Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Hi Ruth, It is so great to hear from you and to know that you are doing well. What a unique way to mark your diagnosis. I certainly remember the Fall Ball with great fondness and will be forever grateful to Anita Rowlands for organizing it. I was diagnosed in October 1999. Went on Interferon for 4 months and ended up in hospital with Congestive Heart Failure. It took a full year before I could get into a clinical trial at OHSU with Dr. Druker and Dr. Mauro. Six months later I reached CCR and have been gradually heading towards PCRU. Considering the alternative, my life with CML has been a gift and an ongoing adventure. I celebrate my CML anniversary each time I assign a Zero Club number to a patient that reaches CCR. One month prior to the Fall Ball I had the honor of awarding myself number 102 in the Zero Club. The Fall Ball took place in Niagara Falls October 3-8, 2002. The participants were Anita and Bill Rowlands Geri Sehnert Janet Hansen Margot and Fred Menefee Ruth and Charlie Marcon Wayne and Diane Becken Zavie and Ida We had the best time. I have copied all the participants (hopefully I have their correct emails) and welcome them to post a few words on this site. Maybe someone can recall what the " 5 minuite " club was about. 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 marcon Sent: April 14, 2008 9:35 PM CMLHopegooglegroups; Subject: [ ] anniversary To All It's been a long time since I posted--a sign that I am feeling " normal " now that I am 8 years from my cml diagnosis. I still subscribe to the lists and enjoy seeing the names of the oldies and " meeting " the newbies. I was diagnosed in the Spring of 2000 at age 57; had a mini sct that failed to bring remission; started Gleevec in November 2000; reached remission in September 2001. It took till my second year of remission to feel true relief. After reaching remission I still worried " What if it comes back? " I always thought this at bedtime & then had trouble falling asleep (even though I took ativan & ambien for a year). Then one night--for whatever reason--when I asked myself that same question, the answer was " If it comes back they'll do something about it. " And so they have for those who cannot respond to Gleevec. Who could have imagined that the research would produce more options for treatment and better outcomes for sct's? The list was a lifeline for me in the beginning of my illness. And these many years later it remains a source of comfort and encouragement. No one needs to suffer in silence or be scared all their waking hours. My anniversary celebration: The Spring of 2001 I began marking my diagnosis by passing out carnations to family and friends, to vendors at the Farmers' Market, to the women at the coffee shop & at the bookstore where I get my NY Times. It makes us all happy & grateful that we've all marked another year. And it's a joy for me. I would love to hear from the first Spring Fling group and from the Niagara Falls group. If any one of you is reading this, please write me at marconenter (DOT) <mailto:marcon%40enter.net> net. I hope that this note will be a source of hope for those not in remission and a confirmation for those who are. Please withhold any praise for me--I did what I was told & was lucky that the chemistry worked for me. There were lots of times I didn't have a great attitude & I can still be my gloomy self more than several days a year. I probably shouldn't end with this sentence, but that's my reality. Some people share that reality and some don't. But we are all joined by adversity and understand each others' frustrations and fears, sorrows and joys. We are in community. And that is a wondrous thing. My very best regards to those of you who know and to those who don't Ruth Marcon tow, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 _____ This is a repost. I forgot Judy and Ken (no email address) and corrected two email addresses. Hi Ruth, It is so great to hear from you and to know that you are doing well. What a unique way to mark your diagnosis. I certainly remember the Fall Ball with great fondness and will be forever grateful to Anita Rowlands for organizing it. I was diagnosed in October 1999. Went on Interferon for 4 months and ended up in hospital with Congestive Heart Failure. It took a full year before I could get into a clinical trial at OHSU with Dr. Druker and Dr. Mauro. Six months later I reached CCR and have been gradually heading towards PCRU. Considering the alternative, my life with CML has been a gift and an ongoing adventure. I celebrate my CML anniversary each time I assign a Zero Club number to a patient that reaches CCR. One month prior to the Fall Ball I had the honor of awarding myself number 102 in the Zero Club. The Fall Ball took place in Niagara Falls October 3-8, 2002. The participants were Anita and Bill Rowlands Geri Sehnert Janet Hansen Judy and Ken Margot and Fred Menefee Ruth and Charlie Marcon Wayne and Diane Becken Zavie and Ida We had the best time. I have copied all the participants (hopefully I have their correct emails) and welcome them to post a few words on this site. Maybe someone can recall what the " 5 minuite " club was about. 