Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Thanks for the update, it sounds like an eventful time. Keep up the good work!!!!!!!!!!!!!!!!!! Matt Florida In a message dated 6/12/2008 4:39:48 P.M. Eastern Daylight Time, rcd1929@... writes: Hi Everyone, boy! what a day yesterday was.When I was waiting to be called in for the infusion I decided to take a Compazine. I also have Ativan (sp). A nurse came by and I asked her which would be better, she said take both, a lot of people do. So I did,. I didn't get infused for about an hour, it takes about 1 1/2 hrs. to finish. I did not throw up, I didn't really feel nauseous. But on the way home, it hit me. I remember very little of the almost 3 hr. drive. I came in the house, at 5, went to bed, got up at nine, had severe diarrhea 3 times, went back to sleep before 10, and slept until 8 . I have felt drugged all day long. My tongue is numb so the taste buds are on the fritz and that is good because I don't want to eat. But I will do one or the other next week, never both. On a happier note I got to visit with my good buddy Len Paschal and hubby Ernie. She is doing well, we had side by side chairs yesterday 3 more doses and she goes up to my dose and I pray it does as well for her as it has done for me. Now I am going to behave myself, no matter who comes into my house with pizza, chocolate covered nuts or even peanut butter suffle! I am sure, no matter what my vascular dr. has to say tomorrow, part of it will be lose weight, do my legs a favor! Blessings to all, love, 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) **************Vote for your city's best dining and nightlife. City's Best 2008. (http://citysbest.aol.com?ncid=aolacg00050000000102) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2008 Report Share Posted June 13, 2008 Bobby- I always hear a smile in your missives even when you are spending too much time in the loo. You lead the way , my friend. Chi --- mtmaynor@... wrote: > > Thanks for the update, it sounds like an eventful > time. > > Keep up the good work!!!!!!!!!!!!!!!!!! > > Matt > Florida > > In a message dated 6/12/2008 4:39:48 P.M. Eastern > Daylight Time, > rcd1929@... writes: > > > > > Hi Everyone, boy! what a day yesterday was.When I > was waiting to be called > in for the infusion I decided to take a Compazine. I > also have Ativan (sp). A > nurse came by and I asked her which would be better, > she said take both, a lot > of people do. So I did,. I didn't get infused for > about an hour, it takes > about 1 1/2 hrs. to finish. I did not throw up, I > didn't really feel nauseous. > But on the way home, it hit me. I remember very > little of the almost 3 hr. > drive. I came in the house, at 5, went to bed, got > up at nine, had severe > diarrhea 3 times, went back to sleep before 10, and > slept until 8 . I have felt > drugged all day long. My tongue is numb so the taste > buds are on the fritz and > that is good because I don't want to eat. But I will > do one or the other > next week, never both. > On a happier note I got to visit with my good buddy > Len Paschal and hubby > Ernie. She is doing well, we had side by side > chairs yesterday 3 more doses and > she goes up to my dose and I pray it does as well > for her as it has done for > me. > Now I am going to behave myself, no matter who > comes into my house with > pizza, chocolate covered nuts or even peanut butter > suffle! I am sure, no matter > what my vascular dr. has to say tomorrow, part of > it will be lose weight, do > my legs a favor! > Blessings to all, love, 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) > > > > > > > > > > **************Vote for your city's best dining and > nightlife. City's Best > 2008. > (http://citysbest.aol.com?ncid=aolacg00050000000102) > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2008 Report Share Posted June 14, 2008 Bobby - This sounds like a drug induced torture? Ha!! What a horrible experience. So sorry you had to go through that! I hope you are able to get past it. I am happy to hear about Len and Ernie. So badly I want to meet people on this list. Maybe someday. I always thought a big CML reunion in Arizona in February would be a really good thing. Don't you? Be well my friend, Barb in AZ > > Hi Everyone, boy! what a day yesterday was.When I was waiting to be called in for the infusion I decided to take a Compazine. I also have Ativan (sp). A nurse came by and I asked her which would be better, she said take both, a lot of people do. So I did,. I didn't get infused for about an hour, it takes about 1 1/2 hrs. to finish. I did not throw up, I didn't really feel nauseous. But on the way home, it