Guest guest Posted July 23, 2009 Report Share Posted July 23, 2009 To everyone who called and wrote, I thank you for your thoughts and prayers. I just wanted to stop in for a brief visit, as back pain prevents me from sitting at my computer for very long. I can see some improvement in my GI condition. Though no doctor has confirmed it, I believe it is side effects from the pain meds, Darvon and Darvon-n. Living with nausea 24/7 is something I never thought I would experience, but it was full blown. I lost 25# in the process and now am living with anoxeria of some sort. Clinic day at MDACC was an all day affair and there was standing room only. There was a gentleman who was being held up against the wall by his daughter, so I called for the nurse to tend to him and he ran and got a wheel chair. I brought one upstairs with me, so I didn't have to stand, but Jimmy and some others did. When I left there was only one patient who was unseen. The BMA went fine, no problem - #47. They are shorthanded in every department because there is a money shortage and they are laying off people. Bobby and the rest of you on the Ariad trial, you will be amused at this. The doctor wants me to get into the Ariad trial. He said it was new and he called the nurse to put my name in for it, totally unaware that I had knowledge of it. I couldn't muffle my laughter and told him I already was in contact with several people who were in it. Anyway, he underestimates the power of support groups. I wish you all the best of luck with it, because I may be joining you soon. LOL. On the other hand, do I really think I want to go through the preliminaries of yet another trial? That's going to be a balancing act. If you would like a " My CML Tracker " , you can go to this website for forms to keep your records in and other information about CML, here is the website to visit: http://www.leukemia-lymphoma.org/attachments/National/br_1201703397.pdf Good to be back and again, many thanks for all your support, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2009 Report Share Posted July 23, 2009 What an ordeal! It's so good to hear from you. Here's hoping you're going to be in the pink soooooon. Fondly, From: lotajam@... Date: Thu, 23 Jul 2009 16:27:47 -0500 Subject: [ ] Back home To everyone who called and wrote, I thank you for your thoughts and prayers. I just wanted to stop in for a brief visit, as back pain prevents me from sitting at my computer for very long. I can see some improvement in my GI condition. Though no doctor has confirmed it, I believe it is side effects from the pain meds, Darvon and Darvon-n. Living with nausea 24/7 is something I never thought I would experience, but it was full blown. I lost 25# in the process and now am living with anoxeria of some sort. Clinic day at MDACC was an all day affair and there was standing room only. There was a gentleman who was being held up against the wall by his daughter, so I called for the nurse to tend to him and he ran and got a wheel chair. I brought one upstairs with me, so I didn't have to stand, but Jimmy and some others did. When I left there was only one patient who was unseen. The BMA went fine, no problem - #47. They are shorthanded in every department because there is a money shortage and they are laying off people. Bobby and the rest of you on the Ariad trial, you will be amused at this. The doctor wants me to get into the Ariad trial. He said it was new and he called the nurse to put my name in for it, totally unaware that I had knowledge of it. I couldn't muffle my laughter and told him I already was in contact with several people who were in it. Anyway, he underestimates the power of support groups. I wish you all the best of luck with it, because I may be joining you soon. LOL. On the other hand, do I really think I want to go through the preliminaries of yet another trial? That's going to be a balancing act. If you would like a " My CML Tracker " , you can go to this website for forms to keep your records in and other information about CML, here is the website to visit: http://www.leukemia-lymphoma.org/attachments/National/br_1201703397.pdf Good to be back and again, many thanks for all your support, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Lottie, Thank you for your update and I'm very sorry you are so uncomfortable! That just sucks. Take good care and I hope you are feeling better soon... That is funny re the Ariad trial. My doctor called me today with some news and to let me know they are actively trying to find patients with the T315I mutation because he knows I'm on the chat boards...lol Good luck with whatever you decide re the trial. Hugs, Beth [ ] Back home  To everyone who called and wrote, I thank you for your thoughts and prayers. I just wanted to stop in for a brief visit, as back pain prevents me from sitting at my computer for very long. I can