Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Hi Robin, Your welcome. And I always thank all those who participated in the trials that got me into the expanded access trial. The blasts usually disappear when the WBC drops into the normal range. Make sure that you get a copy of each of your blood tests and your BMBs. Once you have them you can easily follow your progress. I am most unhappy with your doctor and would actively seek out a new one. Tell us where in Indiana you live and maybe someone can suggest a new one. His job is to answer all your questions. If he doesn`t have the time then he has to make the time. All of the top CML doctors that I know of have one trait in common. They all take the time to answer all your questions. Looking forward to enrolling you in the Zero club real soon. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of longing4sunnsand Sent: March-24-09 7:08 PM Subject: [ ] Blasts I saw my Onc today and since 2/12/09 when I was diagnosed, my WBC went from 153,900 to 4,000 today. I thought that was fast! My question is ... just because my WBC count went down, does that mean my blasts went down also or could that number remain the same? Sorry I have to ask these questions here, my Onc was too busy to answer my questions, he had a meeting...(I'm miffed) I also want to personally thank anyone who participated in any Gleevec trials. You have made life easier for many of us. I wish you all many blessings. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Robin, Zavie is right... and it was very hard for me to listen to the group. I got a recommendation of a doc based on where I lived and whether she could speak english or not. I was already a wreck and didn't want to have a doc I couldn't understand. I ASKED the doc all about her CML experience and was comfortable enough with the answers. However, when they handed me the paper on CHEMO about my hair falling out and watching not to cut myself while shaving my legs... I should have known. But, I didn't. Maybe I should have know when I got test results back and they charged me $1.00 a page to copy them for me... or when I complained of a side effect she'd practically yell at me and say she'd never read anything like that. Finally, 14 months after initial diagnosis... I made an appointment with U of M. OMG. HE UNDERSTOOD EVERYTHING!! He told me how I felt. He spent time with me (us). He wasn't looking at his watch to see if he was holding up the next patient. He answered all the obscure questions we had written down in the month preceding the visit. The side effects... he said, yeah, he hears that a lot. They GIVE me my test results to take home. In other words, I kind of wasted time by not going to the right doc in the first place. And most likely, had I switch docs earlier.. I wouldn't have a spot on my back from a 1/2 a$$ job of a bone marrow bioposy (from a doc who didn't do them often enough.) Seriously, it may be a longer drive somewhere, but the feeling that the doctor understands you and supports you is WORTH the drive! Tammy _____ From: [mailto: ] On Behalf Of Zavie Sent: Wednesday, March 25, 2009 1:11 AM Subject: RE: [ ] Blasts Hi Robin, Your welcome. And I always thank all those who participated in the trials that got me into the expanded access trial. The blasts usually disappear when the WBC drops into the normal range. Make sure that you get a copy of each of your blood tests and your BMBs. Once you have them you can easily follow your progress. I am most unhappy with your doctor and would actively seek out a new one. Tell us where in Indiana you live and maybe someone can suggest a new one. His job is to answer all your questions. If he doesn`t have the time then he has to make the time. All of the top CML doctors that I know of have one trait in common. They all take the time to answer all your questions. Looking forward to enrolling you in the Zero club real soon. Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca Tel: 613-726-1117 Tel: 561-429-3309 in Florida Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of longing4sunnsand Sent: March-24-09 7:08 PM groups (DOT) <mailto:%40> com Subject: [ ] Blasts I saw my Onc today and since 2/12/09 when I was diagnosed, my WBC went from 153,900 to 4,000 today. I thought that was fast! My question is ... just because my WBC count went down, does that mean my blasts went down also or could that number remain the same? Sorry I have to ask these questions here, my Onc was too busy to answer my questions, he had a meeting...(I'm miffed) I also want to personally thank anyone who participated in any Gleevec trials. You have made life easier for many of us. I wish you all many blessings. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 -Hi Tammy could you tell me the name of the Dr. you saw at U of M, is that the University of land? How long did you have to wait for an appointment? thanks Esther -- In , " Tammy Ferns " <tammy@...