hit me. I remember very little of the almost 3 hr. drive. I came in the house, at 5, went to bed, got up at nine, had severe diarrhea 3 times, went back to sleep before 10, and slept until 8 . I have felt drugged all day long. My tongue is numb so the taste buds are on the fritz and that is good because I don't want to eat. But I will do one or the other next week, never both. > On a happier note I got to visit with my good buddy Len Paschal and hubby Ernie. She is doing well, we had side by side chairs yesterday 3 more doses and she goes up to my dose and I pray it does as well for her as it has done for me. > Now I am going to behave myself, no matter who comes into my house with pizza, chocolate covered nuts or even peanut butter suffle! I am sure, no matter what my vascular dr. has to say tomorrow, part of it will be lose weight, do my legs a favor! > Blessings to all, love, 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 June 14, 2008 Report Share Posted June 14, 2008 Hi Barb, it's so funny, I knew I was not in good shape about half way through the infusion., I was sitting next to Len, visiting. Don't remember much after that. Ernie emailed me and said I sure was zonked the last time he saw me, so I guess I really was out of it! But I never did throw up, and that was the reason for the drugs. I have never been to AZ, but have been to CA many times. A reunion ANYwhere is a good idea to me, Arizona, Canada, Florida,just name it, I'll go. Glad to know you are doing so well on Tasigna, blessings, Bobby Barb Stanley <barbarastanley@...> wrote: Bobby - This sounds like a drug induced torture? Ha!! What a horrible experience. So sorry you had to go through that! I hope you are able to get past it. I am happy to hear about Len and Ernie. So badly I want to meet people on this list. Maybe someday. I always thought a big CML reunion in Arizona in February would be a really good thing. Don't you? Be well my friend, Barb in AZ > > Hi Everyone, boy! what a day yesterday was.When I was waiting to be called in for the infusion I decided to take a Compazine. I also have Ativan (sp). A nurse came by and I asked her which would be better, she said take both, a lot of people do. So I did,. I didn't get infused for about an hour, it takes about 1 1/2 hrs. to finish. I did not throw up, I didn't really feel nauseous. But on the way home, it hit me. I remember very little of the almost 3 hr. drive. I came in the house, at 5, went to bed, got up at nine, had severe diarrhea 3 times, went back to sleep before 10, and slept until 8 . I have felt drugged all day long. My tongue is numb so the taste buds are on the fritz and that is good because I don't want to eat. But I will do one or the other next week, never both. > On a happier note I got to visit with my good buddy Len Paschal and hubby Ernie. She is doing well, we had side by side chairs yesterday 3 more doses and she goes up to my dose and I pray it does as well for her as it has done for me. > Now I am going to behave myself, no matter who comes into my house with pizza, chocolate covered nuts or even peanut butter suffle! I am sure, no matter what my vascular dr. has to say tomorrow, part of it will be lose weight, do my legs a favor! > Blessings to all, love, 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 22, 2008 Report Share Posted August 22, 2008 Congratulations Bobby you deserve good news for a change. So sorry about your daughter, know it takes a while to settle down the shingles bless her heart (eye) Anita [ ] Ann Arbor Hi Everyone, I had a good day today at Ann Arbor, did not have to get infused. Of course, there's a bad side to that, my counts were too low, ANC - 1.1, hgb - 9.2, wbc 2.1 plt - 106. I got two shots of Aranesp, and ekg, two blood draws, and said good bye until next week. Also before, I had to get labs done within 24 hr. of infusion, they have changed that to 48 hrs. Now i can get labs done here on Tues, and know if I have to go there or not on Thurs.and they will get them in plenty of time. Dr. T said it looks like I only need this infusion every other week, that sounds good to me. I am zero FISH, and 0.56 pcr, and I am a happy camper. On the other hand, daughter Kelley with the shingles is suffering a full blown case, her left eye is swollen and red and she is in terrible pain. I know nothing of shingles, except she is one miserable gal. Good night to all, have a great weekend, 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 22, 2008 Report Share Posted August 22, 2008 Bobby, I understand what your daughter is going thru. I have had the shingles for the past 3 weeks. It is finally beginning to heal. I am