Guest guest Posted October 28, 2009 Report Share Posted October 28, 2009 Hi Ladies, Beth, Definitely get those dizzy spells checked out. That sounds scary!! Awesome on the rock solid labs. So that can't be it. Let us know ok? My labs are still low. Platelets ARE up to 52,000, but the wbc is 2.1 and hgb down to 8.7. I'm feeling it!!!! My return appt is Friday. Hopefully the plts will jump another 24,000 so I can restart Ariad. THey have to be 76,000 to restarts. Bobby-It's great to hear you are doing so well. I will follow soon - I just know it. God Bless, Jackie From: ROBERTA DOYLE <rcd1929@...> Subject: Re: [ ] Ann Arbor Date: Tuesday, October 27, 2009, 2:59 PM 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 --- On Tue, 10/27/09, bethgalliart@ comcast.net <bethgalliart@ comcast.net> wrote: From: bethgalliart@ comcast.net <bethgalliart@ comcast.net> Subject: Re: [ ] Ann Arbor groups (DOT) com 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 28, 2009 Report Share Posted October 28, 2009 Jackie, I know you'll get there too, do you have any severe side effects? I am prone to have vertigo. I do not have it now, but when I turn over when I am in bed I get a bit dizzy, it does not last. I hate doing the exercises for it, the Epley maneuvers I think they are called. I only do them as a last resort, as they make you dizzier just doing them! Seems silly, to get over being dizzy by getting dizzier! good luck to you, 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: ROBERTA DOYLE <rcd1929sbcglobal (DOT) net> Subject: Re: [ ] Ann Arbor groups (DOT) com Date: Tuesday, October 27, 2009, 2:59 PM 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 --- On Tue, 10/27/09, bethgalliart@ comcast.net <bethgalliart@ comcast.net> wrote: From: bethgalliart@ comcast.net <bethgalliart@ comcast.net> Subject: Re: [ ] Ann Arbor groups (DOT) com 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 29, 2009 Report Share Posted October 29, 2009 My dad has vertigo and does those exercises too. They would definitely make me dizzy. Hope you get feeling better. God Bless,Jackie From: ROBERTA DOYLE <rcd1929sbcglobal (DOT) net> Subject: Re: [ ] Ann Arbor groups (DOT) com Date: Tuesday, October 27, 2009, 2:59 PM 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 --- On Tue, 10/27/09, bethgalliart@ comcast.net <bethgalliart@ comcast.net> wrote: From: bethgalliart@ comcast.net <bethgalliart@ comcast.net> Subject: Re: [ ] Ann Arbor groups (DOT) com 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...
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