Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Marilee Take heart and be strong for your friend! There are more tools and weapons for CML beside Gleevec. Most important for her is to find out why the Gleevec has stopped working. I am sure her Dr(s) are doing that. The Sprycel product and the new Novartis product maybe able to help. Keep us posted and keep your chin up! --- marileeworley1956 <marileeworley1956@...> wrote: > myst friend has lukemia. she has survivied 19 years. > I have known her > 2. She is such a wonderful person. Her glyveic > stopped working and she > is waiting to start on the new drug. She is getting > very sick. I am so > depressed I don't know what to say to her, we just > sit and talk for > hours. She found out yesterday it was ful-blown. I > have been crying for > two days. I love her. I have lost three loved ones > this year to > cancer.I need to help her be strong. But I am so > scared. > > ________________________________________________________________________________\ ____ Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. http://farechase./promo-generic-14795097 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2007 Report Share Posted March 2, 2007 > > > myst friend has lukemia. she has survivied 19 years. > > I have known her > > 2. She is such a wonderful person. Her glyveic > > stopped working and she > > is waiting to start on the new drug. She is getting > > very sick. I am so > > depressed I don't know what to say to her, we just > > sit and talk for > > hours. She found out yesterday it was ful-blown. I > > have been crying for > > two days. I love her. I have lost three loved ones > > this year to > > cancer.I need to help her be strong. But I am so > > scared. > > > > > > > > > ______________________________________________________________________ ______________ > Now that's room service! Choose from over 150,000 hotels > in 45,000 destinations on Travel to find your fit. > http://farechase./promo-generic-14795097 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 Mel I may have missed some posts but please tell me that your doctor has suggested you try another medication like Sprycel or Tasigna????? Like I said-I may have missed something. You cant just stop! How long have you had CML and how long were you on Gleevec? Sharon _____ From: [mailto: ] On Behalf Of MEL SWERLEIN Sent: Saturday, April 03, 2010 8:02 AM Subject: Re: [ ] Re: out of remission hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i'm not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ________________________________ From: d'Araille <darajekgo2 (DOT) <mailto:darajek%40go2.pl> pl> groups (DOT) <mailto:%40> com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 .. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i'm not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much > mel ---------------------------- Hi Mel, I do not think it matters what the cause of the cml cells was (like your possible radiation)....a cml cell is still a cml cell and these drugs are targeted to those cells (unless yours are highly mutated or something). I think you need to see one of the few top cml specialists to help with a plan for treatment. Your cml cells need to be tested for any mutations....also maybe a bmb to see if there are other chromosomal changes that you are dealing with. I do not think you should be treated by just a local oncologist with limited cml experience. So, this means, depending on what part of the country you live in.....two of the best choices would be either Dr. Talpaz in Ann Arbor, Michigan.....or Dr. Druker and associates in Portland, Oregon....and there are some others. I think you need to make the decision to see one of these doctors asap and you don't even need a referral (unless your insurance requires it). You can call and make your own appointment. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 Hi Mel, has your doctor not suggested you try another drug, like sprycel or Tasigna? I am in my 6th trial, the Ariad trial and it is working well for me. I go to the U. of Michigan, Dr. Talpaz is my doctor. Have you been tested for mutations? and is your doctor a CML specialist? If not, I suggest you email Dr. Druker or Dr. Talpaz for some advice. Good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: MEL SWERLEIN <mswerlein@...> Subject: Re: [ ] Re: out of remission Date: Saturday, April 3, 2010, 11:02 AM  hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i' m not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ____________ _________ _________ __ From: d'Araille <darajekgo2 (DOT) pl> groups (DOT) com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission  Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 hi a i have just got an apointment at the cleveland clinic. im not sure what's up with my doctor. he doesn't seem to hopeful. i can't live that way. i have seen so many miricles in my life that i will always give life a chance. the clevelend clinic has given me an appointment for about 2 weeks from now. i'll keep ya posted. thanks so much for all sugestions, positive energy, and prayer. talk to ya later. love ya all mel ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Sat, April 3, 2010 3:52:42 PM Subject: Re: [ ] Re: out of remission  Hi Mel, has your doctor not suggested you try another drug, like sprycel or Tasigna? I am in my 6th trial, the Ariad trial and it is working well for me. I go to the U. of Michigan, Dr. Talpaz is my doctor. Have you been tested for mutations? and is your doctor a CML specialist? If not, I suggest you email Dr. Druker or Dr. Talpaz for some advice. Good luck, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: MEL SWERLEIN <mswerlein (DOT) com> Subject: Re: [ ] Re: out of remission groups (DOT) com Date: Saturday, April 3, 2010, 11:02 AM  hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i' m not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ____________ _________ _________ __ From: d'Araille <darajekgo2 (DOT) pl> groups (DOT) com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission  Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 hi Sharon thanks so much for the response. no my doctor has adapted a wait and see stategy. i have made myself an apointment with the cleveland clinic. i will keep everyone posted. my love, thoughts mel ________________________________ From: Sharon Teichera <onthewtr@...