hoping for it to be completely gone by next Tuesday, as I am suppose to go to Washington to see my don and DIL. By the way, mine is from my spine to my abdomen. From: awristen1@... Date: Thu, 21 Aug 2008 20:32:58 -0700 Subject: Re: [ ] Ann Arbor Congratulations Bobby you deserve good news for a change. So sorry about your daughter, know it takes a while to settle down the shingles bless her heart (eye) Anita [ ] Ann Arbor Hi Everyone, I had a good day today at Ann Arbor, did not have to get infused. Of course, there's a bad side to that, my counts were too low, ANC - 1.1, hgb - 9.2, wbc 2.1 plt - 106. I got two shots of Aranesp, and ekg, two blood draws, and said good bye until next week. Also before, I had to get labs done within 24 hr. of infusion, they have changed that to 48 hrs. Now i can get labs done here on Tues, and know if I have to go there or not on Thurs.and they will get them in plenty of time. Dr. T said it looks like I only need this infusion every other week, that sounds good to me. I am zero FISH, and 0.56 pcr, and I am a happy camper. On the other hand, daughter Kelley with the shingles is suffering a full blown case, her left eye is swollen and red and she is in terrible pain. I know nothing of shingles, except she is one miserable gal. Good night to all, have a great weekend, 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 29, 2008 Report Share Posted August 29, 2008 Hi folks, well, my labs were too low to be infused this week, ANC is only 1.1, wbc is 2.0, hgb 10.0 and plt 115. I have already missed last week, this makes 2, I am only allowed 3 misses and it's out of the trial. But on a good note, my qpcr is down to .393, down from .576, so that is good and proof that XL228 is working for me. Maybe I am only going to need an infusion once a month? I wonder if they allow for that in their protocol, if it is working so well it is not needed every week. Shall ask the good dr. when I see him. Have a great holiday weekend, and Lottie, you and Jimmy and everyone else in the path of the hurrican please stay safe, 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 This is great news. You deserve it. I'm so happy they gave you something that works for the nauseau. I have been on a couple meds that made me nauseaus, it stinks. So happy for you!!! Give Len & RIchard a big hug for me next time you see them. I'll never forget those two. Such dear people. God BLess, Jackie From: ROBERTA DOYLE <rcd1929@...> Subject: [ ] Ann Arbor " " < > Date: Wednesday, September 3, 2008, 10:21 PM Hi All, just got back from Ann Arbor, at 10:30 pm, what a long day. Due to the holiday they were packed, had a dire emergency with one of their patients that held everyone up. i got there at 1:30 for a 2:00 appointment, and did not get infused until 4:30. long day. I tried a different anit nausea drug today, took two Granisetron, and it worked, I did not throw up. I felt a bit nauseous for about 20 min, but was able to go to dinner, eat a steak, and drive home, 175 miles. Did not get to see Len and Ernie, she was infused earlier,. Besides my buddy Len, and another buddy from home here, Ann, there was another fellow getting the XL228, so it seems to be getting a little more populalr. Funny, I am the only one that gets sick! Anyway, right now it is working for me, my qpcr was 6.5 in May, or was it 5.6, and is now .393, so that is good,. can't ask for anything better than that. Everyone have a great weekend, 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Bobby, With news like that who wouldn't have a great weekend, Congratulations.. Anita [ ] Ann Arbor Hi All, just got back from Ann Arbor, at 10:30 pm, what a long day. Due to the holiday they were packed, had a dire emergency with one of their patients that held everyone up. i got there at 1:30 for a 2:00 appointment, and did not get infused until 4:30. long day. I tried a different anit nausea drug today, took two Granisetron, and it worked, I did not throw up. I felt a bit nauseous for about 20 min, but was able to go to dinner, eat a steak, and drive home, 175 miles. Did not get to see Len and Ernie, she was infused earlier,. Besides my buddy Len, and another buddy from home here, Ann, there was another fellow getting the XL228, so it seems to be getting a little more populalr. Funny, I am the only one that gets sick! Anyway, right now it is working for me, my qpcr was 6.5 in May, or was it 5.6, and is now .393, so that is good,. can't ask for anything better than that. Everyone have a great weekend, 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2008 Report Share Posted September 6, 2008 Dear Bobby, Sounds like an exhausting day but