see some improvement in my GI condition. Though no doctor has confirmed it, I believe it is side effects from the pain meds, Darvon and Darvon-n. Living with nausea 24/7 is something I never thought I would experience, but it was full blown. I lost 25# in the process and now am living with anoxeria of some sort. Clinic day at MDACC was an all day affair and there was standing room only. There was a gentleman who was being held up against the wall by his daughter, so I called for the nurse to tend to him and he ran and got a wheel chair. I brought one upstairs with me, so I didn't have to stand, but Jimmy and some others did. When I left there was only one patient who was unseen. The BMA went fine, no problem - #47. They are shorthanded in every department because there is a money shortage and they are laying off people. Bobby and the rest of you on the Ariad trial, you will be amused at this. The doctor wants me to get into the Ariad trial. He said it was new and he called the nurse to put my name in for it, totally unaware that I had knowledge of it. I couldn't muffle my laughter and told him I already was in contact with several people who were in it. Anyway, he underestimates the power of support groups. I wish you all the best of luck with it, because I may be joining you soon. LOL. On the other hand, do I really think I want to go through the preliminaries of yet another trial? That's going to be a balancing act. If you would like a " My CML Tracker " , you can go to this website for forms to keep your records in and other information about CML, here is the website to visit: http://www.leukemia-lymphoma.org/attachments/National/br_1201703397.pdf Good to be back and again, many thanks for all your support, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Welcome back Lottie! We missed you more than you can imagine. Get lots of rest now and get your strength back so we can hear from you more often. You are in my prayers, dear lady! Blessings, From: Lottie Duthu <lotajam@...> Subject: [ ] Back home " CML " < > Date: Thursday, July 23, 2009, 9:27 PM To everyone who called and wrote, I thank you for your thoughts and prayers.. I just wanted to stop in for a brief visit, as back pain prevents me from sitting at my computer for very long. I can see some improvement in my GI condition. Though no doctor has confirmed it, I believe it is side effects from the pain meds, Darvon and Darvon-n. Living with nausea 24/7 is something I never thought I would experience, but it was full blown. I lost 25# in the process and now am living with anoxeria of some sort. Clinic day at MDACC was an all day affair and there was standing room only. There was a gentleman who was being held up against the wall by his daughter, so I called for the nurse to tend to him and he ran and got a wheel chair. I brought one upstairs with me, so I didn't have to stand, but Jimmy and some others did. When I left there was only one patient who was unseen. The BMA went fine, no problem - #47. They are shorthanded in every department because there is a money shortage and they are laying off people. Bobby and the rest of you on the Ariad trial, you will be amused at this. The doctor wants me to get into the Ariad trial. He said it was new and he called the nurse to put my name in for it, totally unaware that I had knowledge of it. I couldn't muffle my laughter and told him I already was in contact with several people who were in it. Anyway, he underestimates the power of support groups. I wish you all the best of luck with it, because I may be joining you soon. LOL. On the other hand, do I really think I want to go through the preliminaries of yet another trial? That's going to be a balancing act. If you would like a " My CML Tracker " , you can go to this website for forms to keep your records in and other information about CML, here is the website to visit: http://www.leukemia -lymphoma. org/attachments/ National/ br_1201703397. pdf Good to be back and again, many thanks for all your support, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 From: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Back home Date: Thursday, July 23, 2009, 9:00 PM Lottie, Thank you for your update and I'm very sorry you are so uncomfortable! That just sucks. Take good care and I hope you are feeling better soon... That is funny re the Ariad trial. My doctor called me today with some news and to let me know they are actively trying to find patients with the T315I mutation because he knows I'm on the chat boards...lol Good luck with whatever you decide re the trial. Hugs, Beth [ ] Back home To everyone who called and wrote, I thank you for your thoughts and prayers. I just wanted to stop in for a brief visit, as back pain prevents me from sitting at my computer for very long. I can see some improvement in my GI condition. Though no doctor has confirmed it, I