks for any help you can offer. Best regards and lets keep going until CML is not such a dread disease. Terry _Messages in this topic _ (/message/5219;_ylc=X3oDMTM1ZDJ0dTh1BF9TAzk3Mz\ U5NzE0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTY yOARtc2dJZAM1MjE5BHNlYwNmdHIEc2xrA3Z0cGMEc3RpbWUDMTE3NDk1OTI4NAR0cGNJZAM1MjE5) (1) _Reply (via web post) _ (/post;_ylc=X3oDMTJxb2xjZWUzBF9TAzk3MzU5NzE0BG\ dycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARtc 2dJZAM1MjE5BHNlYwNmdHIEc2xrA3JwbHkEc3RpbWUDMTE3NDk1OTI4NA--?act=reply & messageN um=5219) | _Start a new topic _ (/post;_ylc=X3oDMTJma2tidWZ1BF9TAzk3MzU5NzE0BG\ dycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyO ARzZWMDZnRyBHNsawNudHBjBHN0aW1lAzExNzQ5NTkyODQ-) _Messages_ (/messages;_ylc=X3oDMTJmcWQwYzAxBF9TAzk3MzU5Nz\ E0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZnRyBHNsawN tc2dzBHN0aW1lAzExNzQ5NTkyODQ-) | _Files_ (/files;_ylc=X3oDMTJnZmJwOWhiBF9TAzk3MzU5NzE0B\ GdycElkAzE0NzYyODAxBGdycHNwSWQDMT cwNTA2MTYyOARzZWMDZnRyBHNsawNmaWxlcwRzdGltZQMxMTc0OTU5Mjg0) | _Photos_ (/photos;_ylc=X3oDMTJmNHVmbTIyBF9TAzk3MzU5NzE0\ BGd ycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZnRyBHNsawNwaG90BHN0aW1lAzExN zQ5NTkyODQ-) | _Links_ (/links;_ylc=X3oDMTJnOWJhN3UxBF9TAzk3MzU5NzE0B\ GdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMD ZnRyBHNsawNsaW5rcwRzdGltZQMxMTc0OTU5Mjg0) | _Database_ (/database;_ylc=X3oDMTJkcmUxbmNqBF9TAzk3MzU5Nz\ E0BGdycElkAzE0NzYyO DAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZnRyBHNsawNkYgRzdGltZQMxMTc0OTU5Mjg0) | _Polls_ (/polls;_ylc=X3oDMTJnazYxMDNoBF9TAzk3MzU5NzE0B\ GdycElkAzE0NzYyODAxBGdycHNwSWQDMTcwNTA2MTYyOARzZWMDZnRyBHNsawNwb2xscw RzdGltZQMxMTc0OTU5Mjg0) | _Calendar_ (/calendar;_ylc=X3oDMTJla3IxZTJsBF9TAzk3MzU5Nz\ E0BGdycElkAzE0NzYyODAxBGdycHNwSWQDMTc wNTA2MTYyOARzZWMDZnRyBHNsawNjYWwEc3RpbWUDMTE3NDk1OTI4NA--) ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Hello everyone! My name is Terry Whelan and I live in Mount Pearl, Newfoundland and Labrador, Canada. I am 59 and was diagnosed in Oct. of 2002. I went the normal route of Hydrea and Interferon, and of course paid the price in side effects. I have been on Gleevec for about 2 years and although I am not getting bad results my Dr. would like me to try AMN107 which is in clinical trials. I am all for it, I think. 8-) I know other CMLers did the same for all of us on Gleevec and would like to try and do my part. I have the consent form and am looking it over and talking to my family and my family Dr. The only problem I can see is that in a previous trial theree were 7 fatalities, 3 of which were not attributed to the trial and 4 that were inconclusive as to the part paid. Here in Canada there will be 60 participants from 20 centers.I will ask tomorrow about the number of participants in the previous study, but if it was around the same number that seems like more that 10% fatalities. I guess I am using all of you as my sounding board, and asking if any of you have nowledge of AMN107 and if you do please let me know what you have experienced or heard. Thanks for any help you can offer. Best regards and lets keep going until CML is not such a dread disease. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Hi Terry, I think that there has to be a clinical reason for you to participate in the trial. You haven't indicated what your Ph+ counts are. If they are at Zero, then the only reason to go into the trial would be to lessen your side effects. If you are not at Zero, are you close? Discuss it with your doctor. Deaths during clinical trials are not uncommon. You need to know what the circumstances were. Often patients who are in blast crisis with no other options will try a clinical trial. This tends to skew the results. And thank you for considering going into a clinical trial. This is a wonderful thing that you do for the CML community. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] AMN107 Hello everyone! My name is Terry Whelan and I live in Mount Pearl, Newfoundland and Labrador, Canada. I am 59 and was diagnosed in Oct. of 2002. I went the normal route of Hydrea and Interferon, and of course paid the price in side effects. I have been on Gleevec for about 2 years and although I am not getting bad results my Dr. would like me to try AMN107 which is in clinical trials. I am all for it, I think. 