Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 How about you Marcos - great job! --- On Fri, 1/29/10, Marcos Perreau Guimaraes <montereyunderwater@...> wrote: From: Marcos Perreau Guimaraes <montereyunderwater@...> Subject: [ ] pcru " " < > Date: Friday, January 29, 2010, 1:42 AM Â Hi all, I hope everybody is doing good today. I just got my last pcr result in the mail and it's negative. This last year I had 3 negative and one positive but too low to quantify. Cheers, Marcos. -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 408 219 9622 (cell) marcospgstanford (DOT) edu montereyunderwater@ gmail.com www.stanford. edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 That's wonderful, Marcos! JoAnn --- In , Marcos Perreau Guimaraes <montereyunderwater@...> wrote: > > Hi all, > I hope everybody is doing good today. I just got my last pcr result in the > mail and it's negative. This last year I had 3 negative and one positive but > too low to quantify. > Cheers, > Marcos. > > -- > Marcos Perreau Guimaraes > Suppes Brain Lab > Ventura Hall - CSLI > Stanford University > 220 Panama street > Stanford CA 94305-4101 > 650 614 2305 > 408 219 9622 (cell) > marcospg@... > montereyunderwater@... > www.stanford.edu/~marcospg/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 Congratulations Marcos T Sent from my Verizon Wireless BlackBerry [ ] pcru " " < > Date: Friday, January 29, 2010, 1:42 AM Â Hi all, I hope everybody is doing good today. I just got my last pcr result in the mail and it's negative. This last year I had 3 negative and one positive but too low to quantify. Cheers, Marcos. -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 408 219 9622 (cell) marcospgstanford (DOT) edu montereyunderwater@ gmail.com www.stanford. edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 Congratulations Marcos . Its a great feeling to get to this point. --- On Fri, 1/29/10, Marcos Perreau Guimaraes <montereyunderwater@...> wrote: From: Marcos Perreau Guimaraes <montereyunderwater@...> Subject: [ ] pcru " " < > Date: Friday, January 29, 2010, 1:42 AM  Hi all, I hope everybody is doing good today. I just got my last pcr result in the mail and it's negative. This last year I had 3 negative and one positive but too low to quantify. Cheers, Marcos. -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 408 219 9622 (cell) marcospgstanford (DOT) edu montereyunderwater@ gmail.com www.stanford. edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2010 Report Share Posted January 29, 2010 Thats awesome news Marcos, I just got my results yesturday first postivie in 6 1/2 years, but they said it was low, and nothing to be worried about, and that is what I am trying to do. --- On Thu, 1/28/10, Marcos Perreau Guimaraes <montereyunderwater@...> wrote: From: Marcos Perreau Guimaraes <montereyunderwater@...> Subject: [ ] pcru " " < > Date: Thursday, January 28, 2010, 10:42 PM Â Hi all, I hope everybody is doing good today. I just got my last pcr result in the mail and it's negative. This last year I had 3 negative and one positive but too low to quantify. Cheers, Marcos. -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 408 219 9622 (cell) marcospgstanford (DOT) edu montereyunderwater@ gmail.com www.stanford. edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Hi Sharon, At Stanford Hospital. I have Kaiser but they send the sample to Stanford for the PCR test. Marcos On Thu, Jan 28, 2010 at 10:56 PM, Sharon Teichera <onthewtr@...>wrote: > > > Hi Marcus, > > Where is your test done? > > Sharon > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of Marcos > Perreau Guimaraes > Sent: Thursday, January 28, 2010 10:43 PM > > Subject: [ ] pcru > > > Hi all, > I hope everybody is doing good today. I just got my last pcr result in the > mail and it's negative. This last year I had 3 negative and one positive > but > too low to quantify. > Cheers, > Marcos. > > -- > Marcos Perreau Guimaraes > Suppes Brain Lab > Ventura Hall - CSLI > Stanford University > 220 Panama street > Stanford CA 94305-4101 > 650 614 2305 > 408 219 9622 (cell) > marcospgstanford (DOT) <mailto:marcospg%40stanford.edu<marcospg%2540stanford.edu>> > edu > montereyunderwater@ <mailto:montereyunderwater%40gmail.com<montereyunderwater%2540gmail.com>> > gmail.com > www.stanford.edu/~marcospg/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Mine used to go to Quest now they do their own. Thanks for the info. Sharon [ ] pcru > > > Hi all, > I hope everybody is doing good today. I just got my last pcr result in the > mail and it's