Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Way to go! From: Basil s <basil.jacobs@...> Subject: [ ] My good news Date: Sunday, February 8, 2009, 9:09 AM Hi to all you wonderful folks out there. After I had my Gallbladder removed in December 2008, I found symptoms that I was associating with Gleevec was in fact side effects of my Gallstones. Last month I had my tests done for my quartely review and all is still well here. RT/Q-PCR: BCR/ABL undetectable Liver function: Normal FBC: Normal ( White cell count down, but acceptable) This is now my fourth year in " remission " I was Dx'ed five and a half years ago. Kind regards Basil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Congratulations... What wonderful news to start the day with. I am going on my second yr of diagnosis and am finding life more and more postive with bumps in the road here and there of course. But at least are just bumps and not mountains. Life is great... Anita ________________________________ From: Basil s <basil.jacobs@...> Sent: Sunday, February 8, 2009 8:09:35 AM Subject: [ ] My good news Hi to all you wonderful folks out there. After I had my Gallbladder removed in December 2008, I found symptoms that I was associating with Gleevec was in fact side effects of my Gallstones. Last month I had my tests done for my quartely review and all is still well here. RT/Q-PCR: BCR/ABL undetectable Liver function: Normal FBC: Normal ( White cell count down, but acceptable) This is now my fourth year in " remission " I was Dx'ed five and a half years ago. Kind regards Basil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Hi Basil, Great news. We are always too quick to blame Gleevec for our health problems. Zavie Zavie (age 70) 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 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Basil s Sent: February-08-09 9:10 AM Subject: [ ] My good news Hi to all you wonderful folks out there. After I had my Gallbladder removed in December 2008, I found symptoms that I was associating with Gleevec was in fact side effects of my Gallstones. Last month I had my tests done for my quartely review and all is still well here. RT/Q-PCR: BCR/ABL undetectable Liver function: Normal FBC: Normal ( White cell count down, but acceptable) This is now my fourth year in " remission " I was Dx'ed five and a half years ago. Kind regards Basil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 > > Congratulations... What wonderful news to start the day with. > I am going on my second yr of diagnosis and am finding life more and more postive with bumps in the road here and there of course. > But at least are just bumps and not mountains. > Life is great... > Anita > > Hi Anita, Just hang in there and enjoy life to the fullest extent. CML is not an issue in my life anymore. What is of greater importance is a positive attitude. Yes there will be bumps in the road ahead, but I leave that in the hands of my Lord. Best wishes Basil > > > > ________________________________ > From: Basil s <basil.jacobs@...> > > Sent: Sunday, February 8, 2009 8:09:35 AM > Subject: [ ] My good news > > > Hi to all you wonderful folks out there. > After I had my Gallbladder removed in December 2008, I found symptoms > that I was associating with Gleevec was in fact side effects of my > Gallstones. > Last month I had my tests done for my quartely review and all is still > well here. > RT/Q-PCR: BCR/ABL undetectable > Liver function: Normal > FBC: Normal ( White cell count down, but acceptable) > > This is now my fourth year in " remission " > I was Dx'ed five and a half years ago. > Kind regards > Basil > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 > > Hi Basil, > > Great news. We are always too quick to blame Gleevec for our health > problems. > > Zavie > > > Zavie (age 70) > 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 > e-mail: zmiller@... > Tel: 613-726-1117 > Tel: 561-429-3309 in Florida > Fax: 309-296-0807 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > Hi Zavie, Great to hear from you! I must get my Skype going again and make contact. Kind regards, Basil > > _____ > > From: [mailto: ] On Behalf Of Basil > s > Sent: February-08-09 9:10 AM > > Subject: [ ] My good news > > > > Hi to all you wonderful folks out there. > After I had my Gallbladder removed in December 2008, I found symptoms > that I was associating with Gleevec was in fact side effects of my > Gallstones. > Last month I had my tests done for my quartely review and all is still > well here. > RT/Q-PCR: BCR/ABL undetectable > Liver function: Normal > FBC: Normal ( White cell count down, but acceptable) > > This is now my fourth year in " remission " > I was Dx'ed five and a half years ago. > Kind regards > Basil > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 Hi Basil - a big CONGRATS that is so good to hear. Regards, from Down Under From: [mailto: ] On Behalf Of Basil s Sent: Monday, 9 February 2009 1:10 AM Subject: [ ] My good news Hi to all you wonderful folks out there. After I had my Gallbladder removed in December 2008, I found symptoms that I was associating with Gleevec was in fact side effects of my Gallstones. Last month I had my tests done for my quartely review and all is still well here. RT/Q-PCR: BCR/ABL undetectable Liver function: Normal FBC: Normal ( White cell count down, but acceptable) This is now my fourth year in " remission " I was Dx'ed five and a half years ago. Kind regards Basil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 -- thanks it's like a Dr. can make you or break you i just had enough of his sarcasim,it was that he was so convenient. Esther - In , Shipley <paulorkay@...