Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 O!!! YIPPEEE!!! Number 1092 in the Zero Club Zavie Esther, could you please write me at e-mail: zmillersympatico (DOT) I have some personal questions for you. 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of snipandtip Sent: August 27, 2007 10:18 PM Subject: [ ] Please explain new pcr Hi everyone haven't posted in a while just got my new pcr results my onc says i'm doing well but never tells me if i'm in a remission or a 2 or 3 log reduction. Please explain what i'm in. I was dx. in Oct. o6 4oo mg. gleevec. b2a2 transcript <0.001% b3a2 transcript 0.097 ela2 transcript <0.oo1% I've only had 1 bmb since being dx. My onc says i don't need one anymore He says i just need to have my blood work done every 6 weeks and my pcr every 3 months. Does everyone agree with this? I'm not sure if i like this Dr. or not he's very cold and somtimes sarcastic. Does anyone know of a cml specialist at the University of land . I go to him because it's convenient and if i'm doing well why bother changing i only have to see him every 3 months. what do you think? Thanks for listning Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 > I've only had 1 bmb since being dx. My onc says i don't need one > anymore He says i just need to have my blood work done every 6 weeks > and my pcr every 3 months. Does everyone agree with this? I'm not sure > if i like this Dr. or not he's very cold and somtimes sarcastic. Does > anyone know of a cml specialist at the University of land . I go > to him because it's convenient and if i'm doing well why bother > changing i only have to see him every 3 months. what do you think? > Thanks for listning > Esther > Esther: I would have to say your doing great. Your PCR results would almost certainly likely equate to a Complete Cytogenetic Response if tested on the marrow (which is why Zavie put you into the Zero club). For less than 12 months of therapy, it seems your are doing great. The 3 log remission (Major Molecular Response) is interpreted as a 3 log drof from the average baseline of the testing lab. You can ask what the lab's average diagnosis baseline PCR value to calculate. From most labs I know, you are close if not having already made a 3 log redudction. Anyway, what you doctor is recommending on the blood cell counts and PCR is exactly what the CML experts recommend. The value of a continued BMB in someone who is normal in the marrow is a matter of debate. Some docs believe that once a year (or every other year) screening is necessary to check for abnormalities. Some docs counter that the PCR can pick up a CML relapse before the marrow will and even if abnormalities are seen in the Ph-negative cells, the experience shows so far its best to stay on therapy and these abnormalities will quite likely fade away all by itself. This then begs the question of why doing them in the first place. No " Right answer " as this time. If you would like to check with a physician at Univ. of land who see most of the CML patients, they are Dr. Rapoport and Dr. Ivan Gojo. I believe that one of the people who frequents this board is seen by Dr. Rapoport and speaks highly of him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 > If you would like to check with a physician at Univ. of land who > see most of the CML patients, they are Dr. Rapoport and Dr. Ivan > Gojo. I believe that one of the people who frequents this board is > seen by Dr. Rapoport and speaks highly of him. > Typo, that should read Dr. Ivana Gojo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2007 Report Share Posted August 28, 2007 hi thanks for all this info it really made me feel more at ease with this doctor. Everyone is always saying their getting bmb and i had only 1. now your explaination on this makes sense. Zavie i'm so glad to be in your zero club thanks to all in this group to me you're more imformative than the docs Thanks again Esther In @... <mailto:@...> m, " " <timothyfarley16@...> wrote: > > > > I've only had 1 bmb since being dx. My onc says i don't need one > > anymore He says i just need to have my blood work done every 6 weeks > > and my pcr every 3 months. Does everyone agree with this? I'm not > sure > > if i like this Dr. or not he's very cold and somtimes sarcastic. Does > > anyone know of a cml specialist at the University of land . I go > > to him because it's convenient and if i'm doing well why bother > > changing i only have to see him every 3 months. what do you think? > > Thanks for listning > > Esther > > > > Esther: > > I would have to say your doing great. Your PCR results would almost > certainly likely equate to a Complete Cytogenetic Response if tested on > the marrow (which is why Zavie put you into the Zero club). For less > than 12 months of therapy, it seems your are doing great. The 3 log > remission (Major Molecular Response) is interpreted as a 3 log drof > from the average baseline of the testing lab. You can ask what the > lab's average diagnosis baseline PCR value to calculate. From most > labs I know, you are close if not having already made a 3 log > redudction. Anyway, what you doctor is recommending on the blood cell > counts and PCR is exactly what the CML experts recommend. > > The value of a continued BMB in someone who is normal in the marrow is > a matter of debate. Some docs believe that once a year (or every other > year) screening is necessary to check for abnormalities. Some docs > counter that the PCR can pick up a CML relapse before the marrow will > and even if abnormalities are seen in the Ph-negative cells, the > experience shows so far its best to stay on therapy and these > abnormalities will quite likely fade away all by itself. This then > begs the question of why doing them in the first place. No " Right > answer " as this time. > > If you would like to check with a physician at Univ. of land who > see most of the CML patients, they are Dr. Rapoport and Dr. Ivan > Gojo. I believe that one of the people who frequents this board is > seen by Dr. Rapoport and speaks highly of him. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 Hi it is confusion,values in US.and abroad are not the same,however your reports are great.Just have blood test every 3 months when your pills are due. [ ] Please explain new pcr Hi everyone haven't posted in a while just got my new pcr results my onc says i'm doing well but never tells me if i'm in a remission or a 2 or 3 log reduction. Please explain what i'm in. I was dx. in Oct. o6 4oo mg. gleevec. b2a2 transcript <0.001% b3a2 transcript 0.097 ela2 transcript <0.oo1% I've only had 1 bmb since being dx. My onc says i don't need one anymore He says i just need to have my blood work done every 6 weeks and my pcr every 3 months. Does everyone agree with this? I'm not sure if i like this Dr. or not he's very cold and somtimes sarcastic. Does anyone know of a cml specialist at the University of land . I go to him because it's convenient and if i'm doing well why bother changing i only have to see him every 3 months. what do you think? Thanks for listning Esther ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. http://get.games./proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2007 Report Share Posted August 29, 2007 thank you it feels good to know all of you care. thanks, Esther > > Hi it is confusion,values in US.and abroad are not the same,however your reports are great.Just have blood test every 3 months when your pills are due. > > > [ ] Please explain new pcr > > > Hi everyone haven't posted in a while just got my new pcr results > my onc says i'm doing well but never tells me if i'm in a remission or > a 2 or 3 log reduction. Please explain what i'm in. I was dx. in Oct. > o6 4oo mg. gleevec. > b2a2 transcript <0.001% > b3a2 transcript 0.097 > ela2 transcript <0.oo1% > I've only had 1 bmb since being dx. My onc says i don't need one > anymore He says i just need to have my blood work done every 6 weeks > and my pcr every 3 months. Does everyone agree with this? I'm not sure > if i like this Dr. or not he's very cold and somtimes sarcastic. Does > anyone know of a cml specialist at the University of land . I go > to him because it's convenient and if i'm doing well why bother > changing i only have to see him every 3 months. what do you think? > Thanks for listning > Esther > > > > > > > ________________________________________________________________________\ ____________ > Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. > http://get.games./proddesc?gamekey=monopolyherenow > > Quote Link to comment Share on other sites More sharing options...
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