at least the results are running in your favor! And the anti-nausea drug worked! It had to be a good feeling to be able to eat a nice dinner and keep it down for the long trip home. Cheers! L [ ] Ann Arbor Hi All, just got back from Ann Arbor, at 10:30 pm, what a long day. Due to the holiday they were packed, had a dire emergency with one of their patients that held everyone up. i got there at 1:30 for a 2:00 appointment, and did not get infused until 4:30. long day. I tried a different anit nausea drug today, took two Granisetron, and it worked, I did not throw up. I felt a bit nauseous for about 20 min, but was able to go to dinner, eat a steak, and drive home, 175 miles. Did not get to see Len and Ernie, she was infused earlier,. Besides my buddy Len, and another buddy from home here, Ann, there was another fellow getting the XL228, so it seems to be getting a little more populalr. Funny, I am the only one that gets sick! Anyway, right now it is working for me, my qpcr was 6.5 in May, or was it 5.6, and is now .393, so that is good,. can't ask for anything better than that. Everyone have a great weekend, 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2008 Report Share Posted September 16, 2008 Bless you Bobbie It sounds like you are really having an ordeal. You are in my prayers every day. God is working! Big Hug, Vicki > > Hi Everyone, boy! what a day yesterday was.When I was waiting to be called in for the infusion I decided to take a Compazine. I also have Ativan (sp). A nurse came by and I asked her which would be better, she said take both, a lot of people do. So I did,. I didn't get infused for about an hour, it takes about 1 1/2 hrs. to finish. I did not throw up, I didn't really feel nauseous. But on the way home, it hit me. I remember very little of the almost 3 hr. drive. I came in the house, at 5, went to bed, got up at nine, had severe diarrhea 3 times, went back to sleep before 10, and slept until 8 . I have felt drugged all day long. My tongue is numb so the taste buds are on the fritz and that is good because I don't want to eat. But I will do one or the other next week, never both. > On a happier note I got to visit with my good buddy Len Paschal and hubby Ernie. She is doing well, we had side by side chairs yesterday 3 more doses and she goes up to my dose and I pray it does as well for her as it has done for me. > Now I am going to behave myself, no matter who comes into my house with pizza, chocolate covered nuts or even peanut butter suffle! I am sure, no matter what my vascular dr. has to say tomorrow, part of it will be lose weight, do my legs a favor! > Blessings to all, love, 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 September 17, 2008 Report Share Posted September 17, 2008 Dear Bobbie, Oh my goodness Bobbie! I am so glad you made it home safely. I have taken Ativan before and just that made me feel drugged. Wow!! How long do you continue the infusions? Say hi to Len and Ernie for me. They are such a nice couple. God Bless, Jackie From: Schepman <vickistu@...> Subject: [ ] Re: Ann Arbor Date: Tuesday, September 16, 2008, 5:59 PM Bless you Bobbie It sounds like you are really having an ordeal. You are in my prayers every day. God is working! Big Hug, Vicki > > Hi Everyone, boy! what a day yesterday was.When I was waiting to be called in for the infusion I decided to take a Compazine. I also have Ativan (sp). A nurse came by and I asked her which would be better, she said take both, a lot of people do. So I did,. I didn't get infused for about an hour, it takes about 1 1/2 hrs. to finish. I did not throw up, I didn't really feel nauseous. But on the way home, it hit me. I remember very little of the almost 3 hr. drive. I came in the house, at 5, went to bed, got up at nine, had severe diarrhea 3 times, went back to sleep before 10, and slept until 8 . I have felt drugged all day long. My tongue is numb so the taste buds are on the fritz and that is good because I don't want to eat. But I will do one or the other next week, never both. > On a happier note I got to visit with my good buddy Len Paschal and hubby Ernie. She is doing well, we had side by side chairs yesterday 3 more doses and she goes up to my dose and I pray it does as well for her as it has done for me. > Now I am going to behave myself, no matter who comes into my house with pizza, chocolate covered nuts or even peanut butter suffle! I am sure, no matter what my vascular dr. has to say tomorrow, part of it will be lose weight, do my legs a favor! > Blessings to all, love, 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...
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