Guest guest Posted August 18, 2008 Report Share Posted August 18, 2008 Hi Bobby, I'm sorry you've been feeling so bad. I wish there was something they could give you to counteract the side effects that the infusion gives you. Usually when it comes to interrupting treatment, they do that when the ANC goes below 1.0 so you're well above that number with 1.8. Your Hgb is a bit low though, have you ever had Procrit or talked about it? Every place is different but it seems many of them will give Procrit when the Hgb goes below 10. Hope you feel better SOON, Tracey > > Hi Everyone, wow, this was not a good infusion week. I asked them not to infuse me due to vertigo, but they insisted, and have I ever been sick. The drug makes me a bit unsure-footed, if that's a word. Not all the time, but this time definitely, and I think it had more to do with the vertigo than the drug. And the numb tongue does not want to go away this time, it is just now starting to wear off. Only this time the inside of my mouth seemed numb, or coated, weird, and definitely not conducive to eating. I was even too dizzy to do my " dizzy " exercises. I finally did them a few hours ago and am feeling better. I think maybe next week I will be more firm about not doing the infusion if I still have vertigo. > In the mean time, my labs are all pretty good :wbc - 3.1; hgb - 9.5; pltl - 175, But now that I look at the rest, the ANC is only 1.8, and I was under the impression they should not infuse under 2.0???????? 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) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2008 Report Share Posted August 18, 2008 Hi Traacey, I got two shots of Aranesp the week before , so I should be getting two more this week. And for some reason, with xl228, they want the anc to be 2 or better, I am surprised they infused me this week at all. If I am still dizzy, which I still am at this point, I am going to be very firm on saying NO to the infusion. 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) From: Tracey <traceyincanada@...> Subject: [ ] Re: XL228 Date: Monday, August 18, 2008, 8:07 AM Hi Bobby, I'm sorry you've been feeling so bad. I wish there was something they could give you to counteract the side effects that the infusion gives you. Usually when it comes to interrupting treatment, they do that when the ANC goes below 1.0 so you're well above that number with 1.8. Your Hgb is a bit low though, have you ever had Procrit or talked about it? Every place is different but it seems many of them will give Procrit when the Hgb goes below 10. Hope you feel better SOON, Tracey > > Hi Everyone, wow, this was not a good infusion week. I asked them not to infuse me due to vertigo, but they insisted, and have I ever been sick. The drug makes me a bit unsure-footed, if that's a word. Not all the time, but this time definitely, and I think it had more to do with the vertigo than the drug. And the numb tongue does not want to go away this time, it is just now starting to wear off. Only this time the inside of my mouth seemed numb, or coated, weird, and definitely not conducive to eating. I was even too dizzy to do my " dizzy " exercises. I finally did them a few hours ago and am feeling better. I think maybe next week I will be more firm about not doing the infusion if I still have vertigo. > In the mean time, my labs are all pretty good :wbc - 3.1; hgb - 9.5; pltl - 175, But now that I look at the rest, the ANC is only 1.8, and I was under the impression they should not infuse under 2.0???????? 