Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Hi Karine, This test examines 200 cells looking for a chromosome Philadelphia. The result is shown (2/200 ) or 2% cells found , (For example). When you achieve 0/200, (no cells found) in fish test, you achieved a CCR (Complete Cytogenetic Response). Bellow you can find more information about CML management. http://www.eutos.org/content/molecular_monitoring/information/pcr_testing/#e762 Best Regards Ciro Dx 04/2008 Glivec 400 mg since then De: [mailto: ] Em nome de Karine Vallier Enviada em: terça-feira, 19 de outubro de 2010 00:49 Para: Assunto: [ ] ?FISH TEST My mother who was diagnosed with CML May 2010 is having a FISH test tomorrow. Wandering if you guys could tell me a little about it and how soon should we get the results back. Thanks, Karine ________________________________ From: Lottie Duthu <lotajam@... <mailto:lotajam%40comcast.net> > CML < <mailto:%40> > Sent: Mon, October 18, 2010 5:18:32 PM Subject: [ ] We are not cured Dear Pat, That fundraiser was wonderful and I think everyone who participates deserves a round of applause. Even if you can't run or bide a bike, your participation in groups is also needed. Sue is right, you don't have to be a movie star. Some people are great at holding your hand and telling you that things get better. You don't have to be a psychologist to do that. When my brother went to Vietnam, he left his large French Poodle with my mother. When she was sick, he didn't eat, he just lay on the rug next to her bed. Something as simple as that is reward enough for some people. When I visited the sick, they were so happy to see any face, as it was the only one they saw all week. Whatever you do this is felt by even one person, then you are a blessing to that person. My thoughts about your question are where does this person come off saying that we are " cured " ? Our disease is something that is managed during the chronic phase. I would hope that this oranization would still contribute to research for a real cure. It's not over till the fat lady sings. You should get a lot of feedback on this question. I don't think anyone thinks of themselves as " cured " , certainly not anyone who has been on all of the trials, or the a person undergoing a BMT, like Jackie in Houston or Cheryl up in Canada. $100 million is not exactly chunk change, so I hope LLS is able to use everything that is not is not needed for their operating costs and not going to big CEO salaries. Is that more or less than they raised before, I wonder. LLS used to reimburse us up to $750 a year for our medicine and travel expenses, now they just give you $150 if the doctor is willing to sign on the dotted line to say that you are a patient in treatment for leukemia. As patients, we are having to do more with less. In our case, less is not more. Happy Monday, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Hi Ciro, Thank you for the information. I have to ask you if you are French? Just wandering because one of the reasons I belong to the group is for my mother who is French and their is a language barrier at times with her communication. Merci, Karine ________________________________ From: Ciro Baroni <ciro_guasti@...> Sent: Tue, October 19, 2010 8:02:23 AM Subject: RES: [ ] ?FISH TEST  Hi Karine, This test examines 200 cells looking for a chromosome Philadelphia. The result is shown (2/200 ) or 2% cells found , (For example). When you achieve 0/200, (no cells found) in fish test, you achieved a CCR (Complete Cytogenetic Response). Bellow you can find more information about CML management. http://www.eutos.org/content/molecular_monitoring/information/pcr_testing/#e762 Best Regards Ciro Dx 04/2008 Glivec 400 mg since then De: [mailto: ] Em nome de Karine Vallier Enviada em: terça-feira, 19 de outubro de 2010 00:49 Para: Assunto: [ ] ?FISH TEST My mother who was diagnosed with CML May 2010 is having a FISH test tomorrow. Wandering if you guys could tell me a little about it and how soon should we get the results back. Thanks, Karine ________________________________ From: Lottie Duthu <lotajam@... <mailto:lotajam%40comcast.net> > CML < <mailto:%40> > Sent: Mon, October 18, 2010 5:18:32 PM Subject: [ ] We are not cured Dear Pat, That fundraiser was wonderful and I think everyone who participates deserves a round of applause. Even if you can't run or bide a bike, your participation in groups is also needed. Sue is right, you don't have to be a movie star. Some people are great at holding your hand and telling you that things get better. You don't have to be a psychologist to do that. When my brother went to Vietnam, he left his large French Poodle with my mother. When she was sick, he didn't eat, he just lay on the rug next to her bed. Something as simple as that is reward enough for some people. When I visited the sick, they were so happy to see any face, as it was the only one they saw all week. Whatever you do this is felt by even one person, then you are a blessing to that person. My thoughts about your question are where does this person come off saying that we are " cured " ? Our disease is something that is managed during the chronic phase. I would hope that this oranization would still contribute to research for a real cure. It's not over till the fat lady sings. You should get a lot of feedback on this question. I don't think anyone thinks of themselves as " cured " , certainly not anyone who has been on all of the trials, or the a person undergoing a BMT, like Jackie in Houston or Cheryl up in Canada. $100 million is not exactly chunk change, so I hope LLS is able to use everything that is not is not needed for their operating costs and not going to big CEO salaries. Is that more or less than they raised before, I wonder. LLS used to reimburse us up to $750 a year for our medicine and travel expenses, now they just give you $150 if the doctor is willing to sign on the dotted line to say that you are a patient in treatment for leukemia. As patients, we are having to do more with less. In our case, less is not more. Happy Monday, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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