Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Hi Eva: I do not understand why your Oncologist would say you could stop your Gleevec because you got a zero reading on your PCR. Being PCRU is not a cure, and those cancer cells can come back at anytime. I am only going by what my Oncologist who has been a specialist in CML for many years told me. I just had my latest pcr test and I have been PCRU for 7 yearswith this latest result. I continue to take my Gleevec 400mg. daily, and I do have side effects too. Personally, I would not take the chance of stopping my medication.     I was diagnosed in 1998, and feel very blessed to still be here. This is just my opinion, but see what others say. So glad your doing so good after only 2 years. A. From: Eva <evaklish@...> Subject: [ ] Zero! Date: Tuesday, January 25, 2011, 4:39 PM  Hello everybody! I've got 0% result on my last PCR test. After 2 years on Gleevec) I wonder what would be the next step. My doctor said that after a year of full remission I could stop taking Gleevec and see what could happen. I don't have much problems on Gleevec. I've made ultrasound of abdominal organs. The liver and spleen are ok. But there's cholecystitis and pyelonephritis. I'm not sure that these were caused by Gleevec and going to deal with this. Has anybody faced with such problem on Gleevec? Thank you to everybody for kind support and tenderness) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Yes, my doctor says the same thing. Meds for life. It's great you got to zero so quickly though Eva! On Tue, Jan 25, 2011 at 1:39 PM, Eva <evaklish@...> wrote: > > > Hello everybody! > I've got 0% result on my last PCR test. After 2 years on Gleevec) > I wonder what would be the next step. > My doctor said that after a year of full remission I could stop taking > Gleevec and see what could happen. > I don't have much problems on Gleevec. > I've made ultrasound of abdominal organs. The liver and spleen are ok. But > there's cholecystitis and pyelonephritis. I'm not sure that these were > caused by Gleevec and going to deal with this. Has anybody faced with such > problem on Gleevec? > > Thank you to everybody for kind support and tenderness) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Eva,  CONGRATULATIONS!!!!!!!!  ~Karine~ ________________________________ From: Eva <evaklish@...> Sent: Tue, January 25, 2011 1:39:53 PM Subject: [ ] Zero!  Hello everybody! I've got 0% result on my last PCR test. After 2 years on Gleevec) I wonder what would be the next step. My doctor said that after a year of full remission I could stop taking Gleevec and see what could happen. I don't have much problems on Gleevec. I've made ultrasound of abdominal organs. The liver and spleen are ok. But there's cholecystitis and pyelonephritis. I'm not sure that these were caused by Gleevec and going to deal with this. Has anybody faced with such problem on Gleevec? Thank you to everybody for kind support and tenderness) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Hi Eva - congratulations, it is a nice place to be! However, you definitely cannot stop taking your Glivec! Most of the ones who have, were treated with Interferon, so they had been diagnosed back in the 90's. Our disease never goes away. I have been PCRU for 2 years and no way would I stop my meds! Cheers From: Eva <evaklish@...> Cc: Sent: Wednesday, 26 January 2011 8:39 AM Subject: [ ] Zero!  Hello everybody! I've got 0% result on my last PCR test. After 2 years on Gleevec) I wonder what would be the next step. My doctor said that after a year of full remission I could stop taking Gleevec and see what could happen. I don't have much problems on Gleevec. I've made ultrasound of abdominal organs. The liver and spleen are ok. But there's cholecystitis and pyelonephritis. I'm not sure that these were caused by Gleevec and going to deal with this. Has anybody faced with such problem on Gleevec? Thank you to everybody for kind support and tenderness) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Congratulations on a fast response to Gleevec. There are new studies out there that your ONC is looking at to be able to tell you that after a year of 0 counts you could stop taking gleevec. Just be sure that you keep a regular check. The Gleevec caused me to have Iron Defecient Anemia so in order not to have transfusions every three weeks my ONC and I decided to atempt the no Gleevec treatment. It has been 2 years now and I go back next month for another set of tests. Yes there has been a slight increase in my counts but we are watching closely and have set .1000 when I restart treatment. You believe can't become resist to a drug when you are not taking it. And since I started on Gleevec I have several choices of drugs when(not if) I resume. I had most of the Gleevec side effects and all those have disappeared and the quality of life is unbelievable. No fatigue or brain fog. We all have to make our decisions based on what we are comfortable with. Fear is a huge factor but also being part of a group of people pioneering new paths with CML can be exciting also. Good luck with your decisions. H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .7 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Pressent QT-PCR .03 4/09 QT-PCR .015 6/09 QT-PCR .021 9/09 QT-PCR .028 1/10 QT-PCR .01+ 4/10 QT-PCR .0468 10/10 > > Hello everybody! > I've got 0% result on my last PCR test. After 2 years on Gleevec) > I wonder what would be the next step. > My doctor said that after a year of full remission I could stop taking Gleevec and see what could happen. > I don't have much problems on Gleevec. > I've made ultrasound of abdominal organs. The liver and spleen are ok. But there's cholecystitis and pyelonephritis. I'm not sure that these were caused by Gleevec and going to deal with this. Has anybody faced with such problem on Gleevec? > > Thank you to everybody for kind support and tenderness) > Quote Link to comment Share on other sites More sharing options...
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