Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Hi all, had my visit with Dr. Talpaz, all is fine, the labs were great, I was in and out of there by 11:45 am and on my way home. the trial nurse said she would talk to the powers that be to see if I can do labs twice a month, instead of weekly. That's it, take care,. bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Great news Bobby! Congrats. I didn't realize you were still going in for labs weekly! I have been going every two weeks since September... Beth [ ] Ann Arbor  Hi all, had my visit with Dr. Talpaz, all is fine, the labs were great, I was in and out of there by 11:45 am and on my way home. the trial nurse said she would talk to the powers that be to see if I can do labs twice a month, instead of weekly. That's it, take care,. bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 HI BETH, PERHAPS I AM STILL GETTING WEEKLY LABS BECAUSE OF ANEMIA? HOW ARE EVERY ONE ELSES LABS? JACKIE, GEORGE? AND YOU TOO BETH? I HOPE THEY ARE GOOD, BUT I THINK MAYBE THIS DRUG IS GOING TO BE LIKE SPRYCEL, LOWER IS BETTER THAN HIGH, FOR SIDE EFFECTS? I HAD NO PROBLEMS ON 70 MG SPRYCEL, ALTHOUGH IT TOOK 10 MONTHSTO REACH CCR, BUT WHEN THE DOSE GOT UP TO 140 MG, PEOPLE WERE PLAGUED WITH PLEURAL EFFUSION. GOOD LUCK TO ALL, I LOVE THIS DRUG!! BOBBY a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Ann Arbor Date: Tuesday, October 27, 2009, 7:28 AM Great news Bobby! Congrats. I didn't realize you were still going in for labs weekly! I have been going every two weeks since September... Beth [ ] Ann Arbor Hi all, had my visit with Dr. Talpaz, all is fine, the labs were great, I was in and out of there by 11:45 am and on my way home. the trial nurse said she would talk to the powers that be to see if I can do labs twice a month, instead of weekly. That's it, take care,. bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/ 5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Bobby, Good point re the anemia. That would make a difference. My labs are absolutely rock solid normal. I've been having something weird happen for the past couple of weeks, though. Every once in awhile (at least several times a day) I have a short dizzy spell--I get disoriented as to where I am and then it goes away. I've also been having very scratchy, sore eyes (maybe they are related?). Not sure if it is a side effect or if I just have some inner ear issue brewing, but I plan on mentioning it. I also had the flu shot last week and a tetanus booster and I have been feeling kinda yucky ever since. I almost put my head out of my car door while driving today so I could puke, but I talked myself through it. Oh well, it could be worse and I love this drug too! :-) Beth [ ] Ann Arbor  Hi all, had my visit with Dr. Talpaz, all is fine, the labs were great, I was in and out of there by 11:45 am and on my way home. the trial nurse said she would talk to the powers that be to see if I can do labs twice a month, instead of weekly. That's it, take care,. bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/ 5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Beth, could the dizzy spells be related to vertigo? That is also related to the ears. I have cratchy sore eyes too, mainly the corner, but I figured it was due to dry eye, due to cataract surgery two years ago. Maybe I will check that out with my eye guy! I have been anemic for several years, so I know it isn;t the Ariad drug, and about every 5-6 months it's transfusion time, as medicare will no longer pay for Procrit or Aranesp. But it's nothing I can't live with, life is good. Bobby From: bethgalliart@... <bethgalliart@...> Subject: Re: [ ] Ann Arbor Date: Tuesday, October 27, 2009, 3:20 PM Bobby, Good point re the anemia. That would make a difference. My labs are absolutely rock solid normal. I've been having something weird happen for the past couple of weeks, though. Every once in awhile (at least several times a day) I have a short dizzy spell--I get disoriented as to where I am and then it goes away. I've also been having very scratchy, sore eyes (maybe they are related?). Not sure if it is a side effect or if I just have some inner ear issue brewing, but I plan on mentioning it. I also had the flu shot last week and a tetanus booster and I have been feeling kinda yucky ever since. I almost put my head out of my car door while driving today so I could puke, but I talked myself through it. Oh well, it could be worse and I love this drug too! :-) Beth [ ] Ann Arbor Hi all, had my visit with Dr. Talpaz, all is fine, the labs were great, I was in and out of there by 11:45 am and on my way home. the trial nurse said she would talk to the powers that be to see if I can do labs twice a month, instead of weekly. That's it, take care,. bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/ 5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2009 Report Share Posted October 27, 2009 Bobby, Could be. I've never had vertigo, so that would be something new and " exciting " ! The eye thing also makes it hard to actually see the computer screen...sometimes it is like looking through a lattice fence. Definitely weird. Like you said, it is nothing I can't live with! Beth [ ] Ann Arbor  Hi all, had my visit with Dr. Talpaz, all is fine, the labs were great, I was in and out of there by 11:45 am and on my way home. the trial nurse said she would talk to the powers that be to see if I can do labs twice a month, instead of weekly. That's it, take care,. bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/ 5 years 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 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 Quote Link to comment Share on other sites More sharing options...
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