> wrote: > > Robin, > > Zavie is right... and it was very hard for me to listen to the group. I got > a recommendation of a doc based on where I lived and whether she could speak > english or not. I was already a wreck and didn't want to have a doc I > couldn't understand. I ASKED the doc all about her CML experience and was > comfortable enough with the answers. However, when they handed me the paper > on CHEMO about my hair falling out and watching not to cut myself while > shaving my legs... I should have known. But, I didn't. Maybe I should have > know when I got test results back and they charged me $1.00 a page to copy > them for me... or when I complained of a side effect she'd practically yell > at me and say she'd never read anything like that. > > Finally, 14 months after initial diagnosis... I made an appointment with U > of M. OMG. HE UNDERSTOOD EVERYTHING!! He told me how I felt. He spent time > with me (us). He wasn't looking at his watch to see if he was holding up the > next patient. He answered all the obscure questions we had written down in > the month preceding the visit. The side effects... he said, yeah, he hears > that a lot. They GIVE me my test results to take home. In other words, I > kind of wasted time by not going to the right doc in the first place. And > most likely, had I switch docs earlier.. I wouldn't have a spot on my back > from a 1/2 a$$ job of a bone marrow bioposy (from a doc who didn't do them > often enough.) > > Seriously, it may be a longer drive somewhere, but the feeling that the > doctor understands you and supports you is WORTH the drive! > > Tammy > > > > _____ > > From: [mailto: ] On Behalf Of Zavie > > Sent: Wednesday, March 25, 2009 1:11 AM > > Subject: RE: [ ] Blasts > > > > Hi Robin, > > Your welcome. And I always thank all those who participated in the trials > that got me into the expanded access trial. > > The blasts usually disappear when the WBC drops into the normal range. > > Make sure that you get a copy of each of your blood tests and your BMBs. > Once you have them you can easily follow your progress. > > I am most unhappy with your doctor and would actively seek out a new one. > Tell us where in Indiana you live and maybe someone can suggest a new one. > His job is to answer all your questions. If he doesn`t have the time then he > has to make the time. All of the top CML doctors that I know of have one > trait in common. They all take the time to answer all your questions. > > Looking forward to enrolling you in the Zero club real soon. > > Zavie > > > > > Zavie (age 70) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca > Tel: 613-726-1117 > Tel: 561-429-3309 in Florida > Fax: 309-296-0807 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: groups (DOT) <mailto:%40> com > [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > longing4sunnsand > Sent: March-24-09 7:08 PM > groups (DOT) <mailto:%40> com > Subject: [ ] Blasts > > I saw my Onc today and since 2/12/09 when I was diagnosed, my WBC went from > 153,900 to 4,000 today. I thought that was fast! My question is ... just > because my WBC count went down, does that mean my blasts went down also or > could that number remain the same? Sorry I have to ask these questions here, > my Onc was too busy to answer my questions, he had a meeting...(I'm miffed) > > I also want to personally thank anyone who participated in any Gleevec > trials. You have made life easier for many of us. I wish you all many > blessings. > > Robin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 I have been thinking about seeing another Onc. This guy I see now is just so close...but I know driving a little longer may mean living a little longer! I wasn't feeling well, thought maybe I had a sinus infection, my head was killing me, thought maybe he'd write me a script for antibiotics but he wouldn't even look up my nose lol He kept shaking my hand and saying sorry I got to go. I have other family with cancer and the consensus is that's typical. You have to hike to your GP for other ailments. Is that what you guys experience? Zavie - Being enrolled in your zero club is one of my goals! > > Robin, > > Zavie is right... and it was very hard for me to listen to the group. I got > a recommendation of a doc based on where I lived and whether she could speak > english or not. I was already a wreck and didn't want to have a doc I > couldn't understand. I ASKED the doc all about her CML experience and was > comfortable enough with the answers. However, when they handed me the paper > on CHEMO about my hair falling out and watching not to cut myself while > shaving my legs... I should have known. But, I didn't. Maybe I should have > know when I got test results back and they charged me $1.00 a page to copy > them for me... or when I complained of a side effect she'd practically yell > at me and say