Guest guest Posted July 27, 2008 Report Share Posted July 27, 2008 We can all remember the diagnosis day so vividly. Thank goodness for groups like this where we can come and share our fears and give others hope. Happy Anniversary Lottie. Twelve years....amazing...you are an inspiration to us all and a lovely lady! Here's to many many more years! > > Dear Group, > As we were walking into a restaurant last night, I asked Jimmy if he knew the signifance of the date and he said it was Friday, July 25. I had to remind him that is was my 12th CML anniversary. My mind and my feelings kept going back to that infamous date and the fear it struck in all of our hearts. It was like a delayed death sentence. Gradually over the years, more drugs appeared that gave us hope and as doctors learned more about the disease and the treatment, they learned about PK levels and new testing equipment that was better at testing and getting reliable results, how better to prescribe the right doses, although all doctors haven't caught up to that stage yet. When you are diagnosed, it comes as a surprise and you don't know anything about CML. Gleevec became the drug of choice until some of us were either intolerant or unresponsive. So the search was on for more drugs that we could tolerate. > I would like to say to all newcomers, to work hard at fighting the disease by arming yourself with knowledge, Find a doctor you are comfortable with and don't give up. We all have good days and bad days and our results can sometimes be baffling, leading us to think we are loosing our remission or something is amiss. We call those blips on the radar screen. Our counts can change due to an infection, or even the drugs used to treat the infection. Be wary, but not alarmed, it happens to us all. We need each other, because people on the ouside world don't know anything about CML and they don't understand what is happening to us. we didn't learn everything overnight and we continue to learn. We have challenges, but we meet them head on. No matter what your problem is, someone in the group has experienced it and will be willing to give you the benefit of their experience. Take heart, science is gaining and breaking new ground all of the time. For all the drugs we do hear about, there are dozens that are still in the experimental stage where they use mice. In the investigational stage, they use humans in Stages, I, II & III before it is presented to the FDA for approval. Then we hear the trumpets blaring to herald the new drug. One of them will be the cure. > Be happy and kind to everyone you meet and you will find that there are worse things to have than CML, because it is now considered a chronic disease to be managed like diabetes. > Blessings and best wishes, > Lottie (the old lady) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 HI ,LOTTIE OLD GIRL, AND CONGRATULATIONS ON REACHING ANOTHER ANNIVERSARY!!! THESE ANNIVERSARIES ARE MORE IMPORTANT THAN BIRTHDAYS ESPECIALLY TO US OLD WAR HORSES! WE THOUGHT WE WOULDN'T MAKE IT 5 YEARS, AND HERE WE ARE, 78 AND 80, HOW'S THAT FOR BEATING THE ODDS I SPENT THE WEEKEND WITH LEN AND ERNIE PASCHAL, SHE'S ANOTHER ONE THAT'S BEEN FIGHTING CML FOR 11 OR SO YEARS, AND YOU ARE SO RIGHT, EDUCATING ONESELF IS THE BEST WAY TO FIGHT ANY DISEASE, AND HAVING THE SUPPORT OF A GROUP LIKE THIS IS JUST AS GOOD AS HAVING A GOOD DOCTOR. BLESS YOU LOTTIE, AND HERE'S TO MANY MORE ANNIVERSARIES, FOR YOU AND FOR EVERYONE, LOVE, BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) From: Lottie Duthu <lotajam@...> Subject: [ ] CML anniversary " CML " < > Date: Sunday, July 27, 2008, 4:04 AM Dear Group, As we were walking into a restaurant last night, I asked Jimmy if he knew the signifance of the date and he said it was Friday, July 25. I had to remind him that is was my 12th CML anniversary. My mind and my feelings kept going back to that infamous date and the fear it struck in all of our hearts. It was like a delayed death sentence. Gradually over the years, more drugs appeared that gave us hope and as doctors learned more about the disease and the treatment, they learned about PK levels and new testing equipment that was better at testing and getting reliable results, how better to prescribe the right doses, although all doctors haven't caught up to that stage yet. When you are diagnosed, it comes as a surprise and you don't know anything about CML. Gleevec became the drug of choice until some of us were either intolerant or unresponsive. So the search was on for more drugs that we could tolerate. I would like to say to all newcomers, to work hard at fighting the disease by arming yourself with knowledge, Find a doctor you are comfortable with and don't give up. We all have good days and bad days and our results can sometimes be baffling, leading us to think we are loosing our remission or something is amiss. We call those blips on the radar screen. Our counts