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) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2008 Report Share Posted October 1, 2008 HI FOLKS, IT WOULD APPEAR THE XL228 DRUG IS WORKING WELL FOR ME. I DID NOT HAVE TO GO FOR AN INFUSION LAST WEEK DUE TO LOW LABS AND THIS WEEK THEY ARE LOWER, SO AGAIN, I DO NOT HAVE TO GO. I JUST TALKED TO MY TRIAL NURSE AND ASKED HER WHAT ABOUT NEXT WEEK,IF THEY ARE STILL LOW? I THOUGHT I COULD NOT MISS 3 WEEKS IN A ROW AND STILL BE IN THE TRIAL, DON'T KNOW WHERE I GOT THAT IDEA FROM. SHE SAID,NO, I WON'T GET INFUSED IF THEY ARE LOW, 3RD WEEK OR NOT. MY LABS THIS WEEK ARE WBC - 2.00, HGB - 9.4, PLT - 107, ANC .8. DOWN FROM LAST WEEK. I FEEL GREAT BUT SHOULD MOST LIKELY BE GETTING ARANESP BEFORE I NEED A TRANSFUSION. ANYWAY, I LIKE THIS BREAK FROM THE TRAVEL AND THE INFUSION, LIFE IS GOOD, 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2008 Report Share Posted October 2, 2008 Hi Bobby, Sometimes it's good to get a break. Just hang in there; it will get better. I just got 2 pints of blood yesterday, and after worrying over it and all, I find that it wasn't that bad after all. My hemg was 7.4. Now I've got my rosy cheeks back hehe. I don't know muchy about XL228. Is this something new? Blessings, Jeanie<3 In a message dated 10/1/2008 10:10:30 A.M. Pacific Daylight Time, rcd1929@... writes: HI FOLKS, IT WOULD APPEAR THE XL228 DRUG IS WORKING WELL FOR ME. I DID NOT HAVE TO GO FOR AN INFUSION LAST WEEK DUE TO LOW LABS AND THIS WEEK THEY ARE LOWER, SO AGAIN, I DO NOT HAVE TO GO. I JUST TALKED TO MY TRIAL NURSE AND ASKED HER WHAT ABOUT NEXT WEEK,IF THEY ARE STILL LOW? I THOUGHT I COULD NOT MISS 3 WEEKS IN A ROW AND STILL BE IN THE TRIAL, DON'T KNOW WHERE I GOT THAT IDEA FROM. SHE SAID,NO, I WON'T GET INFUSED IF THEY ARE LOW, 3RD WEEK OR NOT. MY LABS THIS WEEK ARE WBC - 2.00, HGB - 9.4, PLT - 107, ANC .8. DOWN FROM LAST WEEK. I FEEL GREAT BUT SHOULD MOST LIKELY BE GETTING ARANESP BEFORE I NEED A TRANSFUSION. ANYWAY, I LIKE THIS BREAK FROM THE TRAVEL AND THE INFUSION, LIFE IS GOOD, BOBBY **************Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Hi Jeanie, XL228 is about a year old, a little less. I know my buddy Len Paschal moved to Ann Arbor a year ago to be in it, and i got in it in May of this year. it is an infusion, depending on the labs, once a week. I missed last week and this week because of low labs, and don't mind if I miss next week. But I really have no side effects to speak of. No bone and muscle aches, no headaches, diarrhea, edema, rash etc. And I got back into remission after only 2 weeks, have been CCR since. So, aside from the quirky effect of a numb tongue, I am fine with it. Also HGB is a bit low, but usually Aranesp takes care of it. If not, it's transfusion time, and as you now know, that is no biggy. 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) From: ICANDOALLTTC@... <ICANDOALLTTC@...> Subject: Re: [ ] XL228 Date: Thursday, October 2, 2008, 5:46 PM Hi Bobby, Sometimes it's good to get a break. Just hang in there; it will get better. I just got 2 pints of blood yesterday, and after worrying over it and all, I find that it wasn't that bad after all. My hemg was 7.4. Now I've got my rosy cheeks back hehe. I don't know muchy about XL228. Is this something new? Blessings, Jeanie<3 In a message dated 10/1/2008 10:10:30 A.M. Pacific Daylight Time, rcd1929sbcglobal (DOT) net writes: HI FOLKS, IT WOULD APPEAR THE XL228 DRUG IS WORKING WELL FOR ME. I DID NOT HAVE TO GO FOR AN INFUSION LAST WEEK DUE TO LOW LABS AND THIS WEEK THEY ARE LOWER, SO AGAIN, I DO NOT HAVE TO GO. I JUST TALKED TO MY TRIAL NURSE AND ASKED HER WHAT ABOUT NEXT WEEK,IF THEY ARE STILL LOW? I THOUGHT I COULD NOT MISS 3 WEEKS IN A ROW AND STILL BE IN THE TRIAL, DON'T KNOW WHERE I GOT THAT IDEA FROM. SHE SAID,NO, I WON'T GET INFUSED IF THEY ARE LOW, 3RD WEEK OR NOT. MY LABS THIS WEEK ARE WBC - 2.00, HGB - 9.4, PLT - 107, ANC .8. DOWN FROM LAST WEEK. I FEEL GREAT BUT SHOULD MOST LIKELY BE GETTING ARANESP BEFORE I NEED A TRANSFUSION. ANYWAY, I LIKE THIS BREAK FROM THE TRAVEL AND THE INFUSION, LIFE IS GOOD, BOBBY ************ **Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Hi Bobby, I got a 2week break from HHT last cycle and it was nice. My platelets are low now and chances are I won't be restarting on schedule again, but that's ok. I get a transfusion tomorrow, my hgb is 8.0. You're right - not a big deal. It sure beats being tired all the