8-) I know other CMLers did the same for all of us on Gleevec and would like to try and do my part. I have the consent form and am looking it over and talking to my family and my family Dr. The only problem I can see is that in a previous trial theree were 7 fatalities, 3 of which were not attributed to the trial and 4 that were inconclusive as to the part paid. Here in Canada there will be 60 participants from 20 centers.I will ask tomorrow about the number of participants in the previous study, but if it was around the same number that seems like more that 10% fatalities. I guess I am using all of you as my sounding board, and asking if any of you have nowledge of AMN107 and if you do please let me know what you have experienced or heard. Thanks for any help you can offer. Best regards and lets keep going until CML is not such a dread disease. Terry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2007 Report Share Posted March 27, 2007 Hello Terry name is Skip and I live in NS and go to the VG 4th floor not sure if you do as well, I see a lot of Newf's there. I am on AMN107 and have been for a while. I find no side effects to speak of and I appear to be find except for needing transfusions a lot. But that was the fault of Gleevec Do you come to NS for your treatment if so which Dr. and is your study nurse Angie? anyway you can read about my progress at http://easyskip.tripod.com I was given the choice to go on AMN107 or stay with gleevec, guess only you can make that choice SkipD --- Terry Whelan <terryjeanw@...> wrote: > Hello everyone! > > My name is Terry Whelan and I live in Mount Pearl, > Newfoundland and > Labrador, Canada. > I am 59 and was diagnosed in Oct. of 2002. > I went the normal route of Hydrea and Interferon, > and of course paid > the price in side effects. > I have been on Gleevec for about 2 years and > although I am not getting > bad results my Dr. would like me to try AMN107 which > is in clinical > trials. > I am all for it, I think. 8-) > I know other CMLers did the same for all of us on > Gleevec and would > like to try and do my part. > I have the consent form and am looking it over and > talking to my > family and my family Dr. > The only problem I can see is that in a previous > trial theree were 7 > fatalities, 3 of which were not attributed to the > trial and 4 that > were inconclusive as to the part paid. > Here in Canada there will be 60 participants from 20 > centers.I will > ask tomorrow about the number of participants in the > previous study, > but if it was around the same number that seems like > more that 10% > fatalities. > I guess I am using all of you as my sounding board, > and asking if any > of you have nowledge of AMN107 and if you do please > let me know what > you have experienced or heard. > Thanks for any help you can offer. > Best regards and lets keep going until CML is not > such a dread disease. > Terry > > ________________________________________________________________________________\ ____ It's here! Your new message! Get new email alerts with the free Toolbar. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2007 Report Share Posted May 26, 2007 Hi Terry, Jerry Mayfield's newcmldrug site has a section devoted to AMN107. http://www.newcmldrug.com/amn_Discuss/default.asp It will answer most of your questions. Also check our fellow Canadian Skip Duffie's web site at http://easyskip.tripod.com/ He is on AMN107 and has an amazing story to tell. Good luck, Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] AMN107 Hello all, I have been approved for the trial group for AMN107 and I start Monday. I am wondering if any of you who are on it call fill me in on what side effects can be looked for. I will appreciate any information you can offer. Thanks and Good Luck to us all! Terry Quote Link to comment Share on other sites More sharing options...
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