Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Hi Lottie, I'm approaching the 10 year mark since diagnosis. If it wasn't for all those who came before me, I wouldn't be here today. If it wasn't for our aggressiveness in seeking out treatment, we wouldn't be here today. The online CML lists have saved many lives. All the Zero Club members are special. All our turtles are special. Maui has shown us the way. The rest will follow. 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 Lottie Duthu Sent: May-05-09 4:06 AM CML Subject: [ ] Ol' timers Dear , The Golden Girls? Hear that, Bobby? I'm sure there are some members who have had CML as long or longer, but maybe not as many trials. I am not a passive patient, either, and it makes doctors nervous. When I was in the hospital over Christmas holidays with C-difficile, I asked the doctor about my neutrophils. His answer was, " you sure know a lot " . My retort was " not enough. " My son and his wife were visiting and started laughing, but he never answered my question. I had serious questions because they put me in isolation when I became neutopenic. I told you that you had a colorful past with CML, see you are just full of stories. I think we have been " seasoned " enough, I would like to see some results. That is comical, walking up to someone and saying you want what they have. I understand the triple sec you were on was quite harsh, the HHT-INF was bad enough for me, I couldn't wait to get off of it and pull that tube out of my chest. Us ol'timers could sit around and have a fireside chat. You know Bob is an ol'timer, too, we could invite him to join our party. I think Ceil Schwartz is around a decade, too, so she could be on our list, too. I'm just about at the decade and a half mark. Maybe Zavie has something in his bag of tricks for that level. It's been a long haul, but you know what they say, " when the going gets tough, the tough get going. " I would just like to slow down for a bit. LOL Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 mazal tov my friend for the 10 years anniversery see you next month giora [ ] Ol' timers Dear , The Golden Girls? Hear that, Bobby? I'm sure there are some members who have had CML as long or longer, but maybe not as many trials. I am not a passive patient, either, and it makes doctors nervous. When I was in the hospital over Christmas holidays with C-difficile, I asked the doctor about my neutrophils. His answer was, " you sure know a lot " . My retort was " not enough. " My son and his wife were visiting and started laughing, but he never answered my question. I had serious questions because they put me in isolation when I became neutopenic. I told you that you had a colorful past with CML, see you are just full of stories. I think we have been " seasoned " enough, I would like to see some results. That is comical, walking up to someone and saying you want what they have. I understand the triple sec you were on was quite harsh, the HHT-INF was bad enough for me, I couldn't wait to get off of it and pull that tube out of my chest. Us ol'timers could sit around and have a fireside chat. You know Bob is an ol'timer, too, we could invite him to join our party. I think Ceil Schwartz is around a decade, too, so she could be on our list, too. I'm just about at the decade and a half mark. Maybe Zavie has something in his bag of tricks for that level. It's been a long haul, but you know what they say, " when the going gets tough, the tough get going. " I would just like to slow down for a bit. LOL Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Speaking of anniversaries, I have one too this May, 14 years!! Congrats to everyone, Bobby On Tue, May 5, 2009 at 10:55 AM, giora <giora1@...> wrote: > > > mazal tov my friend for the 10 years anniversery > see you next month > giora > > [ ] Ol' timers > > Dear , > The Golden Girls? Hear that, Bobby? I'm sure there are some members who > have > had CML as long or longer, but maybe not as many trials. I am not a passive > patient, either, and it makes doctors nervous. When I was in the hospital > over Christmas holidays with C-difficile, I asked the doctor about my > neutrophils. His answer was, " you sure know a lot " . My retort was " not > enough. " My son and his wife were visiting and started laughing, but he > never answered my question. I had serious questions because they put me in > isolation when I became neutopenic. > I told you that you had a colorful past with CML, see you are just full of > stories. I think we have been " seasoned " enough, I would like to see some > results. That is comical, walking up to someone and saying you want what > they have. I understand the triple sec you were on was quite harsh, the > HHT-INF was bad enough for me, I couldn't wait to get off of it and pull > that tube out of my chest. Us ol'timers could sit around and have a > fireside > chat. You know Bob is an ol'timer, too, we could invite him to join > our party. I think Ceil Schwartz is around a decade, too, so she could be > on > our list, too. > I'm just about at the decade and