Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Beth can you tell me how long you were on Glivec before this happened? I had intervals of 3 to 4 weeks when I went from Glivec to Sprycel and then 3 weeks when I went off sprycel and on to Tasigna. I was fine. sharon _____ From: [mailto: ] On Behalf Of bethshay22 Sent: Tuesday, September 28, 2010 1:20 PM Subject: [ ] anyone been taken off tkis for a while? Three weeks ago when my blood levels suddenly dropped and the leukemia cells seemed to be increasing, I was taken off Glivec as it seemed to be not working/causing a problem. Since then I have had a BMB and have been referred to the Hammersmith Hospital in London. BUT I am still waiting for the results of DNA tests (I presume looking for resistance/mutations) and have not had any medication for 3 weeks. I am naturally concerned and wondered whether anyone 'out there' has had periods of no meds at all? It's difficult waiting! Keeping chin up ... Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 I was diagnosed July 2006 and stopped Gleevec (toxic issues) Sep 9, 2009. I am still off and my numbers are still normal. I'm trying an alternative infusion treatment (2 months now) while they are still normal to see if it will lower my numbers more or at least prevent the CML from advancing. I was diagnosed very early according to Oncologist and was in 0 detection within 6 months from starting Gleevec. I am so sensitive to all the meds that I decided to give this a try before looking at the advised treatment. My oncologist is aware of my decision and agreed to still monitor my blood levels also. Everyone is different and I'm sure react to different protocols, so I've decided to try this one. Will post later when something notable happens. > > Beth can you tell me how long you were on Glivec before this happened? > I had intervals of 3 to 4 weeks when I went from Glivec to Sprycel and then > 3 weeks when I went off sprycel and on to Tasigna. > I was fine. > sharon > > _____ > > From: [mailto: ] On Behalf Of > bethshay22 > Sent: Tuesday, September 28, 2010 1:20 PM > > Subject: [ ] anyone been taken off tkis for a while? > > > > > Three weeks ago when my blood levels suddenly dropped and the leukemia cells > seemed to be increasing, I was taken off Glivec as it seemed to be not > working/causing a problem. > Since then I have had a BMB and have been referred to the Hammersmith > Hospital in London. > BUT I am still waiting for the results of DNA tests (I presume looking for > resistance/mutations) and have not had any medication for 3 weeks. I am > naturally concerned and wondered whether anyone 'out there' has had periods > of no meds at all? > It's difficult waiting! > Keeping chin up ... > Beth > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 Hi Barbara, I have questions. What is the name of the infusion treatment that you are doing now? I'm assuming that you are at PCRU. How often are you being tested, and does it always come back undetectable? If you are worried about the CML coming back you might consider harvesting your cells. Zavie Zavie (age 72) 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 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 4.4 log reduction Apr/10 e-mail: <mailto:zmiller@...> zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem From: [mailto: ] On Behalf Of Barbara Sent: September-29-10 9:47 AM Subject: Re: [ ] anyone been taken off tkis for a while? I was diagnosed July 2006 and stopped Gleevec (toxic issues) Sep 9, 2009. I am still off and my numbers are still normal. I'm trying an alternative infusion treatment (2 months now) while they are still normal to see if it will lower my numbers more or at least prevent the CML from advancing. I was diagnosed very early according to Oncologist and was in 0 detection within 6 months from starting Gleevec. I am so sensitive to all the meds that I decided to give this a try before looking at the advised treatment. My oncologist is aware of my decision and agreed to still monitor my blood levels also. Everyone is different and I'm sure react to different protocols, so I've decided to try this one. Will post later when something notable happens. > > Beth can you tell me how long you were on Glivec before this happened? > I had intervals of 3 to 4 weeks when I went from Glivec to Sprycel and then > 3 weeks when I went off sprycel and on to Tasigna. > I was fine. > sharon > > _____ > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of > bethshay22 > Sent: Tuesday, September 28, 2010 1:20 PM > <mailto:%40> > Subject: [ ] anyone been taken off tkis for a while? > > > > > Three weeks ago when my blood levels suddenly dropped and the leukemia cells > seemed to be increasing, I was taken off Glivec as it seemed to be not > working/causing a problem. > Since then I have had a BMB and have been referred to the Hammersmith > Hospital in London. > BUT I am still waiting for the results of DNA tests (I presume looking for > resistance/mutations) and have not had any medication for 3 weeks. I am > naturally concerned and wondered whether anyone 'out there' has had periods > of no meds at all? > It's difficult waiting! > Keeping chin up ... > Beth > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2010 Report Share Posted September 29, 2010 > > Three weeks ago when my blood levels suddenly dropped and the leukemia cells seemed to be increasing, I was taken off Glivec as it seemed to be not working/causing a problem. > Since then I have had a BMB and have been referred to the Hammersmith Hospital in London. > BUT I am still waiting for the results of DNA tests (I presume looking for resistance/mutations) and have not had any medication for 3 weeks. I am naturally concerned and wondered whether anyone 'out there' has had periods of no meds at all? > It's difficult waiting! > Keeping chin up ... > Beth _____________________________________ Hi Beth, I was wondering how your visit to the Hammersmith went? I hope they are able to figure out the best plan for you, they are a top notch cml center. First, do you know for sure that they want you still off meds? sometimes this is worth checking, because there can be some mis-communication, so I would just varify this with them. I have been off meds for periods of time....and I think it depends on how active your cml cells are. When I was off meds, usually for 2 weeks at a time (because of pleural effusion of Sprycel), my pcr did go up......for other people it can be a much slower increase. Dr. Druker was not real concerned (but he always checked for mutations when I had an increase) because he knew that when I was back on a TKI the pcr would go back down again. I hope you will get all your questions answered soon. C. Quote Link to comment Share on other sites More sharing options...
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