Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 Hi, I went to the U.of Mich. to pick up my pills. They have changed a few things, nothing great. for example, eat a light breakfast, wait 2 hours, take the pills and wait 2 more hours to eat. It was wait only 1 hour. I had to sign another paper stating I was made aware that someone had a rash, someone else had to stop the drug because of dire reactions. So far I have none of these. I also only have to go back on a monthly visit now. I asked if and when I would go from 15 mg to 30. When the next person, jackie, would that be you?? takes 30 mg for 28 days, then they will put me on 30. So, here's hoping Jackie, you have no bad reactions, and you like this drug as well as I do. Good luck to anyone on this drug, they do keep a close eye on us. I must have had 4 echo cardiograms, 6 chest X rays, 3 bmb/bma procedures, and I lost count of the ekg's, three blood drawws a week, and I have only been on the drug for 2 months, not even! Blessings, 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) 02/13/09 - XL trial ended due to side effects 04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 Bobby, I got my clinical trial schedule yesterday so I have a good idea what to expet now. I'm actually going to be in the Deciphera trial with hopefully as promising results as the Ariad. It too works with the T315i mutation, so hopefully will have good results. I start Tuesday with my screening day. Thanks! ________________________________ From: ROBERTA DOYLE <rcd1929@...> Sent: Sun, February 7, 2010 8:47:38 PM Subject: Re: [ ] Ariad Trial  DO YOU HAVE A FAX? I CAN FAX YOU MY CALENDER FOR THE FIRST COUPLE OF WEEKS OF THE TRIAL AND YOU WILL KNOW EXACTLY WHAT TO EXPECT. IF NOT, I WILL JUST TYPE IT OUT FOR YOU. 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: [ ] Ariad Trial groups (DOT) com Date: Sunday, February 7, 2010, 9:56 AM  On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years but recently went on Sprycel which was not effective. Any others on this trial to offer support and information? Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 Well, good luck, and keep us all posted. I know very little about this new drug, I hope it is as good as Ariad, with NO side effects. 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: [ ] Ariad Trial groups (DOT) com Date: Sunday, February 7, 2010, 9:56 AM  On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years but recently went on Sprycel which was not effective. Any others on this trial to offer support and information? Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2010 Report Share Posted February 9, 2010 > > Bobby, > I got my clinical trial schedule yesterday so I have a good idea what to expet now. I'm actually going to be in the Deciphera trial with hopefully as promising results as the Ariad. It too works with the T315i mutation, so hopefully will have good results. I start Tuesday with my screening day. Thanks! > ______________________________ Good luck . I know that you will feel really confident working with Dr. Talpaz. Did he happen to say why this drug instead of the Ariad drug? I know he has a lot of trials going there. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Hi , Do you know why they chose the Deciphera trial and not the Ariad trial? I haven't heard of this new drug either. Is it an oral med? You are our pioneer for this one!! Please let us know the details when you can. God's Blessings, Jackie S. ________________________________ From: Linscott <karenlinscott@...> Sent: Tue, February 9, 2010 2:38:11 PM Subject: Re: [ ] Ariad Trial Bobby, I got my clinical trial schedule yesterday so I have a good idea what to expet now. I'm actually going to be in the Deciphera trial with hopefully as promising results as the Ariad. It too works with the T315i mutation, so hopefully will have good results. I start Tuesday with my screening day. Thanks! ____________ _________ _________ __ From: ROBERTA DOYLE <rcd1929sbcglobal (DOT) net> groups (DOT) com Sent: Sun, February 7, 2010 8:47:38 PM Subject: Re: [ ] Ariad Trial DO YOU HAVE A FAX? I CAN FAX YOU MY CALENDER FOR THE FIRST COUPLE OF WEEKS OF THE TRIAL AND YOU WILL KNOW EXACTLY WHAT TO EXPECT. IF NOT, I WILL JUST TYPE IT OUT FOR YOU. 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: [ ] Ariad Trial groups (DOT) com Date: Sunday, February 7, 2010, 9:56 AM On Friday I found out I have the T315i mutation. I met with Dr. Talpaz and will be starting the Ariad trial ASAP. I was dx 8/05 and Gleevec worked for 4 years but recently went on Sprycel which was not effective. Any others on this trial to offer support and information? Thank you! Quote Link to comment Share on other sites More sharing options...
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