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 marcon Sent: April 14, 2008 9:35 PM CMLHopegooglegroups; Subject: [ ] anniversary To All It's been a long time since I posted--a sign that I am feeling " normal " now that I am 8 years from my cml diagnosis. I still subscribe to the lists and enjoy seeing the names of the oldies and " meeting " the newbies. I was diagnosed in the Spring of 2000 at age 57; had a mini sct that failed to bring remission; started Gleevec in November 2000; reached remission in September 2001. It took till my second year of remission to feel true relief. After reaching remission I still worried " What if it comes back? " I always thought this at bedtime & then had trouble falling asleep (even though I took ativan & ambien for a year). Then one night--for whatever reason--when I asked myself that same question, the answer was " If it comes back they'll do something about it. " And so they have for those who cannot respond to Gleevec. Who could have imagined that the research would produce more options for treatment and better outcomes for sct's? The list was a lifeline for me in the beginning of my illness. And these many years later it remains a source of comfort and encouragement. No one needs to suffer in silence or be scared all their waking hours. My anniversary celebration: The Spring of 2001 I began marking my diagnosis by passing out carnations to family and friends, to vendors at the Farmers' Market, to the women at the coffee shop & at the bookstore where I get my NY Times. It makes us all happy & grateful that we've all marked another year. And it's a joy for me. I would love to hear from the first Spring Fling group and from the Niagara Falls group. If any one of you is reading this, please write me at marconenter (DOT) <mailto:marcon%40enter.net> net. I hope that this note will be a source of hope for those not in remission and a confirmation for those who are. Please withhold any praise for me--I did what I was told & was lucky that the chemistry worked for me. There were lots of times I didn't have a great attitude & I can still be my gloomy self more than several days a year. I probably shouldn't end with this sentence, but that's my reality. Some people share that reality and some don't. But we are all joined by adversity and understand each others' frustrations and fears, sorrows and joys. We are in community. And that is a wondrous thing. My very best regards to those of you who know and to those who don't Ruth Marcon tow, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Congrats on your Anniversary Ruth! :} [ ] anniversary To All It's been a long time since I posted--a sign that I am feeling " normal " now that I am 8 years from my cml diagnosis. I still subscribe to the lists and enjoy seeing the names of the oldies and " meeting " the newbies. I was diagnosed in the Spring of 2000 at age 57; had a mini sct that failed to bring remission; started Gleevec in November 2000; reached remission in September 2001. It took till my second year of remission to feel true relief. After reaching remission I still worried " What if it comes back? " I always thought this at bedtime & then had trouble falling asleep (even though I took ativan & ambien for a year). Then one night--for whatever reason--when I asked myself that same question, the answer was " If it comes back they'll do something about it. " And so they have for those who cannot respond to Gleevec. Who could have imagined that the research would produce more options for treatment and better outcomes for sct's? The list was a lifeline for me in the beginning of my illness. And these many years later it remains a source of comfort and encouragement. No one needs to suffer in silence or be scared all their waking hours. My anniversary celebration: The Spring of 2001 I began marking my diagnosis by passing out carnations to family and friends, to vendors at the Farmers' Market, to the women at the coffee shop & at the bookstore where I get my NY Times. It makes us all happy & grateful that we've all marked another year. And it's a joy for me. I would love to hear from the first Spring Fling group and from the Niagara Falls group. If any one of you is reading this, please write me at marconenter (DOT) net. I hope that this note will be a source of hope for those not in remission and a confirmation for those who are. Please withhold any praise for me--I did what I was told & was lucky that the chemistry worked for me. There were lots of times I didn't have a great attitude & I can still be my gloomy self more than several days a year. I probably shouldn't end with this sentence, but that's my reality. Some people share that reality and some don't. But we are all joined by adversity and understand each others' frustrations and fears, sorrows and joys. We are in community. And that is a wondrous thing. My very best regards to those of you who know and to those who don't Ruth Marcon tow, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Hi " Fall Ballers: " Just a note to let you know that I still fondly think of the great time we had at our Fall Ball. It was a wonderful opportunity to learn to know you all in person, something we should definitely repeat! I am doing well. I have been PCRU since January 2002 and stayed that way continuously. I am hoping to hear the same good