> wrote: > > Sounds like we had the same mindsent for a doc. I was told the same I reached pcru later than 18 months so what I am on 600Gleevec. > We lived in wine 32 years then retired to TN.Glad things are good. > > > > > ________________________________ > From: > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 I have to drive 40 miles now,rather than in town,but I'm happy.I was able to get ahead about 10 months on my Gleevec,this gives me some travel time and can stay away from the onc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 - wow that's a long drive my first onc was 10 min. from my house and the new one takes 40 min. but i'm glad to drive it.. Esther -- In , Shipley <paulorkay@...> wrote: > > I have to drive 40 miles now,rather than in town,but I'm happy.I was able to get ahead about 10 months on my Gleevec,this gives me some travel time and can stay away from the onc. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 One of my doctors told me I would not make it past last April because I was in the blast stage when Dx'd. I made it past April and in July was in remission. Unfortunately I cannot change dr's they come and go every 6 months. I owe all my information i have received from you guys. This Group is an awesome family. Thank You everyone Anita ________________________________ From: suzzienovember <suzzienovember@...> Sent: Wednesday, August 19, 2009 9:40:46 PM Subject: [ ] Re: my good news > Congratulations on your PCRU. We are hearing about it more and more everyday. Everyone just has to keep the faith. Suzzie > Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. > Esther > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 I COULD BE WRONG, BUT THINK NOT, IT TOOK GLEEVEC ONLY 2 1/2 YRS TO GET FDA APPROVAL. THAT WAS MIRACULOUS , PHENOMENAL, AND MAY NEVER HAPPEN AGAIN. I THINK IT WAS APPROVED IN MAY OF 2001, NOT SURE, SOMEONE WILL PIPE UP AND TELL US. BUT THAT WAS UNUSUAL, I THINK. I DON'T KNOW ABOUT SPRYCEL, DON'T REMEMBER, OR TASIGNA. BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz From: snipandtip <no_reply@grou p s.com> Subject: [ ] my good news groups (DOT) com Date: Wednesday, August 19, 2009, 9:15 PM Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 - i am so happy for you Anita, keep up the good work Esther -- In , anita <awristen1@...> wrote: > > One of my doctors told me I would not make it past last April because I was in the blast stage when Dx'd. > I made it past April and in July was in remission. Unfortunately I cannot change dr's they come and go every 6 months. > I owe all my information i have received from you guys. > This Group is an awesome family. > Thank You everyone > Anita > > > > > ________________________________ > From: suzzienovember <suzzienovember@...> > > Sent: Wednesday, August 19, 2009 9:40:46 PM > Subject: [ ] Re: my good news > > > > > > Congratulations on your PCRU. We are hearing about it more and more everyday. Everyone just has to keep the faith. > Suzzie > > > Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. > > Esther > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 That is awesome news Esther so Happy for you. Never ever give up Anita ________________________________ From: snipandtip <no_reply > Sent: Wednesday, August 19, 2009 8:15:18 PM Subject: [ ] my good news Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2009 Report Share Posted August 20, 2009 Hi Esther - congratulations and welcome to the PCRU club! Regards, From: [mailto: ] On Behalf Of snipandtip Sent: Thursday, 20 August 2009 11:15 AM Subject: [ ] my good news Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Anita - that truly is an amazing story! Are you on Glivec that put you into remission so quickly? Regards, From: [mailto: ] On Behalf Of anita Sent: Thursday, 20 August 2009 1:17 PM Subject: Re: [ ] Re: my good news One of my doctors told me I would not make it past last April because I was in the blast stage when Dx'd. I made it past April and in July was in remission. Unfortunately I cannot change dr's they come and go every 6 months. I owe all my information i have received from you guys. This Group is an awesome family. Thank You everyone Anita ________________________________ From: suzzienovember <suzzienovember@... <mailto:suzzienovember%40> > <mailto:%40> Sent: Wednesday, August 19, 2009 9:40:46 PM Subject: [ ] Re: my good news > Congratulations on your PCRU. We are hearing about it more and more everyday. Everyone just has to keep the faith. Suzzie > Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. > Esther > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 -- hi thank you and i wish this for everyone - In , " Malseed " <rodorbal@...