Guest guest Posted February 10, 2010 Report Share Posted February 10, 2010 Dear , We have another pioneer in our midst. You are starting a new trial, Deciphera, which we will all be watching and waiting to hear your results. Your first clinic day will be quite busy. I wanted to send you my best wishes for the successful trial being introduced, and I know there are a lot of subscribers to this list who will be as interested as well. I hope you will keep us posted as to your progress and how you are handling it with good results. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Dearest Lottie, I just wrote " Lottie @ MDACC " on September 13 on my calendar. We wish you the very best in qualifying for the Ariad trial. I salute you, Lottie, Bobby, , and all the other CML warriors who have been in trials. Sending hugs to you this Labor Day. JoAnn > > As some of you may already know, I will be leaving for MDACC on Sept. 13 to try out for the Ariad trial. I just hope I qualify and able to meet the requirements. We have gotten such good reports back from our membership who haved been willing to share that part of their lives with us, that I feel strongly that is the best option for me at this time. We all have to make choices that are difficult in life and this was a time where I had to deliberate and weigh which trial was best for me. I was offered the DCC 2036 the day before, but my heart told me to follow the Ariad trial. I was willing to wait for it, but I didn't think it would so soon from earlier reports about the starting date. (They like to keep you in the dark). For those of you who have never been in a trial, it is like a rite of passage. It's almost like auditioning for a part, only your health is at play instead of your talent. There is the initial x-ray, then the blood work every few hours, ECGs every hour and then you wait for 4 hours and do it again. I remember standing in the middle of the doctor's office and the crew that works with him were all there as they watched me down my first dose of the drug. > > Does anyone remember their experience they would like to share? I know Bobby has lots and lots of memories, she has been in more trials than me. She is always one step ahead of me and 1 year more CML birthdays, right Bobby? I think she has earned a blue ribbon for having traveled the most to get into a trial. The fact that she earned so many frequent flyer miles in her quest was daunting enough, but she did it in a wheel chair, traveling alone many times. Now that is a gutsy lady. Not only that, she raises money for good causes and gives of her time and talents very generously and she is always ready to help our newbes. Salut, Bobby. > > Carpe diem, > Lottie Duthu > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2010 Report Share Posted September 7, 2010 Dear Lottie, I wonder if you are taking my spot in the trial? I turned in my leftover drug last week. You will love that drug. I had no side effects other than constapation. I will be praying for you. This Friday I will be admitted to begin the transplant journey. We both are starting a new journey, again. God Bless, Jackie > As some of you may already know, I will be leaving for MDACC on Sept. 13 to try out for the Ariad trial. I just hope I qualify and able to meet the requirements. We have gotten such good reports back from our membership who haved been willing to share that part of their lives with us, that I feel strongly that is the best option for me at this time. We all have to make choices that are difficult in life and this was a time where I had to deliberate and weigh which trial was best for me. I was offered the DCC 2036 the day before, but my heart told me to follow the Ariad trial. I was willing to wait for it, but I didn't think it would so soon from earlier reports about the starting date. (They like to keep you in the dark). For those of you who have never been in a trial, it is like a rite of passage. It's almost like auditioning for a part, only your health is at play instead of your talent. There is the initial x-ray, then the blood work every few hours, ECGs e very hour and then you wait for 4 hours and do it again. I remember standing in the middle of the doctor's office and the crew that works with him were all there as they watched me down my first dose of the drug. > > Does anyone remember their experience they would like to share? I know Bobby has lots and lots of memories, she has been in more trials than me. She is always one step ahead of me and 1 year more CML birthdays, right Bobby? I think she has earned a blue ribbon for having traveled the most to get into a trial. The fact that she earned so many frequent flyer miles in her quest was daunting enough, but she did it in a wheel chair, traveling alone many times. Now that is a gutsy lady. Not only that, she raises money for good causes and gives of her time and talents very generously and she is always ready to help our newbes. Salut, Bobby. > > Carpe diem, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 You are the coolest. And the bravest. You and Bobbie are my mentors, my role models, my inspirations in dealing with CML -- riding out onto the frontier with a YEE-HA! I've been privileged to follow on the path you built. On Sun, Sep 5, 2010 at 3:44 PM, Lottie Duthu <lotajam@...