news from all of you. Fred, too, sends you his best wishes. Margot and Fred -- [ ] anniversary To All It's been a long time since I posted--a sign that I am feeling " normal " now that I am 8 years from my cml diagnosis. I still subscribe to the lists and enjoy seeing the names of the oldies and " meeting " the newbies. I was diagnosed in the Spring of 2000 at age 57; had a mini sct that failed to bring remission; started Gleevec in November 2000; reached remission in September 2001. It took till my second year of remission to feel true relief. After reaching remission I still worried " What if it comes back? " I always thought this at bedtime & then had trouble falling asleep (even though I took ativan & ambien for a year). Then one night--for whatever reason--when I asked myself that same question, the answer was " If it comes back they'll do something about it. " And so they have for those who cannot respond to Gleevec. Who could have imagined that the research would produce more options for treatment and better outcomes for sct's? The list was a lifeline for me in the beginning of my illness. And these many years later it remains a source of comfort and encouragement. No one needs to suffer in silence or be scared all their waking hours. My anniversary celebration: The Spring of 2001 I began marking my diagnosis by passing out carnations to family and friends, to vendors at the Farmers' Market, to the women at the coffee shop & at the bookstore where I get my NY Times. It makes us all happy & grateful that we've all marked another year. And it's a joy for me. I would love to hear from the first Spring Fling group and from the Niagara Falls group. If any one of you is reading this, please write me at marcon@.... I hope that this note will be a source of hope for those not in remission and a confirmation for those who are. Please withhold any praise for me--I did what I was told & was lucky that the chemistry worked for me. There were lots of times I didn't have a great attitude & I can still be my gloomy self more than several days a year. I probably shouldn't end with this sentence, but that's my reality. Some people share that reality and some don't. But we are all joined by adversity and understand each others' frustrations and fears, sorrows and joys. We are in community. And that is a wondrous thing. My very best regards to those of you who know and to those who don't Ruth Marcon tow, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 Today is my 11th anniversary of my CML diagnosis. I was talking to my wife this morning about my anniversary and both of us decided that it seems a much longer time than 11 years. It's really hard to remember time before CML, probably due to the 4 years of Interferon. :-) It's also my 3rd anniversary of my kidney cancer diagnosis. I guess I'd be better off just staying in bed with the blanket over my head on May 20th. Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 HEY! ROBERT, GO AHEAD AND HIDE UNDER THE COVERS, ALL OF OUR PRAYERS AND GOOD WISHES AND CONGRATULATIONS WILL FIND YOU ANYWAY !! LOVE, BOBBY Bob <bob-stewart@...> wrote: Today is my 11th anniversary of my CML diagnosis. I was talking to my wife this morning about my anniversary and both of us decided that it seems a much longer time than 11 years. It's really hard to remember time before CML, probably due to the 4 years of Interferon. :-) It's also my 3rd anniversary of my kidney cancer diagnosis. I guess I'd be better off just staying in bed with the blanket over my head on May 20th. Bob , Granger, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 Dear Bob, Happy Anniversary and may you have many, many more. I definitely would not stay under the covers on such a monumentous day. It is the day that you became a warrior and every year that this date passes, you are reminded that you are still keeping up the good fight. Just think, it is a great time for medical science. NYC > > Today is my 11th anniversary of my CML diagnosis. I was talking to my wife this morning about my anniversary and both of us decided that it seems a much longer time than 11 years. It's really hard to remember time before CML, probably due to the 4 years of Interferon. :-) > It's also my 3rd anniversary of my kidney cancer diagnosis. I guess I'd be better off just staying in bed with the blanket over my head on May 20th. > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Happy anniversary, Bob, and many many more. My three-year CML anniversary is somewhere around now or in the last week or so, but I'm embarrassed to say I have no idea of the exact date -- just sometime in May 2005. I'll have to try to remember to ask my doc next time I see him. Warm wishes, > > Today is my 11th anniversary of my CML diagnosis. I was talking to my wife this morning about my anniversary and both of us decided that it seems a much longer time than 11 years. It's really hard to remember time before CML, probably due to the 4 years of Interferon. :-) > It's also my 3rd anniversary of my kidney cancer diagnosis. I guess I'd be better off just staying in bed with the blanket over my head on May 20th. > Bob , Granger, Indiana > > Quote Link to comment Share on other sites More sharing options...
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