time. Way to go on CCR!!!!! Great news. God Bless, Jackie From: ICANDOALLTTC@ aol.com <ICANDOALLTTC@ aol.com> Subject: Re: [ ] XL228 groups (DOT) com Date: Thursday, October 2, 2008, 5:46 PM Hi Bobby, Sometimes it's good to get a break. Just hang in there; it will get better. I just got 2 pints of blood yesterday, and after worrying over it and all, I find that it wasn't that bad after all. My hemg was 7.4. Now I've got my rosy cheeks back hehe. I don't know muchy about XL228. Is this something new? Blessings, Jeanie<3 In a message dated 10/1/2008 10:10:30 A.M. Pacific Daylight Time, rcd1929sbcglobal (DOT) net writes: HI FOLKS, IT WOULD APPEAR THE XL228 DRUG IS WORKING WELL FOR ME. I DID NOT HAVE TO GO FOR AN INFUSION LAST WEEK DUE TO LOW LABS AND THIS WEEK THEY ARE LOWER, SO AGAIN, I DO NOT HAVE TO GO. I JUST TALKED TO MY TRIAL NURSE AND ASKED HER WHAT ABOUT NEXT WEEK,IF THEY ARE STILL LOW? I THOUGHT I COULD NOT MISS 3 WEEKS IN A ROW AND STILL BE IN THE TRIAL, DON'T KNOW WHERE I GOT THAT IDEA FROM. SHE SAID,NO, I WON'T GET INFUSED IF THEY ARE LOW, 3RD WEEK OR NOT. MY LABS THIS WEEK ARE WBC - 2.00, HGB - 9.4, PLT - 107, ANC .8. DOWN FROM LAST WEEK. I FEEL GREAT BUT SHOULD MOST LIKELY BE GETTING ARANESP BEFORE I NEED A TRANSFUSION. ANYWAY, I LIKE THIS BREAK FROM THE TRAVEL AND THE INFUSION, LIFE IS GOOD, BOBBY ************ **Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 > > From: ROBERTA DOYLE rcd1929@... > Subject: Re: [ ] XL228 > > Date: Thursday, October 2, 2008, 7:08 PM > > > > > > > Hi Jeanie, XL228 is about a year old, a little less. I know my buddy Len Paschal moved to Ann Arbor a year ago to be in it, and i got in it in May of this year. it is an infusion, depending on the labs, once a week. I missed last week and this week because of low labs, and don't mind if I miss next week. But I really have no side effects to speak of. No bone and muscle aches, no headaches, diarrhea, edema, rash etc. And I got back into remission after only 2 weeks, have been CCR since. So, aside from the quirky effect of a numb tongue, I am fine with it. Also HGB is a bit low, but usually Aranesp takes care of it. If not, it's transfusion time, and as you now know, that is no biggy. 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) > > > --- On Thu, 10/2/08, ICANDOALLTTC@ aol.com <ICANDOALLTTC@ aol.com> wrote: > > From: ICANDOALLTTC@ aol.com <ICANDOALLTTC@ aol.com> > Subject: Re: [ ] XL228 > groups (DOT) com > Date: Thursday, October 2, 2008, 5:46 PM > > Hi Bobby, > Sometimes it's good to get a break. > Just hang in there; it will get better. > I just got 2 pints of blood yesterday, and after worrying over it and all, I > find that it wasn't that bad after all. > My hemg was 7.4. Now I've got my rosy cheeks back hehe. > I don't know muchy about XL228. > Is this something new? > Blessings, > Jeanie<3 > In a message dated 10/1/2008 10:10:30 A.M. Pacific Daylight Time, > rcd1929sbcglobal (DOT) net writes: > > HI FOLKS, IT WOULD APPEAR THE XL228 DRUG IS WORKING WELL FOR ME. I DID NOT > HAVE TO GO FOR AN INFUSION LAST WEEK DUE TO LOW LABS AND THIS WEEK THEY ARE > LOWER, SO AGAIN, I DO NOT HAVE TO GO. I JUST TALKED TO MY TRIAL NURSE AND > ASKED HER WHAT ABOUT NEXT WEEK,IF THEY ARE STILL LOW? I THOUGHT I COULD NOT > MISS 3 WEEKS IN A ROW AND STILL BE IN THE TRIAL, DON'T KNOW WHERE I GOT THAT > IDEA FROM. SHE SAID,NO, I WON'T GET INFUSED IF THEY ARE LOW, 3RD WEEK OR NOT. > MY LABS THIS WEEK ARE WBC - 2.00, HGB - 9.4, PLT - 107, ANC .8. DOWN FROM > LAST WEEK. I FEEL GREAT BUT SHOULD MOST LIKELY BE GETTING ARANESP BEFORE I > NEED A TRANSFUSION. > ANYWAY, I LIKE THIS BREAK FROM THE TRAVEL AND THE INFUSION, LIFE IS GOOD, > BOBBY > > ************ **Looking for simple solutions to your real-life financial > challenges? Check out WalletPop for the latest news and information, tips and > calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Jackie I hope the transfusion works for you and that the break gives you some much deserved good rest. Keep fighting for the downward trend in the PCR.... and we keep hoping and praying for you. I am off to an in-service today for teachers. I am taking things to read and do because they often are a boring time. Be well dear friend, and keep the faith. Love Barb > > From: ROBERTA DOYLE <rcd1929@...