> wrote: > > > As some of you may already know, I will be leaving for MDACC on Sept. 13 to > try out for the Ariad trial. I just hope I qualify and able to meet the > requirements. We have gotten such good reports back from our membership who > haved been willing to share that part of their lives with us, that I feel > strongly that is the best option for me at this time. We all have to make > choices that are difficult in life and this was a time where I had to > deliberate and weigh which trial was best for me. I was offered the DCC 2036 > the day before, but my heart told me to follow the Ariad trial. I was > willing to wait for it, but I didn't think it would so soon from earlier > reports about the starting date. (They like to keep you in the dark). For > those of you who have never been in a trial, it is like a rite of passage. > It's almost like auditioning for a part, only your health is at play instead > of your talent. There is the initial x-ray, then the blood work every few > hours, ECGs every hour and then you wait for 4 hours and do it again. I > remember standing in the middle of the doctor's office and the crew that > works with him were all there as they watched me down my first dose of the > drug. > > Does anyone remember their experience they would like to share? I know > Bobby has lots and lots of memories, she has been in more trials than me. > She is always one step ahead of me and 1 year more CML birthdays, right > Bobby? I think she has earned a blue ribbon for having traveled the most to > get into a trial. The fact that she earned so many frequent flyer miles in > her quest was daunting enough, but she did it in a wheel chair, traveling > alone many times. Now that is a gutsy lady. Not only that, she raises money > for good causes and gives of her time and talents very generously and she is > always ready to help our newbes. Salut, Bobby. > > Carpe diem, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 Lottie I send love and blessings from England... I feel I am getting to know you all via this support site and thank you SO much for continuing to take the time and trouble for we new ones to the club. I am having a bit of a rough ride at the moment having been on 400mg Gleevec since last november. Awful surging pressure in my ears and neck, temperatures and complete fatigue and breathlessness. Do you know what I am talking about anyone? What happened to you? Will I ever feel vaguely well again? I used to be so full of energy! Good luck with the trial Lottie and thank you for being you! Love Beth > > > As some of you may already know, I will be leaving for MDACC on Sept. 13 to > try out for the Ariad trial. I just hope I qualify and able to meet the > requirements. We have gotten such good reports back from our membership who > haved been willing to share that part of their lives with us, that I feel > strongly that is the best option for me at this time. We all have to make > choices that are difficult in life and this was a time where I had to > deliberate and weigh which trial was best for me. I was offered the DCC 2036 > the day before, but my heart told me to follow the Ariad trial. I was > willing to wait for it, but I didn't think it would so soon from earlier > reports about the starting date. (They like to keep you in the dark). For > those of you who have never been in a trial, it is like a rite of passage. > It's almost like auditioning for a part, only your health is at play instead > of your talent. There is the initial x-ray, then the blood work every few > hours, ECGs every hour and then you wait for 4 hours and do it again. I > remember standing in the middle of the doctor's office and the crew that > works with him were all there as they watched me down my first dose of the > drug. > > Does anyone remember their experience they would like to share? I know > Bobby has lots and lots of memories, she has been in more trials than me. > She is always one step ahead of me and 1 year more CML birthdays, right > Bobby? I think she has earned a blue ribbon for having traveled the most to > get into a trial. The fact that she earned so many frequent flyer miles in > her quest was daunting enough, but she did it in a wheel chair, traveling > alone many times. Now that is a gutsy lady. Not only that, she raises money > for good causes and gives of her time and talents very generously and she is > always ready to help our newbes. Salut, Bobby. > > Carpe diem, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2010 Report Share Posted September 25, 2010 Hi Lottie, Mr. Sceptic here. The trial for Zileuton is one to test the safety of the drug. The testing they did with mice showed that the combination of the two drugs (Zileuton and Gleevec) works better than a single drug. There is no evidence from their testing on mice that a cure is possible. Why are we so excited that this might be a cure? Zavie From: [mailto: ] On Behalf Of Lottie Duthu Sent: September-24-10 1:09 AM CML Subject: [ ] New trial Thanks Don, for your update, and now everyone will know it came from here first. LOL. This is certainly a novel idea, combining already tested drugs together for another CML trial. Do you know anyone who is interested in it that you inquired of Dr. LI in Worcester. Do they have a name for the trial yet? They have the best seafood houses up there and a company that makes chocolates. I remember the name: Hebert's Chocolate Candies and we went and tried a few samples. Hi to you both, Lottie Quote Link to comment Share on other sites More sharing options...
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