a half mark. Maybe Zavie has something in > his bag of tricks for that level. It's been a long haul, but you know what > they say, " when the going gets tough, the tough get going. " I would just > like to slow down for a bit. LOL > Blessings, > Lottie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2009 Report Share Posted May 5, 2009 Dear Lottie, I'd be proud to join you at the fireside chat but I'm afraid you'd have to change the group's name from " The Golden Girls " to " The Golden Oldies " ---unless you know something that I don't!!!! Bob , Granger, Indiana > > Dear , > The Golden Girls? Hear that, Bobby? I'm sure there are some members who have had CML as long or longer, but maybe not as many trials. I am not a passive patient, either, and it makes doctors nervous. When I was in the hospital over Christmas holidays with C-difficile, I asked the doctor about my neutrophils. His answer was, " you sure know a lot " . My retort was " not enough. " My son and his wife were visiting and started laughing, but he never answered my question. I had serious questions because they put me in isolation when I became neutopenic. > I told you that you had a colorful past with CML, see you are just full of stories. I think we have been " seasoned " enough, I would like to see some results. That is comical, walking up to someone and saying you want what they have. I understand the triple sec you were on was quite harsh, the HHT-INF was bad enough for me, I couldn't wait to get off of it and pull that tube out of my chest. Us ol'timers could sit around and have a fireside chat. You know Bob is an ol'timer, too, we could invite him to join our party. I think Ceil Schwartz is around a decade, too, so she could be on our list, too. > I'm just about at the decade and a half mark. Maybe Zavie has something in his bag of tricks for that level. It's been a long haul, but you know what they say, " when the going gets tough, the tough get going. " I would just like to slow down for a bit. LOL > Blessings, > Lottie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2009 Report Share Posted May 6, 2009 Hi group members ; here i go again belly aching, but this is the place to get the best feedback, this is my dilehma, as some of you may know i had triple bypass 15 yrs. ago and thank god asymtomatic but after 6 months on gleevec( almost 3 yrs. ago) i began feeling chest pains, burning in the chest increased athsma attacks presure in the arms andback ect. however it goes away after a month or so but i had a brochial infection this year so i atributed the pains to it. however last fri. i got jaw pain and a feeling of choking with all the above symtoms so i called my cardio and his scheduled a carthererization next thurs. I had a stresss test last year and everything was fine. the bottom line is i'm scared stiff: has anyone had one in spite of the gleevec/cml? is this potencially dangerous? i'm ready to cancel the whole thing i'm afraid to complecate things . thanks in advance for your input. aliza yaffa **************Big savings on Dell’s most popular laptops. Now starting at $449! (http://pr.atwola.com/promoclk/100126575x1221827510x1201399090/aol?redir=http:%2\ F%2Fad.doubleclick.net%2Fclk%3B214663377%3B36502382%3Bh) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2009 Report Share Posted May 7, 2009 I have been on Gleevec since 1999. I had some similar symptoms to your (but I don't have your heart history) and they were attributed to acid reflux. I now take aciphex and watch my diet and that's controlled the problem. I understand your concern about " making things worse, " but maybe you'll find that there's nothing to worry about???? Wish I could be of more help and God bless, Gay On May 6, 2009, at 6:13 PM, taina2044@... wrote: > > > Hi group members ; > here i go again belly aching, but this is the place to get the best > feedback, > this is my dilehma, as some of you may know i had triple bypass 15 > yrs. ago > and thank god asymtomatic but after 6 months on gleevec( almost 3 yrs. > ago) i began feeling chest pains, burning in the chest increased > athsma > attacks presure in the arms andback ect. however it goes away after > a month or so > but i had a brochial infection this year so i atributed the pains to > it. > however last fri. i got jaw pain and a feeling of choking with all > the above > symtoms so i called my cardio and his scheduled a carthererization > next > thurs. I had a stresss test last year and everything was fine. > the bottom line is i'm scared stiff: has anyone had one in spite of > the > gleevec/cml? > is this potencially dangerous? i'm ready to cancel the whole thing i'm > afraid to complecate things . > thanks in advance for your input. > aliza yaffa > **************Big savings on Dell’s most popular laptops. Now > starting at > $449! > (http://pr.atwola.com/promoclk/100126575x1221827510x1201399090/aol?redir=http:%2\ F%2Fad.doubleclick.net%2Fclk%3B214663377%3B36502382%3Bh > ) > > Quote Link to comment Share on other sites More sharing options...
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