Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 Hi Aliza, and everyone, I started the Zero Club on March 27, 2001. That was the day that I took my first dose of Gleevec (it was called STI571 then). This was in the early days of Gleevec. The initial trials showed a remarkable response to CML. I recall that the hottest subject on the CML lists then was where the new clinical trials were opening up. For patients like me who had failed on interferon we were scrambling to get into a trial. The lists were full of many patient stories of how miraculous Gleevec was. We knew that if we could get the drug, we would be fine. It was this HOPE that kept us going. Back in August of 2000 I applied to 4 different centers to join a clinical trial. I finally got the call from OHSU in March 2001 to join the 'Expanded Access' trial with Dr. Druker and Dr. Mauro. The 'Expanded Access' was created by Novartis specifically to help those patients who had failed on Interferon and had no other option for treatment. Gleevec was still in trial and waiting for FDA approval. Credit for the 'Expanded Access' this trial goes to McNamara (# 6 in the Zero Club) who organized a petition to Novartis to help the plight of those patients who couldn't get access to the drug. I'm also indebted to the Novartis team in Ringiskiddy Ireland who scrambled to complete the plant in so that we would have access to the drug. They worked right through Christmas that year to make it happen. The lists were full of stories of people achieving remission on STI571. We knew that if we would have access to the drug, we would be fine. I decided to post a congratulatory message each time I discovered a patient who achieved CCR (Complete Cytogenic Response). This was in the days before PCR testing. The requirement for entry in the club is still a result of 0/20 via a bone marrow aspiration. # 1 in the Zero Club is Marty Gartenberg. He was most helpful to me and all my list friends in those early days when all we had was HOPE. He filled the list with humor and encouragement. He achieved his remission via a Bone Marrow Transplant and is still very active in assisting transplant patients. He doesn't post on the lists anymore, but does join us on the Tuesday evening chats. Six months after starting Gleevec I became number # 102 in the Zero Club. What a thrill for me. This achievement was the turning point for me and my battle with this disease. It signaled that CML was no longer a life threatening disease and that I would be able to live out a normal existence by taking one pill daily. My most recent Zero Club member ( #1169) is Val Greenwood who posts on the UK site. , I have always had the idea of having a Zero Club meeting at some point. Las Vegas would be an ideal place. It would require a significant level of organization. It can be done. I recall being part of the team that organized the Appreciation Album for Dr. Druker. You can still see it on Jerry's site. A note for Lottie: You are one of the oldest 'turtles' that I know. Both and have already crossed the finish line. Your turn will come. 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 3.6 log reduction Sep/07 3.5 log reduction Feb/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of vegasrnjen@... Sent: March 12, 2008 10:48 PM Subject: Re: [ ] Re: aliza zero club Aliza- Zero club is a club that Zavie started a long time ago for people who have reached a certain level of remission. Its a club everyone should shoot for. I am sure he will explain it better. Zavie- take it away..... Hugs and Hope- 35 CML 5/13/05 Gleevec 800mg until 8/07 Spyrcel 100 mg since 9/07 Wife and mother of 3 (12,9,7) # 907 in Zavie's Zero Club **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money. <http://money.aol.com/tax?NCID=aolprf00030000000001> aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 Hello everyone- I'm in for Vegas- if we can make it happen. I'd love to meet you all- my heroes. Chi --- Zavie miller <zmiller@...> wrote: > Hi Aliza, and everyone, > > I started the Zero Club on March 27, 2001. That was > the day that I took my > first dose of Gleevec (it was called STI571 then). > > This was in the early days of Gleevec. The initial > trials showed a > remarkable response to CML. I recall that the > hottest subject on the CML > lists then was where the new clinical trials were > opening up. For patients > like me who had failed on interferon we were > scrambling to get into a trial. > > > The lists were full of many patient stories of how > miraculous Gleevec was. > We knew that if we could get the drug, we would be > fine. It was this HOPE > that kept us going. Back in August of 2000 I applied > to 4 different centers > to join a clinical trial. I finally got the call > from OHSU in March 2001 to > join the 'Expanded Access' trial with Dr. Druker and > Dr. Mauro. > > The 'Expanded Access' was created by Novartis > specifically to help those > patients who had failed on Interferon and had no > other option for treatment. > Gleevec was still in trial and waiting for FDA > approval. Credit for the > 'Expanded Access' this trial goes to McNamara > (# 6 in the Zero Club) > who organized a petition to Novartis to help the > plight of those patients > who couldn't get access to the drug. I'm also > indebted to the Novartis team > in Ringiskiddy Ireland who scrambled to complete the > plant in so that we > would have access to the drug. They worked right > through Christmas that year > to make it happen. > > The lists were full of stories of people achieving > remission on STI571. We > knew that if we would have access to the drug, we > would be fine. > > I decided to post a congratulatory message each time > I discovered a patient > who achieved CCR (Complete Cytogenic Response). This > was in the days before > PCR testing. The requirement for entry in the club > is still a result of 0/20 > via a bone marrow aspiration. > > # 1 in the Zero Club is Marty Gartenberg. He was > most helpful to me and all > my list friends in those early days when all we had > was HOPE. He filled the > list with humor and encouragement. He achieved his > remission via a Bone > Marrow Transplant and is still very active in > assisting transplant patients. > He doesn't post on the lists anymore, but does join > us on the Tuesday > evening chats. > > Six months after starting Gleevec I became number # > 102 in the Zero Club. > What a thrill