> > Subject: Re: [ ] XL228 > > Date: Thursday, October 2, 2008, 7:08 PM > > > > > > > Hi Jeanie, XL228 is about a year old, a little less. I know my buddy Len Paschal moved to Ann Arbor a year ago to be in it, and i got in it in May of this year. it is an infusion, depending on the labs, once a week. I missed last week and this week because of low labs, and don't mind if I miss next week. But I really have no side effects to speak of. No bone and muscle aches, no headaches, diarrhea, edema, rash etc. And I got back into remission after only 2 weeks, have been CCR since. So, aside from the quirky effect of a numb tongue, I am fine with it. Also HGB is a bit low, but usually Aranesp takes care of it. If not, it's transfusion time, and as you now know, that is no biggy. 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) > > > --- On Thu, 10/2/08, ICANDOALLTTC@ aol.com <ICANDOALLTTC@ aol.com> wrote: > > From: ICANDOALLTTC@ aol.com <ICANDOALLTTC@ aol.com> > Subject: Re: [ ] XL228 > groups (DOT) com > Date: Thursday, October 2, 2008, 5:46 PM > > Hi Bobby, > Sometimes it's good to get a break. > Just hang in there; it will get better. > I just got 2 pints of blood yesterday, and after worrying over it and all, I > find that it wasn't that bad after all. > My hemg was 7.4. Now I've got my rosy cheeks back hehe. > I don't know muchy about XL228. > Is this something new? > Blessings, > Jeanie<3 > In a message dated 10/1/2008 10:10:30 A.M. Pacific Daylight Time, > rcd1929sbcglobal (DOT) net writes: > > HI FOLKS, IT WOULD APPEAR THE XL228 DRUG IS WORKING WELL FOR ME. I DID NOT > HAVE TO GO FOR AN INFUSION LAST WEEK DUE TO LOW LABS AND THIS WEEK THEY ARE > LOWER, SO AGAIN, I DO NOT HAVE TO GO. I JUST TALKED TO MY TRIAL NURSE AND > ASKED HER WHAT ABOUT NEXT WEEK,IF THEY ARE STILL LOW? I THOUGHT I COULD NOT > MISS 3 WEEKS IN A ROW AND STILL BE IN THE TRIAL, DON'T KNOW WHERE I GOT THAT > IDEA FROM. SHE SAID,NO, I WON'T GET INFUSED IF THEY ARE LOW, 3RD WEEK OR NOT. > MY LABS THIS WEEK ARE WBC - 2.00, HGB - 9.4, PLT - 107, ANC .8. DOWN FROM > LAST WEEK. I FEEL GREAT BUT SHOULD MOST LIKELY BE GETTING ARANESP BEFORE I > NEED A TRANSFUSION. > ANYWAY, I LIKE THIS BREAK FROM THE TRAVEL AND THE INFUSION, LIFE IS GOOD, > BOBBY > > ************ **Looking for simple solutions to your real-life financial > challenges? Check out WalletPop for the latest news and information, tips and > calculators. (http://www.walletpo p.com/?NCID= emlcntuswall0000 0001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2008 Report Share Posted October 3, 2008 Hi Jackie, I just got my transfusion; been home a day now. I'm still tired but the transfusion wasn't so bad. It was my first one, so I was a little scared. They had trouble finding my vein for the iv so I'm black and blue from that, and the site they put the needle in swollen, but that's just me. My blood is almost back to normal; so the doctor said. I'm on my 11th day of Tasigna. Good luck on your transfusion. Blessings, Jeanie<3 In a message dated 10/3/2008 5:35:28 A.M. Pacific Daylight Time, barbarastanley@... writes: Hi Bobby, > I got a 2week break from HHT last cycle and it was nice. My platelets are low now and chances are I won't be restarting on schedule again, but that's ok. I get a transfusion tomorrow, my hgb is 8.0. You're right - not a big deal. It sure beats being tired all the time. > Way to go on CCR!!!!! Great news. > God Bless, Jackie **************New MapQuest Local shows what's happening at your destination. Dining, Movies, Events, News & more. Try it out! (http://local.mapquest.com/?ncid=emlcntnew00000001) Quote Link to comment Share on other sites More sharing options...
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