Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Zavie (age 71) dxd AUG/99 _____ From: [mailto: ] On Behalf Of Lottie Duthu Sent: March-25-10 1:52 AM CML Subject: [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 hi zavie you forgot my name. giagnosed 3/2000 exactly 10 years ago. i would like to wish you and all our jewish members and their family a very happy and kosher passover. Giora [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Hello Zavie \Lottie The hospital has figured that I was in the hospital for CML Dec 11 1977, another 1 year waiting around with it .... but the firm date is 1977. was in hospital for my daughters birthday Dec 11`,. so this December 11th it will be 33 years. On another note: Saw the Dr. today, he was pleased in fact very pleased, he said that I had a log reduction,(I sent you a copy of that PCR) but it was so small against last one, that he said you have not been on any treatment for  over 5 months and your counts are remarkable, wbc goes from 2,.1 up to 3.0 and back down 2.8 etc, this is all without meds. The doctor you talked with and the one fromEngland said " leave the man alone " all we doctors are doing is making him sick. I have felt excellent without meds. for months.  Dr. has said that he would start some form of treatment if my PCR/Abl changes (right now it says no change from last six reports). I think you should start another list and put me on it lol. My doctor said many many cml patients will reach your level of time if not a complete cure as time goes on. As for now all CML patients should keep on trucking. Look at Lottie how she came in under the wire. We are still looking into files, from Dr's . prior to 1977, there may be some notes  about the summer before that with any blood reports that may or may not refer to problems that could be traced back to CML starting. We could only find 47 BMB I thought I had more but who can tell what old records will bring up. I feel they must had done some in 1977 or 1976. I can remember the original Dr.believed in BMB every 3 months. (he is retired now). I will start some form of treatment, next week during Blood infusion for my high ferritine count. So for now I wait, lol seems that I have a lifetime of waiting..   skip DX'ed 33 years.. ________________________________ From: Zavie <zmiller@...> Sent: Thu, March 25, 2010 9:45:36 AM Subject: RE: [ ] Ten year veterans  Zavie (age 71) dxd AUG/99 _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lottie Duthu Sent: March-25-10 1:52 AM CML Subject: [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Gosh Lottie, I hope I haven't aged 13 years since 5/97. Bob > > Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. > > Skip Duffie - no exact date, but over 30 years > Bobby Doyle - 5/95 > Len Paschal - 7/96 > Bob - 5/97 > Lottie Duthu - 7/97 > Margot Menfee - 3/98 > Virginia Garner - 8/98 > Cogan - 9/98 > Sue Armour - 12/98 > Gay Bratton - ?/99 > Orenstein - 8/99 > McCleod - 3/2000 > Ruth Marcon - 4/2000 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Hi Skip, Finally they are listening to you. I am so pleased to hear the doctors words. Sometimes you have to stand back and say, OK what is going on here. Obviously treating you with the TKIs was making you sicker. You are the winner (by a country mile) when it comes to longest since diagnosis. Zavie 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 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of Skip Duffie Sent: March-25-10 2:18 PM Subject: Re: [ ] Ten year veterans Hello Zavie \Lottie The hospital has figured that I was in the hospital for CML Dec 11 1977, another 1 year waiting around with it .... but the firm date is 1977. was in hospital for my daughters birthday Dec 11`,. so this December 11th it will be 33 years. On another note: Saw the Dr. today, he was pleased in fact very pleased, he said that I had a log reduction,(I sent you a copy of that PCR) but it was so small against last one, that he said you have not been on any treatment for over 5 months and your counts are remarkable, wbc goes from 2,.1 up to 3.0 and back down 2.8 etc, this is all without meds. The doctor you talked with and the one fromEngland said " leave the man alone " all we doctors are doing is making him sick. I have felt excellent without meds. for months. Dr. has said that he would start some form of treatment if my PCR/Abl changes (right now it says no change from last six reports). I think you should start another list and put me on it lol. My doctor said many many cml patients will reach your level of time if not a complete cure as time goes on. As for now all CML patients should keep on trucking. Look at Lottie how she came in under the wire. We are still looking into files, from Dr's . prior to 1977, there may be some notes about the summer before that with any blood reports that may or may not refer to problems that could be traced back to CML starting. We could only find 47 BMB I thought I had more but who can tell what old records