negative. This last year I had 3 negative and one positive > but > too low to quantify. > Cheers, > Marcos. > > -- > Marcos Perreau Guimaraes > Suppes Brain Lab > Ventura Hall - CSLI > Stanford University > 220 Panama street > Stanford CA 94305-4101 > 650 614 2305 > 408 219 9622 (cell) > marcospgstanford (DOT) <mailto:marcospg%40stanford.edu<marcospg%2540stanford.edu>> > edu > montereyunderwater@ <mailto:montereyunderwater%40gmail.com<montereyunderwater%2540gmail.com>> > gmail.com > www.stanford.edu/~marcospg/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Aw, Marcos, that is GREAT. Things are sure looking up for you all the way around! : - ) On Thu, Jan 28, 2010 at 10:42 PM, Marcos Perreau Guimaraes < montereyunderwater@...> wrote: > > > Hi all, > I hope everybody is doing good today. I just got my last pcr result in the > mail and it's negative. This last year I had 3 negative and one positive > but > too low to quantify. > Cheers, > Marcos. > > -- > Marcos Perreau Guimaraes > Suppes Brain Lab > Ventura Hall - CSLI > Stanford University > 220 Panama street > Stanford CA 94305-4101 > 650 614 2305 > 408 219 9622 (cell) > marcospg@... <marcospg%40stanford.edu> > montereyunderwater@... <montereyunderwater%40gmail.com> > www.stanford.edu/~marcospg/ <http://www.stanford.edu/%7Emarcospg/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Dear Zavie, Tracie, Lottie and all of the long timers!!! As you guys know i was DX May 07 with blood count of 539,000 (so a rougher start than some) chemo, leukophresis, Neutropenic etc etc. I am always a little disheartened when I read posts of people who were DX long after me and quite quickly reach PCRU, I know Zavie has called me a turtle before 9my PCR is 000.03 and is going down very slowly! I am still on 400mg Gleevec daily and tolerating it fairly well. I know the newest idea is to remain CCR and not necessarily reach PCRU but I still think I am maybe doing something wrong?? Any input appreciated Donna x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Donna,it took me 9 years to reach CCR and 14 years to reach PCR .035. Hang in there, and don't compare to what others are, everyone is so different. Good luck. a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 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. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club From: donnaberry99 <no_reply > Subject: [ ] PCRU Date: Tuesday, February 2, 2010, 11:50 AM  Dear Zavie, Tracie, Lottie and all of the long timers!!! As you guys know i was DX May 07 with blood count of 539,000 (so a rougher start than some) chemo, leukophresis, Neutropenic etc etc. I am always a little disheartened when I read posts of people who were DX long after me and quite quickly reach PCRU, I know Zavie has called me a turtle before 9my PCR is 000.03 and is going down very slowly! I am still on 400mg Gleevec daily and tolerating it fairly well. I know the newest idea is to remain CCR and not necessarily reach PCRU but I still think I am maybe doing something wrong?? Any input appreciated Donna x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Bobby, Just curious, were you constantly going down the whole time or did your numbers go up and down? > > From: donnaberry99 <no_reply > > Subject: [ ] PCRU > > Date: Tuesday, February 2, 2010, 11:50 AM > > > > > > > > Â > > > > > > > > > > Dear Zavie, Tracie, Lottie and all of the long timers!!! > > As you guys know i was DX May 07 with blood count of 539,000 (so a rougher start than some) chemo, leukophresis, Neutropenic etc etc. I am always a little disheartened when I read posts of people who were DX long after me and quite quickly reach PCRU, I know Zavie has called me a turtle before 9my PCR is 000.03 and is going down very slowly! I am still on 400mg Gleevec daily and tolerating it fairly well. I know the newest idea is to remain CCR and not necessarily reach PCRU but I still think I am maybe doing something wrong?? > > Any input appreciated > > Donna x > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Wow! that's a bit tough to answer, as I have to go back the last 10 years. I was in the Gleevec trial for 1 1/2 years, the numbers went down, but never to CCR. Then we tried the next two trials with combinations of Gleevec, and as I recall, as they did not work, the numbers either stayed the same or increased, or they would have kept me on one of them. It was not until I entered the Sprycel trial at MDACC in July of 2004 that they went down and stayed down. Since they, they have not gone up all that much or down. I