Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi Ray, If you planned on starting the trial on October 22 then waiting another 2 weeks before starting will not make any difference. Also, since we know that starting on a dose of 600 mg brings a much quicker response than 400 mg, waiting the extra time to start Gleevec will make up for the extra delay in starting Gleevec. In the early days many of us waited 3 months and more before we were able to start Gleevec. I waited 14 months before starting Gleevec. If this is a big concern for you, I would contact Dr. directly and ask him the question. Zavie Zavie (age 69) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 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 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of Karljohn75 Sent: October 11, 2007 1:12 AM Subject: [ ] Need your advice Hello everyone, I need your opinion if I should still join the clinical trial. This trial will allow me to start on Glivec at 600mg daily and to be swtiched on to Nilotinib if I am not respoding well to Glivec. It has been postponed 3 times already. I was told that it will start on October 22 but now it was moved to November 8, 2007. I was diagnosed with CML August 26, 2007 and has been taking Hydrea since. My WCC is now back to normal. I was given an option to wait until November 8 or I can start with Glivec 400 mg daily next week. I need your thoughts regarding this matter guys... Take care and God speed. Ray Age: 32 years old Dx: August 27, 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Thanks Zavie, I'm just getting quite impatient although Hydrea is keeping the numbers/WCC within normal limits since I was diagnosed 6 weeks ago. The trial is suppose to start 1st week of October then it was moved to Oct 22 then its November 8 now. Hang on everyone. Ray > > Hi Ray, > > If you planned on starting the trial on October 22 then waiting another 2 > weeks before starting will not make any difference. Also, since we know that > starting on a dose of 600 mg brings a much quicker response than 400 mg, > waiting the extra time to start Gleevec will make up for the extra delay in > starting Gleevec. > > In the early days many of us waited 3 months and more before we were able to > start Gleevec. I waited 14 months before starting Gleevec. > > If this is a big concern for you, I would contact Dr. directly and > ask him the question. > > Zavie > > Zavie (age 69) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > 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 > 3.2 log reduction Jun/07 > 3.6 log reduction Sep/07 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > _____ > > From: [mailto: ] On Behalf Of > Karljohn75 > Sent: October 11, 2007 1:12 AM > > Subject: [ ] Need your advice > > Hello everyone, > > I need your opinion if I should still join the clinical trial. This > trial will allow me to start on Glivec at 600mg daily and to be > swtiched on to Nilotinib if I am not respoding well to Glivec. It has > been postponed 3 times already. I was told that it will start on > October 22 but now it was moved to November 8, 2007. I was diagnosed > with CML August 26, 2007 and has been taking Hydrea since. My WCC is > now back to normal. > > I was given an option to wait until November 8 or I can start with > Glivec 400 mg daily next week. > > I need your thoughts regarding this matter guys... > > Take care and God speed. > > Ray > Age: 32 years old > Dx: August 27, 2007 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 Hi Ray, I was intrigued why you have to wait for the trial to start on Glivec? I have started at 400mg and my haem/t said he didn’t think I needed Hydrea. My WCC are still high (not sure what as he is away at present), but my weekly bloods show everything else is fine! On dx my WCC were 21.4. After experiencing the side effects of Glivec on 400mg, I don’t think I personally would want to start on 600mg – but that’s me and everyone seems to react a little differently. If my side effects hadn’t started to settle a bit, I think I would have gone for the every 2nd day option I was offered. At least the working week is over and it was a struggle at times, but I got through the full week, even with some take home work and I wake up every morning!!!!:-) Regards, Dx 27/7/07 Glivec 400mg daily _____ From: [mailto: ] On Behalf Of Karljohn75 Sent: Thursday, 11 October 2007 3:12 PM Subject: [ ] Need your advice Hello everyone, I need your opinion if I should still join the clinical trial. This trial will allow me to start on Glivec at 600mg daily and to be swtiched on to Nilotinib if I am not respoding well to Glivec. It has been postponed 3 times already. I was told that it will start on October 22 but now it was moved to November 8, 2007. I was diagnosed with CML August 26, 2007 and has been taking Hydrea since. My WCC is now back to normal. I was given an option to wait until November 8 or I can start with Glivec 400 mg daily next week. I need your thoughts regarding this matter guys... Take care and God speed. Ray Age: 32 years old Dx: August 27, 2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 PS Ray – in Australia under medicare, if we don’t respond to Glivec within 18 months or the side effects are too severe, we already have the choice to be able to swap to Nilotinib at the same cost of Glivec ~ $30.70 if you don’t have a health care card. Regards, _____ From: [mailto: ] On Behalf Of Karljohn75 Sent: Thursday, 11 October 2007 3:12 PM Subject: [ ] Need your advice Hello everyone, I need your opinion if I should still join the clinical trial. This trial will allow me to start on Glivec at 600mg daily and to be swtiched on to Nilotinib if I am not respoding well to Glivec. It has been postponed 3 times already. I was told that it will start on October 22 but now it was moved to November 8, 2007. I was diagnosed with CML August 26, 2007 and has been taking Hydrea since. My WCC is now back to normal. I was given an option to wait until November 8 or I can start with Glivec 400 mg daily next week. I need your thoughts regarding this matter guys... Take care and God speed. Ray Age: 32 years old Dx: August 27, 2007 Quote Link to comment Share on other sites More sharing options...
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