> wrote: > > Hi Esther - congratulations and welcome to the PCRU club! > > > > Regards, > > > > > > > > > > From: [mailto: ] On Behalf Of > snipandtip > Sent: Thursday, 20 August 2009 11:15 AM > > Subject: [ ] my good news > > > > > > Hi everyone,I recently switched Drs because mine was a real jerk i always > felt depressed when i would leave his office. My new Dr. is Rappoport > at the University of land i got his name from someone in this group > awhile ago i think it was [thank you] it was the best thing i ever did > they made me feel so good the moment i stepped foot into the hospital.My > good news is that i am pcru i just found out today my number is .001 and pcr > says it's negative i am so excited because my old Dr. said that if you don't > reach pcru within 18 months you probably will never get there, it took me 2 > years and 10 months to reach it, so if it's taking you longer to reach pcru > don't give up you could still get there it doesn't matter how long it > takes.I could not have lived thru this cml without all of you so i thank you > so much for being there. > Esther > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 Hi all, For all CML patients, the following is a must read. Understanding CML: A Conversation with the Experts (Dr. Druker, Dr. Shah) http://www.cancereducation.com/cancersyspagesnb/a/lls/lls0803new/index.cfm?r id=116 Here is an excerpt that should interest everyone (including the doctor who is treating you) that thinks that reaching PCRU is important. In general, I've not been pushing people to get to this 3-log reduction. I'm perfectly happy when people are at a complete cytogenetic response, but it is individualized, and I'd be interested in your opinion, Dr. Shah, because I know there's a fair bit of variance on this question. Zavie PS All you need is CCR to get into the Zero Club. Zavie (age 71) 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Lomsdalen Sent: August 19, 2009 10:08 PM Subject: Re: [ ] my good news Esther that's so wonderful! Congratulations! Did you reach PCRU on Gleevec? I was diagnosed in May 2008, and had my Gleevec increased to 600mg. 4 weeks ago because my numbers started going up again. Never reached PCRU.. I get tested in 2 more weeks to see if the increase is helping or if I have to switch to Sprycel. I love hearing stories of others who in time, finally reach PCRU. I pray for that every day. Sincerely, ________________________________ From: snipandtip <no_reply@group <mailto:no_reply%40> s.com> groups (DOT) <mailto:%40> com Sent: Wednesday, August 19, 2009 6:15:18 PM Subject: [ ] my good news Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. Esther Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2009 Report Share Posted August 21, 2009 , I was only on Glivec for a week in April 2007 and changed to Sprycel Since May of 2007. Anita ________________________________ From: Malseed <rodorbal@...> Sent: Thursday, August 20, 2009 6:05:31 PM Subject: RE: [ ] Re: my good news Anita - that truly is an amazing story! Are you on Glivec that put you into remission so quickly? Regards, From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of anita Sent: Thursday, 20 August 2009 1:17 PM groups (DOT) com Subject: Re: [ ] Re: my good news One of my doctors told me I would not make it past last April because I was in the blast stage when Dx'd. I made it past April and in July was in remission. Unfortunately I cannot change dr's they come and go every 6 months. I owe all my information i have received from you guys. This Group is an awesome family. Thank You everyone Anita ____________ _________ _________ __ From: suzzienovember <suzzienovember <mailto:suzzienovem ber%40. com> > groups (DOT) com <mailto:% 40groups. com> Sent: Wednesday, August 19, 2009 9:40:46 PM Subject: [ ] Re: my good news > Congratulations on your PCRU. We are hearing about it more and more everyday. Everyone just has to keep the faith. Suzzie > Hi everyone,I recently switched Drs because mine was a real jerk i always felt depressed when i would leave his office. My new Dr. is Rappoport at the University of land i got his name from someone in this group awhile ago i think it was [thank you] it was the best thing i ever did they made me feel so good the moment i stepped foot into the hospital.My good news is that i am pcru i just found out today my number is .001 and pcr says it's negative i am so excited because my old Dr. said that if you don't reach pcru within 18 months you probably will never get there, it took me 2 years and 10 months to reach it, so if it's taking you longer to reach pcru don't give up you could still get there it doesn't matter how long it takes.I could not have lived thru this cml without all of you so i thank you so much for being there. > Esther > ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
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