> Sent: Sat, April 3, 2010 12:17:31 PM Subject: RE: [ ] Re: out of remission  Mel I may have missed some posts but please tell me that your doctor has suggested you try another medication like Sprycel or Tasigna????? Like I said-I may have missed something. You cant just stop! How long have you had CML and how long were you on Gleevec? Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of MEL SWERLEIN Sent: Saturday, April 03, 2010 8:02 AM groups (DOT) com Subject: Re: [ ] Re: out of remission hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i' m not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ____________ _________ _________ __ From: d'Araille <darajekgo2 (DOT) <mailto:darajek% 40go2.pl> pl> groups (DOT) <mailto:% 40groups. com> com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 Mel, where do you live, I go to the Cleveland Clinic on Rockside for labs every week, do you go down town or Rockside? a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: MEL SWERLEIN <mswerlein (DOT) com> Subject: Re: [ ] Re: out of remission groups (DOT) com Date: Saturday, April 3, 2010, 11:02 AM  hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i' m not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ____________ _________ _________ __ From: d'Araille <darajekgo2 (DOT) pl> groups (DOT) com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission  Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2010 Report Share Posted April 4, 2010 I am soooooo glad. Keep us posted. We are here to help. Sharon _____ From: [mailto: ] On Behalf Of MEL SWERLEIN Sent: Saturday, April 03, 2010 3:00 PM Subject: Re: [ ] Re: out of remission hi Sharon thanks so much for the response. no my doctor has adapted a wait and see stategy. i have made myself an apointment with the cleveland clinic. i will keep everyone posted. my love, thoughts mel ________________________________ From: Sharon Teichera <onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net> groups (DOT) <mailto:%40> com Sent: Sat, April 3, 2010 12:17:31 PM Subject: RE: [ ] Re: out of remission Mel I may have missed some posts but please tell me that your doctor has suggested you try another medication like Sprycel or Tasigna????? Like I said-I may have missed something. You cant just stop! How long have you had CML and how long were you on Gleevec? Sharon _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of MEL SWERLEIN Sent: Saturday, April 03, 2010 8:02 AM groups (DOT) com Subject: Re: [ ] Re: out of remission hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i' m not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ____________ _________ _________ __ From: d'Araille <darajekgo2 (DOT) <mailto:darajek% 40go2.pl> pl> groups (DOT) <mailto:% 40groups. com> com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2010 Report Share Posted April 4, 2010 hey a thats a good question. i think i go to the main complex. i will call on monday just to make sure. catch ya later mel ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Sat, April 3, 2010 6:48:02 PM Subject: Re: [ ] Re: out of remission  Mel, where do you live, I go to the Cleveland Clinic on Rockside for labs every week, do you go down town or Rockside? a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 11/2009 PCR 0.034 #840 Zavie's Zero Club From: MEL SWERLEIN <mswerlein (DOT) com> Subject: Re: [ ] Re: out of remission groups (DOT) com Date: Saturday, April 3, 2010, 11:02 AM  hi anna i want to thank you for responding to my posting. i have been using the green tea as you suggested and am willing to try anything else you can think of. my doctor has said (not in so many words) that im screwed and therapy may just not work for me. i recieved massive amounts of radiatiom on a job site and he says that it is more than likely the cause of my cml and if so wont respond to any therapy. well.......i' m not that negative. i will go down fighting. i have to much to live for, wife kids and grand kids. again. thanks so much mel ____________ _________ _________ __ From: d'Araille <darajekgo2 (DOT) pl> groups (DOT) com Sent: Sun, March 21, 2010 6:58:17 PM Subject: Re: [ ] Re: out of remission  Hi Mel, Get yourself on a strong brew of green tea 3 to 4 times a day. Brew from leaves in boiled and slightly cooled water (around 80 - 90 degrees celsius, NOT boiling hot ). It will bring your WBC and platelets count down to a healthy level and then docs can decide what to do next. You need to top up on your iron levels at the same time with some iron supplements, folic acid to help absorb iron and vitamin C otherwise you may end up anemic as too much green tea will stop iron from absorbing in your body. Read my story here: http://onephotograp haday.wordpress. com/pregnancy- and-cml/ to find out more. Any questions e-mail me darajekgo2 (DOT) pl All the Best > > hello folks > i monitor your advice everyday and have found some really good clues on how to live with CML. my question is what happens when your on gleevec the dose has been doubled and you are no longer in remission. i feel awful. my wbc are 280,000 and my platelets are at about 300,000. i'm tired and feel worthless. please don't suggest interferon, i am deathly allergic to it. it had been tried however my throat swelled shut after the first few minutes of the infusion. any ideas are welcome. thanks so much!!! > mel > > > > > Quote Link to comment Share on other sites More sharing options...
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