believe it is side effects from the pain meds, Darvon and Darvon-n. Living with nausea 24/7 is something I never thought I would experience, but it was full blown. I lost 25# in the process and now am living with anoxeria of some sort. Clinic day at MDACC was an all day affair and there was standing room only. There was a gentleman who was being held up against the wall by his daughter, so I called for the nurse to tend to him and he ran and got a wheel chair. I brought one upstairs with me, so I didn't have to stand, but Jimmy and some others did. When I left there was only one patient who was unseen. The BMA went fine, no problem - #47. They are shorthanded in every department because there is a money shortage and they are laying off people. Bobby and the rest of you on the Ariad trial, you will be amused at this. The doctor wants me to get into the Ariad trial. He said it was new and he called the nurse to put my name in for it, totally unaware that I had knowledge of it. I couldn't muffle my laughter and told him I already was in contact with several people who were in it. Anyway, he underestimates the power of support groups. I wish you all the best of luck with it, because I may be joining you soon. LOL. On the other hand, do I really think I want to go through the preliminaries of yet another trial? That's going to be a balancing act. If you would like a " My CML Tracker " , you can go to this website for forms to keep your records in and other information about CML, here is the website to visit: http://www.leukemia -lymphoma. org/attachments/ National/ br_1201703397. pdf Good to be back and again, many thanks for all your support, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 Dear Lottie, I demand that back pain to leave you alone!!!! But it's good to hear from you. When my research nurse was trying to tell me that the bone pain wasn't from the Ariad, I brought to his attention that I knew of two patients that experienced the same pain. He was dumbfounded. He even went to the trial website and found Beth's, Bobby's, and Len's initials. It was great!! I could tell him when they started and where they were in the trial at. We definitely have to be our own advocates. I hope you get feeling better. I will pray for you. God Bless, Jackie S. From: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Back home Date: Thursday, July 23, 2009, 9:00 PM Lottie, Thank you for your update and I'm very sorry you are so uncomfortable! That just sucks. Take good care and I hope you are feeling better soon... That is funny re the Ariad trial. My doctor called me today with some news and to let me know they are actively trying to find patients with the T315I mutation because he knows I'm on the chat boards...lol Good luck with whatever you decide re the trial. Hugs, Beth [ ] Back home To everyone who called and wrote, I thank you for your thoughts and prayers. I just wanted to stop in for a brief visit, as back pain prevents me from sitting at my computer for very long. I can see some improvement in my GI condition. Though no doctor has confirmed it, I believe it is side effects from the pain meds, Darvon and Darvon-n. Living with nausea 24/7 is something I never thought I would experience, but it was full blown. I lost 25# in the process and now am living with anoxeria of some sort. Clinic day at MDACC was an all day affair and there was standing room only. There was a gentleman who was being held up against the wall by his daughter, so I called for the nurse to tend to him and he ran and got a wheel chair. I brought one upstairs with me, so I didn't have to stand, but Jimmy and some others did. When I left there was only one patient who was unseen. The BMA went fine, no problem - #47. They are shorthanded in every department because there is a money shortage and they are laying off people. Bobby and the rest of you on the Ariad trial, you will be amused at this. The doctor wants me to get into the Ariad trial. He said it was new and he called the nurse to put my name in for it, totally unaware that I had knowledge of it. I couldn't muffle my laughter and told him I already was in contact with several people who were in it. Anyway, he underestimates the power of support groups. I wish you all the best of luck with it, because I may be joining you soon. LOL. On the other hand, do I really think I want to go through the preliminaries of yet another trial? That's going to be a balancing act. If you would like a " My CML Tracker " , you can go to this website for forms to keep your records in and other information about CML, here is the website to visit: http://www.leukemia -lymphoma. org/attachments/ National/ br_1201703397. pdf Good to be back and again, many thanks for all your support, Lottie Quote Link to comment Share on other sites More sharing options...
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