Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 You're our hero, Bobby. From: rcd1929@... Date: Wed, 25 Mar 2009 12:59:13 -0700 Subject: [ ] Ariad Trial Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Bobby I wish you all the luck with the Ariad trial and i hope it will be easy for you,looking forward to your posts. Esther - In , ROBERTA DOYLE <rcd1929@...> wrote: > > Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. > That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 whooo Hooo congrats Bobby. Keep us posted- we are pulling for you. Chi From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] Ariad Trial " " < > Date: Wednesday, March 25, 2009, 12:59 PM Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Good Luck Bobby. Give em Hell. Eva From: china neal Sent: Wednesday, March 25, 2009 6:43 PM Subject: Re: [ ] Ariad Trial whooo Hooo congrats Bobby. Keep us posted- we are pulling for you. Chi From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] Ariad Trial " " < > Date: Wednesday, March 25, 2009, 12:59 PM Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Hey Bobby, I was really hoping that my hubby and I would be able to meet you in Ann Arbor for my May 6th appointment!! Maybe as it gets closer we'll see if your schedule changed at all. I think we are planning on spending a little more time in the city looking around, as it will hopefully be warm enough to wander the streets. Thanks for paving the way! Tammy _____ From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Wednesday, March 25, 2009 3:59 PM Subject: [ ] Ariad Trial Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Hi Tammy, we'll make it one of these days, I haven't seen down town yet, and I have been going there since 06. 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 From: Tammy Ferns <tammy@...> Subject: RE: [ ] Ariad Trial Date: Wednesday, March 25, 2009, 9:54 PM Hey Bobby, I was really hoping that my hubby and I would be able to meet you in Ann Arbor for my May 6th appointment! ! Maybe as it gets closer we'll see if your schedule changed at all. I think we are planning on spending a little more time in the city looking around, as it will hopefully be warm enough to wander the streets. Thanks for paving the way! Tammy _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of ROBERTA DOYLE Sent: Wednesday, March 25, 2009 3:59 PM Subject: [ ] Ariad Trial Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Praying for ya! Hope this drug works like a charm for you. Blessings for the journey, Rhonda Sent from my Verizon Wireless BlackBerry [ ] Ariad Trial Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2009 Report Share Posted March 28, 2009 Bobby - This is great news!! I will be praying for you to have a smooth transition to the Ariad drug. You are a strong person and deserve to find the drug that works against cml and gives you qol. God Bless, Jackie S. (I have pictures to post!! Officially a Grandma as of 3/26 at 7:30 pm) From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] Ariad Trial " " < > Date: Wednesday, March 25, 2009, 2:59 PM Hi, I got the call today, I start the Ariad trial on April 13, with tests being done on April 8. I will stay the week of the 13th, for one week, go back on the 20 and 27th and May 8, and have another long week on the 11th. That is, if it agrees with me enough. Thank goodness this is within in driving distance, I spent 4 years flying to Portland , OR every 3-4 months, and 1 1/2 years flying to Houston. I have lived in Portland 2 months at a time, for 3 times, and 3 months in Houston, so having to stay in Ann Arbor, MI for one weeks is child's play. To say nothing of a lot less expensive! Will keep you all posted on my new " adventure " , 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 - Ariad Trial / U. of Mich./ Dr. Talpaz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2009 Report Share Posted June 9, 2009 I will be starting out on 30mg. Today I had a lab draw and ecg for research. Wednesday I will have a MUGA cardiac test instead of an echo (it would be Monday before an opening so they scheduled a MUGA), and a chest exray. The drug isn't here yet! They weren't ready for me as planned but hopefully Wednesday the drug will be here and I can get started. What were the dire reactions? Anything fatal?! haha. I'll keep you posted. Tomorrow I don't have any appts so my parents and I are going to the baseball game at the Minute Maid - Cubs vs Astros. My parents are big Cub fans. It should be a good time. Time for sleep. God Bless, Jackie S. From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] Ariad trial " " < > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Hi Jackie, Your post seemed like a good one to " out " myself on! I've been lurking here for a few months. I am starting the Ariad trial myself next week at UCSF...and I cannot wait! I have my fingers crossed this drug will work for me. Little background, I'm 44yo Female, diagnosed 6/18/08. Was on 400mg Gleevac until March 09, when my counts started rising. Subsequent testing showed the dreaded T315I mutation. I was originally treated at Stanford, and I am still in the midst of a donor search for a BMT there. I went to UCSF for a second opinion and found out about the trial. I figure I have nothing to lose and everything to gain if this works. I'm very comforted from reading about others on this trial and I wish us all well! Beth [ ] Ariad trial " " < > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Hi Beth, I will officially be starting Ariad Monday June 15th. I'm anxious too to see how well we do on this new drug. Let me know how you do. God Bless, Jackie S. From: ROBERTA DOYLE < rcd1929sbcglobal (DOT) net > Subject: [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Hi Beth and Jackie, the very best of good luck for you both on starting the Ariad trial, I hope you have as few problems as I do. 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 From: ROBERTA DOYLE < rcd1929sbcglobal (DOT) net > Subject: [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Thanks Bobby. We'll keep you posted. Jackie From: ROBERTA DOYLE < rcd1929sbcglobal (DOT) net > Subject: [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Good luck and keep us posted! From: ROBERTA DOYLE < rcd1929sbcglobal (DOT) net > Subject: [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Jackie, And I start June 17, almost a year to the day from my diagnosis! [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 11, 2009 Report Share Posted June 11, 2009 Thank you Bobby! Following your story helped give me the courage to try! [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 15, 2009 Report Share Posted June 15, 2009 Hi Beth, I wanted to start last Wednesday, but they told me that I had to start on a Monday because of the 3 days I need to be in the clinic having blood draws. You start on a Wednesday - do they say that's going to be a problem. Just checking - trying to figure out reasoning. Thanks, Jackie S. From: ROBERTA DOYLE < rcd1929sbcglobal (DOT) net > Subject: [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 15, 2009 Report Share Posted June 15, 2009 Hi Girls, Jackie and Beth, you are both in my prayers this week . It's always exciting to start a trial, sort of exploring the unknown. The best of luck to you both, and I hope this drug is as successful as Gleevec is, only more so. Have great week, 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 From: ROBERTA DOYLE < rcd1929sbcglobal (DOT) net > Subject: [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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 June 15, 2009 Report Share Posted June 15, 2009 Interesting. They have not indicated any problem with starting on a Wed...maybe just a difference in when labs are open? Hope you are doing well today, my thoughts are with you! Beth [ ] Ariad trial " " < groups (DOT) com > Date: Monday, June 8, 2009, 6:01 PM 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...
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