stay pretty even, there was a slight change in the last PCR tests, from .017 to .03 something. I will get another BMB/BMA this month, that will tell us a bit more about how well Ariad is working. But since being on Sprycel to now, with the exception of the previous trial, XL228, I have felt wonderful, no side effects . I am anemic and have had several transfusions, but that is my only problem. I quit sprycel because of pleural effusion, so far with Ariad I do not have that problem. If my pcr stays close to the last two, I will be a happy camper! I think there may be some people that get upset if their pcr goes up a bit and fear they are going backward instead of forward, but as you mentioned, if you reach ccr, or even if you don't and you're still in chr, that is not a bad place to be. I don't sweat it, I got into the Gleevec trial by a stroke of good luck, I saw Dr. Druker on TV talking about his miracle drug, and had my doc. write him a letter and I got in the trial in the nick of time, it was about to close. that was 10 years ago this month, and I was on my way " out " . So I have had 10 extra years of pretty good living, and if I never make PCRU I really don't give a hoot. I was dx when I was 65, and never thought I'd see 80, well, I'm still here! Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 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. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club From: Carol <tcepugh@...> Subject: Re: [ ] PCRU Date: Wednesday, February 3, 2010, 9:29 AM  Bobby, Just curious, were you constantly going down the whole time or did your numbers go up and down? > > From: donnaberry99 <no_reply@group s.com> > Subject: [ ] PCRU > groups (DOT) com > Date: Tuesday, February 2, 2010, 11:50 AM > > > > > > > >  > > > > > > > > > > Dear Zavie, Tracie, Lottie and all of the long timers!!! > > As you guys know i was DX May 07 with blood count of 539,000 (so a rougher start than some) chemo, leukophresis, Neutropenic etc etc. I am always a little disheartened when I read posts of people who were DX long after me and quite quickly reach PCRU, I know Zavie has called me a turtle before 9my PCR is 000.03 and is going down very slowly! I am still on 400mg Gleevec daily and tolerating it fairly well. I know the newest idea is to remain CCR and not necessarily reach PCRU but I still think I am maybe doing something wrong?? > > Any input appreciated > > Donna x > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Hi Donna, My response went from fast in the first few month to slow with a plateau for 2 years and then down again to 3 log and then pcru now, all the time at 400mg/day of gleevec. As long as it doesn't go up patience is I think the trick of the game. I was dxed in march 2005. Hang in there, if you are in CCR you are doing good and it s time to push the leukemia thing to the back-burner. Cheers., Marcos. On Tue, Feb 2, 2010 at 8:50 AM, donnaberry99 <no_reply >wrote: > > > Dear Zavie, Tracie, Lottie and all of the long timers!!! > As you guys know i was DX May 07 with blood count of 539,000 (so a rougher > start than some) chemo, leukophresis, Neutropenic etc etc. I am always a > little disheartened when I read posts of people who were DX long after me > and quite quickly reach PCRU, I know Zavie has called me a turtle before 9my > PCR is 000.03 and is going down very slowly! I am still on 400mg Gleevec > daily and tolerating it fairly well. I know the newest idea is to remain CCR > and not necessarily reach PCRU but I still think I am maybe doing something > wrong?? > Any input appreciated > Donna x > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 408 219 9622 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Dear Carol, Bobby's about 80 years old, I don't think she's been 'going down' the whole time--but maybe I'm wrong. :-) Bob , Granger, Indiana > > Bobby, > > Just curious, were you constantly going down the whole time or did your numbers go up and down? > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Oops. You're gonna be in trouble! > > > > Bobby, > > > > Just curious, were you constantly going down the whole time or did your numbers go up and down? > > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Tsk tsk! Sent via BlackBerry by AT & T Re: [ ] PCRU Oops. You're gonna be in trouble! > > > > Bobby, > > > > Just curious, were you constantly going down the whole time or did your numbers go up and down? > > > >> > Quote Link to comment Share on other sites More sharing options...
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