will bring up. I feel they must had done some in 1977 or 1976. I can remember the original Dr.believed in BMB every 3 months. (he is retired now). I will start some form of treatment, next week during Blood infusion for my high ferritine count. So for now I wait, lol seems that I have a lifetime of waiting.. skip DX'ed 33 years.. ________________________________ From: Zavie <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca> groups (DOT) <mailto:%40> com Sent: Thu, March 25, 2010 9:45:36 AM Subject: RE: [ ] Ten year veterans Zavie (age 71) dxd AUG/99 _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Lottie Duthu Sent: March-25-10 1:52 AM CML Subject: [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Thank you Giora. A HAPPY and SWEET PASSOVER to you, your family and friends and to all our Jewish friends on this list. Zavie 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 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of giora1 Sent: March-25-10 10:04 AM Subject: Re: [ ] Ten year veterans hi zavie you forgot my name. giagnosed 3/2000 exactly 10 years ago. i would like to wish you and all our jewish members and their family a very happy and kosher passover. Giora [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2010 Report Share Posted March 25, 2010 Skip, your story is very inspiring to us.Did you had to take Novartis test to see what the level of med are in your system before you stop treatment. I did that treatment but diD not hear back from Dr. Office. T Dxd 2/03 #764 Sent from my Verizon Wireless BlackBerry [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Hi Lottie, One more - Gale Bacon dx 3/2000 (3/24/2000) I celebrated my 10 years by checking back in with this wonderful group! :-) My husband and I have been so busy planning our upcoming vacation that we just plain forgot about my 10 yr anniversary date. LOL, Gale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Hi Skip: So glad to see your post and some good news. Glad your doing well. You really inspire everyone to keep going to beat CML in everyone's life. May we all be here to see it become a thing of the past. A. From: Skip Duffie <skipd_2002@...> Subject: Re: [ ] Ten year veterans Date: Thursday, March 25, 2010, 2:17 PM  Hello Zavie \Lottie The hospital has figured that I was in the hospital for CML Dec 11 1977, another 1 year waiting around with it .... but the firm date is 1977. was in hospital for my daughters birthday Dec 11`,. so this December 11th it will be 33 years. On another note: Saw the Dr. today, he was pleased in fact very pleased, he said that I had a log reduction,(I sent you a copy of that PCR) but it was so small against last one, that he said you have not been on any treatment for  over 5 months and your counts are remarkable, wbc goes from 2,.1 up to 3.0 and back down 2.8 etc, this is all without meds. The doctor you talked with and the one fromEngland said " leave the man alone " all we doctors are doing is making him sick. I have felt excellent without meds. for months.  Dr. has said that he would start some form of treatment if my PCR/Abl changes (right now it says no change from last six reports). I think you should start another list and put me on it lol. My doctor said many many cml patients will reach your level of time if not a complete cure as time goes on. As for now all CML patients should keep on trucking. Look at Lottie how she came in under the wire. We are still looking into files, from Dr's . prior to 1977, there may be some notes  about the summer before that with any blood reports that may or may not refer to problems that could be traced back to CML starting. We could only find 47 BMB I thought I had more but who can tell what old records will bring up. I feel they must had done some in 1977 or 1976. I can remember the original Dr.believed in BMB every 3 months. (he is retired now). I will start some form of treatment, next week during Blood infusion for my high ferritine count. So for now I wait, lol seems that I have a lifetime of waiting..   skip DX'ed 33 years.. ____________ _________ _________ __ From: Zavie <zmillersympatico (DOT) ca> groups (DOT) com Sent: Thu, March 25, 2010 9:45:36 AM Subject: RE: [ ] Ten year veterans  Zavie (age 71) dxd AUG/99 _____ From: groups (DOT) com [mailto:] On Behalf Of Lottie Duthu Sent: March-25-10 1:52 AM CML Subject: [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Chelsea Chamness - 1/2000 [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Hi Lottie I fit in there. I was diagnosed in 1992 bmt 1993 March 26th Relapsed 2004 Pcru 2008 699 Zavie's Zero club Judy Telford > > > From: Skip Duffie <skipd_2002@...