can change due to an infection, or even the drugs used to treat the infection. Be wary, but not alarmed, it happens to us all. We need each other, because people on the ouside world don't know anything about CML and they don't understand what is happening to us. we didn't learn everything overnight and we continue to learn. We have challenges, but we meet them head on. No matter what your problem is, someone in the group has experienced it and will be willing to give you the benefit of their experience. Take heart, science is gaining and breaking new ground all of the time. For all the drugs we do hear about, there are dozens that are still in the experimental stage where they use mice. In the investigational stage, they use humans in Stages, I, II & III before it is presented to the FDA for approval. Then we hear the trumpets blaring to herald the new drug. One of them will be the cure. Be happy and kind to everyone you meet and you will find that there are worse things to have than CML, because it is now considered a chronic disease to be managed like diabetes. Blessings and best wishes, Lottie (the old lady) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 Nicely said, dear Lottie. Happt 12th anniversary and many more. Love, > > Dear Group, > As we were walking into a restaurant last night, I asked Jimmy if he knew the signifance of the date and he said it was Friday, July 25. I had to remind him that is was my 12th CML anniversary. My mind and my feelings kept going back to that infamous date and the fear it struck in all of our hearts. It was like a delayed death sentence. Gradually over the years, more drugs appeared that gave us hope and as doctors learned more about the disease and the treatment, they learned about PK levels and new testing equipment that was better at testing and getting reliable results, how better to prescribe the right doses, although all doctors haven't caught up to that stage yet. When you are diagnosed, it comes as a surprise and you don't know anything about CML. Gleevec became the drug of choice until some of us were either intolerant or unresponsive. So the search was on for more drugs that we could tolerate. > I would like to say to all newcomers, to work hard at fighting the disease by arming yourself with knowledge, Find a doctor you are comfortable with and don't give up. We all have good days and bad days and our results can sometimes be baffling, leading us to think we are loosing our remission or something is amiss. We call those blips on the radar screen. Our counts can change due to an infection, or even the drugs used to treat the infection. Be wary, but not alarmed, it happens to us all. We need each other, because people on the ouside world don't know anything about CML and they don't understand what is happening to us. we didn't learn everything overnight and we continue to learn. We have challenges, but we meet them head on. No matter what your problem is, someone in the group has experienced it and will be willing to give you the benefit of their experience. Take heart, science is gaining and breaking new ground all of the time. For all the drugs we do hear about, there are dozens that are still in the experimental stage where they use mice. In the investigational stage, they use humans in Stages, I, II & III before it is presented to the FDA for approval. Then we hear the trumpets blaring to herald the new drug. One of them will be the cure. > Be happy and kind to everyone you meet and you will find that there are worse things to have than CML, because it is now considered a chronic disease to be managed like diabetes. > Blessings and best wishes, > Lottie (the old lady) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2009 Report Share Posted January 13, 2009 Five years ago today I was diagnosed with cml. I hated Jan. 13. I thought I'd never see another one. When the first or second anniversary came around I'd get depressed thinking about the nightmare of that day. Today I almost forgot about it! I've been on Tasigna since June and feel great. I need to remind myself that I have a disease. I'm going to the dr. tomorrow for my pcr test. I feel pretty good about it. I've been pcru the last two times. I liked it when Zavie mentioned that a cure is coming in a recent post. I hope he's right and that all of us are here to celebrate it! Things are so much better than I thought they'd be. My life is good and I feel great. A cure would be the " icing on the cake " ! I can now feel that it's a " happy anniversary " for the first time. in NY **************A Good Credit Score is 700 or Above. See yours in just 2 easy steps! (http://pr.atwola.com/promoclk/100000075x1215855013x1201028747/aol?redir=http://\ www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De cemailfooterNO62) Quote Link to comment Share on other sites More sharing options...
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