for me. This achievement was the > turning point for me and my > battle with this disease. It signaled that CML was > no longer a life > threatening disease and that I would be able to live > out a normal existence > by taking one pill daily. > > My most recent Zero Club member ( #1169) is Val > Greenwood who posts on the > UK site. > > , I have always had the idea of having a > Zero Club meeting at some > point. Las Vegas would be an ideal place. It would > require a significant > level of organization. It can be done. I recall > being part of the team that > organized the Appreciation Album for Dr. Druker. You > can still see it on > Jerry's site. > > A note for Lottie: You are one of the oldest > 'turtles' that I know. Both > and have already crossed the finish > line. Your turn will > come. > > 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 > 3.6 log reduction Sep/07 > 3.5 log reduction Feb/08 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: > [mailto: ] On Behalf Of > vegasrnjen@... > Sent: March 12, 2008 10:48 PM > > Subject: Re: [ ] Re: aliza zero club > > Aliza- > > Zero club is a club that Zavie started a long time > ago for people who have > reached a certain level of remission. Its a club > everyone should shoot for. > I am sure he will explain it better. Zavie- take it > away..... > > > > Hugs and Hope- > > 35 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > **************It's Tax Time! Get tips, forms, and > advice on AOL Money & > Finance. (http://money. > <http://money.aol.com/tax?NCID=aolprf00030000000001> > aol.com/tax?NCID=aolprf00030000000001) > > [Non-text portions of this message have been > removed] > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 I WANNO GO TO VAGAS!! I WANNA GO TO VAGAS !! Bobby china neal <chimera46@...> wrote: Hello everyone- I'm in for Vegas- if we can make it happen. I'd love to meet you all- my heroes. Chi --- Zavie miller <zmiller@...> wrote: > Hi Aliza, and everyone, > > I started the Zero Club on March 27, 2001. That was > the day that I took my > first dose of Gleevec (it was called STI571 then). > > This was in the early days of Gleevec. The initial > trials showed a > remarkable response to CML. I recall that the > hottest subject on the CML > lists then was where the new clinical trials were > opening up. For patients > like me who had failed on interferon we were > scrambling to get into a trial. > > > The lists were full of many patient stories of how > miraculous Gleevec was. > We knew that if we could get the drug, we would be > fine. It was this HOPE > that kept us going. Back in August of 2000 I applied > to 4 different centers > to join a clinical trial. I finally got the call > from OHSU in March 2001 to > join the 'Expanded Access' trial with Dr. Druker and > Dr. Mauro. > > The 'Expanded Access' was created by Novartis > specifically to help those > patients who had failed on Interferon and had no > other option for treatment. > Gleevec was still in trial and waiting for FDA > approval. Credit for the > 'Expanded Access' this trial goes to McNamara > (# 6 in the Zero Club) > who organized a petition to Novartis to help the > plight of those patients > who couldn't get access to the drug. I'm also > indebted to the Novartis team > in Ringiskiddy Ireland who scrambled to complete the > plant in so that we > would have access to the drug. They worked right > through Christmas that year > to make it happen. > > The lists were full of stories of people achieving > remission on STI571. We > knew that if we would have access to the drug, we > would be fine. > > I decided to post a congratulatory message each time > I discovered a patient > who achieved CCR (Complete Cytogenic Response). This > was in the days before > PCR testing. The requirement for entry in the club > is still a result of 0/20 > via a bone marrow aspiration. > > # 1 in the Zero Club is Marty Gartenberg. He was > most helpful to me and all > my list friends in those early days when all we had > was HOPE. He filled the > list with humor and encouragement. He achieved his > remission via a Bone > Marrow Transplant and is still very active in > assisting transplant patients. > He doesn't post on the lists anymore, but does join > us on the Tuesday > evening chats. > > Six months after starting Gleevec I became number # > 102 in the Zero Club. > What a thrill for me. This achievement was the > turning point for me and my > battle with this disease. It signaled that CML was > no longer a life > threatening disease and that I would be able to live > out a normal existence > by taking one pill daily. > > My most recent Zero Club member ( #1169) is Val > Greenwood who posts on the > UK site. > > , I have always had the idea of having a > Zero Club meeting at some > point. Las Vegas would be an ideal place. It would > require a significant > level of organization. It can be done. I recall > being part of the team that > organized the Appreciation Album for Dr. Druker. You > can still see it on > Jerry's site. > > A note for Lottie: You are one of the oldest > 'turtles' that I know. Both > and have already crossed the finish > line. Your turn will > come. > > 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 > 3.6 log reduction Sep/07 > 3.5 log reduction Feb/08 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: > [mailto: ] On Behalf Of > vegasrnjen@... > Sent: March 12, 2008 10:48 PM > > Subject: Re: [ ] Re: aliza zero club > > Aliza- > > Zero club is a club that Zavie started a long time > ago for people who have > reached a certain level of remission. Its a club > everyone should shoot for. > I am sure he will explain it better. Zavie- take it > away..... > > > > Hugs and Hope- > > 35 > CML 5/13/05 > Gleevec 800mg until 8/07 > Spyrcel 100 mg since 9/07 > Wife and mother of 3 (12,9,7) > # 907 in Zavie's Zero Club > > **************It's Tax Time! Get tips, forms, and > advice on AOL Money & > Finance. (http://money. > <http://money.aol.com/tax?NCID=aolprf00030000000001> > aol.com/tax?NCID=aolprf00030000000001) > > [Non-text portions of this message have been > removed] > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 Zavie, I will never forget my number 111 what a winner I felt like when you gave me that number almost 7 years ago and still do. ez Quote Link to comment Share on other sites More sharing options...
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