> > Subject: Re: [ ] Ten year veterans > > Date: Thursday, March 25, 2010, 2:17 PM > > >  > > > > Hello Zavie \Lottie > The hospital has figured that I was in the hospital for CML Dec 11 1977, another 1 year waiting around with it .... > but the firm date is 1977. was in hospital for my daughters birthday Dec 11`,. > so this December 11th it will be 33 years. > > On another note: Saw the Dr. today, he was pleased in fact very pleased, he said that I had a log reduction,(I sent > you a copy of that PCR) but it was so small against last one, that he said you have not been on any treatment for >  over 5 months and your counts are remarkable, wbc goes from 2,.1 up to 3.0 and back down 2.8 etc, this is all without meds. > The doctor you talked with and the one fromEngland said " leave the man alone " all we doctors are doing is making him sick. > I have felt excellent without meds. for months.  Dr. has said that he would start some form of treatment > if my PCR/Abl changes (right now it says no change from last six reports). I think you should start another list > and put me on it lol. My doctor said many many cml patients will reach your level of time if not a complete cure > as time goes on. As for now all CML patients should keep on trucking. Look at Lottie how she came in > under the wire. > We are still looking into files, from Dr's . prior to 1977, there may be some notes  about the summer > before that with any blood reports that may or may not refer to problems that could be traced back > to CML starting. > > We could only find 47 BMB I thought I had more but who can tell what old records will bring up. I feel they > must had done some in 1977 or 1976. I can remember the original Dr.believed in BMB every 3 months. > (he is retired now). I will start some form of treatment, next week during Blood infusion for my high ferritine > count. So for now I wait, lol seems that I have a lifetime of waiting.. >  >  skip DX'ed 33 years.. > > ____________ _________ _________ __ > From: Zavie <zmillersympatico (DOT) ca> > groups (DOT) com > Sent: Thu, March 25, 2010 9:45:36 AM > Subject: RE: [ ] Ten year veterans > >  > > Zavie (age 71) > dxd AUG/99 > > _____ > > From: groups (DOT) com [mailto:] On Behalf Of Lottie > Duthu > Sent: March-25-10 1:52 AM > CML > Subject: [ ] Ten year veterans > > Here are our veterans who were diagnosed 10 or more years ago and if you > don't see your name here, just give me a nudge and let me know if there is > an error. > > Skip Duffie - no exact date, but over 30 years > Bobby Doyle - 5/95 > Len Paschal - 7/96 > Bob - 5/97 > Lottie Duthu - 7/97 > Margot Menfee - 3/98 > Virginia Garner - 8/98 > Cogan - 9/98 > Sue Armour - 12/98 > Gay Bratton - ?/99 > Orenstein - 8/99 > McCleod - 3/2000 > Ruth Marcon - 4/2000 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Congratulations to all who have passed the 10th anniversity. Seeing this reminds me that I slept through my 7th the last of week of Feb. H. > > Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. > > Skip Duffie - no exact date, but over 30 years > Bobby Doyle - 5/95 > Len Paschal - 7/96 > Bob - 5/97 > Lottie Duthu - 7/97 > Margot Menfee - 3/98 > Virginia Garner - 8/98 > Cogan - 9/98 > Sue Armour - 12/98 > Gay Bratton - ?/99 > Orenstein - 8/99 > McCleod - 3/2000 > Ruth Marcon - 4/2000 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Hello Not that I knew about, Last year I was pretty sick and in hospital about every 6 weeks so they might have given me a test. But one day while I was recovering they just took me off Nilotinib and Xjade. and that was that. I feel so much better without drugs...Saw the Doc yester and he is giving me about 6 more weeks without any drugs.(depends on PCR/Abl) My Hem doc has another doc keep tabs on me, every week. I find it interesting that my wbc bounces up and down without any meds. Never has that happened in 33 years, it use to start to rise, and get to about 100,000 and they would give me myleran every day for a while, the wbc would go down and we would start all over again. Not sure what is going on? SkipD dx'33 years or 34..  ________________________________ From: " mtadros9@... " <mtadros9@...> CML Group < > Sent: Thu, March 25, 2010 4:40:08 PM Subject: Re: [ ] Ten year veterans  Skip, your story is very inspiring to us.Did you had to take Novartis test to see what the level of med are in your system before you stop treatment. I did that treatment but diD not hear back from Dr. Office. T Dxd 2/03 #764 Sent from my Verizon Wireless BlackBerry [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2010 Report Share Posted March 27, 2010 Oh my goodness I don't see Zavie here????? From: Lori L <tippeeknu@...> Subject: Re: [ ] Ten year veterans Date: Friday, March 26, 2010, 12:05 AM Chelsea Chamness - 1/2000 [ ] Ten year veterans Here are our veterans who were diagnosed 10 or more years ago and if you don't see your name here, just give me a nudge and let me know if there is an error. Skip Duffie - no exact date, but over 30 years Bobby Doyle - 5/95 Len Paschal - 7/96 Bob - 5/97 Lottie Duthu - 7/97 Margot Menfee - 3/98 Virginia Garner - 8/98 Cogan - 9/98 Sue Armour - 12/98 Gay Bratton - ?/99 Orenstein - 8/99 McCleod - 3/2000 Ruth Marcon - 4/2000 Quote Link to comment Share on other sites More sharing options...
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