Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Hi , Glad to hear that things are going well for you and that you are feeling so good. Having a top notch cml specialist handling your case is always such a relief. We'll look for some good results from you later. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 ,I am glad that y feeling better and can go to exercise. Go figure T Sent from my Verizon Wireless BlackBerry [ ] Deciphera Trial If you remember they discovered I had the T315i mutation beginning of Feb and started the Deciphera trial a couple weeks later. Well, I have 3 weeks under my belt with the Deciphera trial. I wanted to give you all a brief update on my Michigan adventures. First of all, I guess I could've gotten in the Ariad trial, but Dr. Talpaz wanted me in the Deciphera trial. He thought I was the perfect candidate for this drug that targets T315i-so I am trusting he knows best, which I have heard he does. I will have Ariad as a back up. I have minimal side effects, if any. I feel great(Which Dr. Talpaz also predicted). In fact, I was able to go for a short jog yesterday. My blood is " normal " so I'm trying to get back into exercise and enjoyed my time running outside again. I have been flying back and forth. Some friends from church have donated frequent flier miles to our cause, so the trips from Minnesota to Michigan have been just great. It has been a huge financial relief- 12 hour drive or train is my alternative. Jerry Mayfield started the Ariad trial two weeks ago, so I have enjoyed getting to know him (and his wife, ) these last couple weeks. He is so knowledgeable about the CML journey and trials/research- that has been extremely helpful these last couple weeks. We will be there two more weeks together and then our schedules will alternate. I can't tell you how that has helped- the support has been huge for me. That's about it. I go for two more weeks and then I will go every two weeks until the end of June. I will have a bone marrow biopsy in May. The waiting is the hardest, as I'm sure you know. I'm happy to feel good and can enjoy each day with my family, at work and now to get exercising again outside. That is my best emotional wellness medicine. In Hope, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2010 Report Share Posted March 6, 2010 Hi , so happy for you that Deciphera does not have side effects. It is hard to start a new drug, not knowing for sure what will happen. Yes, you have a great source of information in Jerry, when he kept a diary for the BMS (Sprycel) trial, even though we were in it too, we could not wait to read his next entry. /good luck to you, you are in great hands with Dr, Talpaz, I go on Mondays, the 15th being the next, if you're ever going to be there, give a yell, we can meet.  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: karenlinscott <karenlinscott@...> Subject: [ ] Deciphera Trial Date: Friday, March 5, 2010, 8:19 AM  If you remember they discovered I had the T315i mutation beginning of Feb and started the Deciphera trial a couple weeks later. Well, I have 3 weeks under my belt with the Deciphera trial. I wanted to give you all a brief update on my Michigan adventures. First of all, I guess I could've gotten in the Ariad trial, but Dr. Talpaz wanted me in the Deciphera trial. He thought I was the perfect candidate for this drug that targets T315i-so I am trusting he knows best, which I have heard he does. I will have Ariad as a back up. I have minimal side effects, if any. I feel great(Which Dr. Talpaz also predicted). In fact, I was able to go for a short jog yesterday. My blood is " normal " so I'm trying to get back into exercise and enjoyed my time running outside again. I have been flying back and forth. Some friends from church have donated frequent flier miles to our cause, so the trips from Minnesota to Michigan have been just great. It has been a huge financial relief- 12 hour drive or train is my alternative. Jerry Mayfield started the Ariad trial two weeks ago, so I have enjoyed getting to know him (and his wife, ) these last couple weeks. He is so knowledgeable about the CML journey and trials/research- that has been extremely helpful these last couple weeks. We will be there two more weeks together and then our schedules will alternate. I can't tell you how that has helped- the support has been huge for me. That's about it. I go for two more weeks and then I will go every two weeks until the end of June. I will have a bone marrow biopsy in May. The waiting is the hardest, as I'm sure you know. I'm happy to feel good and can enjoy each day with my family, at work and now to get exercising again outside. That is my best emotional wellness medicine. In Hope, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2010 Report Share Posted March 6, 2010 Hi : I have not been on much later to post or read the messages, but it sounds like your doing great with this new trial. Its great to read good news. May you continue to respond and do well. Take Care A > > If you remember they discovered I had the T315i mutation beginning of Feb and started the Deciphera trial a couple weeks later. Well, I have 3 weeks under my belt with the Deciphera trial. I wanted to give you all a brief update on my Michigan adventures. First of all, I guess I could've gotten in the Ariad trial, but Dr. Talpaz wanted me in the Deciphera trial. He thought I was the perfect candidate for this drug that targets T315i-so I am trusting he knows best, which I have heard he does. I will have Ariad as a back up. I have minimal side effects, if any. I feel great(Which Dr. Talpaz also predicted). In fact, I was able to go for a short jog yesterday. My blood is " normal " so I'm trying to get back into exercise and enjoyed my time running outside again. > > I have been flying back and forth. Some friends from church have donated frequent flier miles to our cause, so the trips from Minnesota to Michigan have been just great. It has been a huge financial relief- 12 hour drive or train is my alternative. Jerry Mayfield started the Ariad trial two weeks ago, so I have enjoyed getting to know him (and his wife, ) these last couple weeks. He is so knowledgeable about the CML journey and trials/research- that has been extremely helpful these last couple weeks. We will be there two more weeks together and then our schedules will alternate. I can't tell you how that has helped- the support has been huge for me. > > That's about it. I go for two more weeks and then I will go every two weeks until the end of June. I will have a bone marrow biopsy in May. The waiting is the hardest, as I'm sure you know. I'm happy to feel good and can enjoy each day with my family, at work and now to get exercising again outside. That is my best emotional wellness medicine. > In Hope, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2010 Report Share Posted March 6, 2010 Dear , Glad to hear that things are going well on the Deciphera trial. I would like to say thank you for participating in this clinical trial. It is an important job that you do for all CMLers. I am so very proud that you have undertaken this task and pray that your effort will result in the validation of yet another CML drug for our arsenal. Looking forward to assigning you a number in the Zero Club, Zavie Zavie (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of karenlinscott Sent: March-05-10 8:20 AM Subject: [ ] Deciphera Trial If you remember they discovered I had the T315i mutation beginning of Feb and started the Deciphera trial a couple weeks later. Well, I have 3 weeks under my belt with the Deciphera trial. I wanted to give you all a brief update on my Michigan adventures. First of all, I guess I could've gotten in the Ariad trial, but Dr. Talpaz wanted me in the Deciphera trial. He thought I was the perfect candidate for this drug that targets T315i-so I am trusting he knows best, which I have heard he does. I will have Ariad as a back up. I have minimal side effects, if any. I feel great(Which Dr. Talpaz also predicted). In fact, I was able to go for a short jog yesterday. My blood is " normal " so I'm trying to get back into exercise and enjoyed my time running outside again. I have been flying back and forth. Some friends from church have donated frequent flier miles to our cause, so the trips from Minnesota to Michigan have been just great. It has been a huge financial relief- 12 hour drive or train is my alternative. Jerry Mayfield started the Ariad trial two weeks ago, so I have enjoyed getting to know him (and his wife, ) these last couple weeks. He is so knowledgeable about the CML journey and trials/research- that has been extremely helpful these last couple weeks. We will be there two more weeks together and then our schedules will alternate. I can't tell you how that has helped- the support has been huge for me. That's about it. I go for two more weeks and then I will go every two weeks until the end of June. I will have a bone marrow biopsy in May. The waiting is the hardest, as I'm sure you know. I'm happy to feel good and can enjoy each day with my family, at work and now to get exercising again outside. That is my best emotional wellness medicine. In Hope, Quote Link to comment Share on other sites More sharing options...
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