Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Eva- Congrats on reaching zero PCRU. My question is WHY in the world would the doctor tell you to stop taking the medication. At this time, we are on the meds for life until the " cure " is found. Having a zero DOES NOT mean you no longer have Leukemia. You still have Leukemia cells in you. They just can't be detected with technology as of yet. You stop the drug, you will have your counts come back as well as risk building up a resistance to the disease/meds. Please talk to your doctor and if its not a CML specialist, you definitely need to get a second opinion. Stopping the drug would be a mistake in my opinion...... I wish the best for you and hope you continue to have PCRU's but continue the drugs. RN Wife and mother of 3 (14,11,9) CML 5/13/05 Gleevec 800mg until 8/07 Sprycel 100mg since In a message dated 1/25/2011 3:39:56 P.M. Central Standard Time, evaklish@... writes: 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 Congrats Eva ...from one to another. Eva Brown From: vegasrnjen@... Sent: Tuesday, January 25, 2011 9:28 PM Subject: Re: [ ] Zero! Eva Eva- Congrats on reaching zero PCRU. My question is WHY in the world would the doctor tell you to stop taking the medication. At this time, we are on the meds for life until the " cure " is found. Having a zero DOES NOT mean you no longer have Leukemia. You still have Leukemia cells in you. They just can't be detected with technology as of yet. You stop the drug, you will have your counts come back as well as risk building up a resistance to the disease/meds. Please talk to your doctor and if its not a CML specialist, you definitely need to get a second opinion. Stopping the drug would be a mistake in my opinion...... I wish the best for you and hope you continue to have PCRU's but continue the drugs. RN Wife and mother of 3 (14,11,9) CML 5/13/05 Gleevec 800mg until 8/07 Sprycel 100mg since In a message dated 1/25/2011 3:39:56 P.M. Central Standard Time, evaklish@... writes: 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 31, 2011 Report Share Posted January 31, 2011 Eva, congratulations on reaching zero, but under no circumstances should you consider stopping Gleevec. that is what got you there and that is what will keep you there,..... a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: vegasrnjen@... <vegasrnjen@...> Subject: Re: [ ] Zero! Eva Date: Tuesday, January 25, 2011, 9:28 PM  Eva- Congrats on reaching zero PCRU. My question is WHY in the world would the doctor tell you to stop taking the medication. At this time, we are on the meds for life until the " cure " is found. Having a zero DOES NOT mean you no longer have Leukemia. You still have Leukemia cells in you. They just can't be detected with technology as of yet. You stop the drug, you will have your counts come back as well as risk building up a resistance to the disease/meds. Please talk to your doctor and if its not a CML specialist, you definitely need to get a second opinion. Stopping the drug would be a mistake in my opinion...... I wish the best for you and hope you continue to have PCRU's but continue the drugs. RN Wife and mother of 3 (14,11,9) CML 5/13/05 Gleevec 800mg until 8/07 Sprycel 100mg since In a message dated 1/25/2011 3:39:56 P.M. Central Standard Time, evaklish@... writes: 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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