she'd never read anything like that. > > Finally, 14 months after initial diagnosis... I made an appointment with U > of M. OMG. HE UNDERSTOOD EVERYTHING!! He told me how I felt. He spent time > with me (us). He wasn't looking at his watch to see if he was holding up the > next patient. He answered all the obscure questions we had written down in > the month preceding the visit. The side effects... he said, yeah, he hears > that a lot. They GIVE me my test results to take home. In other words, I > kind of wasted time by not going to the right doc in the first place. And > most likely, had I switch docs earlier.. I wouldn't have a spot on my back > from a 1/2 a$$ job of a bone marrow bioposy (from a doc who didn't do them > often enough.) > > Seriously, it may be a longer drive somewhere, but the feeling that the > doctor understands you and supports you is WORTH the drive! > > Tammy > > > > _____ > > From: [mailto: ] On Behalf Of Zavie > > Sent: Wednesday, March 25, 2009 1:11 AM > > Subject: RE: [ ] Blasts > > > > Hi Robin, > > Your welcome. And I always thank all those who participated in the trials > that got me into the expanded access trial. > > The blasts usually disappear when the WBC drops into the normal range. > > Make sure that you get a copy of each of your blood tests and your BMBs. > Once you have them you can easily follow your progress. > > I am most unhappy with your doctor and would actively seek out a new one. > Tell us where in Indiana you live and maybe someone can suggest a new one. > His job is to answer all your questions. If he doesn`t have the time then he > has to make the time. All of the top CML doctors that I know of have one > trait in common. They all take the time to answer all your questions. > > Looking forward to enrolling you in the Zero club real soon. > > Zavie > > > > > Zavie (age 70) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca > Tel: 613-726-1117 > Tel: 561-429-3309 in Florida > Fax: 309-296-0807 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: groups (DOT) <mailto:%40> com > [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > longing4sunnsand > Sent: March-24-09 7:08 PM > groups (DOT) <mailto:%40> com > Subject: [ ] Blasts > > I saw my Onc today and since 2/12/09 when I was diagnosed, my WBC went from > 153,900 to 4,000 today. I thought that was fast! My question is ... just > because my WBC count went down, does that mean my blasts went down also or > could that number remain the same? Sorry I have to ask these questions here, > my Onc was too busy to answer my questions, he had a meeting...(I'm miffed) > > I also want to personally thank anyone who participated in any Gleevec > trials. You have made life easier for many of us. I wish you all many > blessings. > > Robin > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 No, University of Michigan. Dr. Erba. Tammy _____ From: [mailto: ] On Behalf Of snipandtip Sent: Wednesday, March 25, 2009 6:13 PM Subject: Re: [ ] Blasts -Hi Tammy could you tell me the name of the Dr. you saw at U of M, is that the University of land? How long did you have to wait for an appointment? thanks Esther -- In groups (DOT) <mailto:%40> com, " Tammy Ferns " <tammy@...> wrote: > > Robin, > > Zavie is right... and it was very hard for me to listen to the group. I got > a recommendation of a doc based on where I lived and whether she could speak > english or not. I was already a wreck and didn't want to have a doc I > couldn't understand. I ASKED the doc all about her CML experience and was > comfortable enough with the answers. However, when they handed me the paper > on CHEMO about my hair falling out and watching not to cut myself while > shaving my legs... I should have known. But, I didn't. Maybe I should have > know when I got test results back and they charged me $1.00 a page to copy > them for me... or when I complained of a side effect she'd practically yell > at me and say she'd never read anything like that. > > Finally, 14 months after initial diagnosis... I made an appointment with U > of M. OMG. HE UNDERSTOOD EVERYTHING!! He told me how I felt. He spent time > with me (us). He wasn't looking at his watch to see if he was holding up the > next patient. He answered all the obscure questions we had written down in > the month preceding the visit. The side effects... he said, yeah, he hears > that a lot. They GIVE me my test results to take home. In other words, I > kind of wasted time by not going to the right doc in the first place. And > most likely, had I switch docs earlier.. I wouldn't have a spot on my back > from a 1/2 a$$ job of a bone marrow bioposy (from a doc who didn't do them > often enough.) > > Seriously, it may be a longer drive somewhere, but the feeling that the > doctor understands you and supports you is WORTH the drive! > > Tammy > > > > _____ > > From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Zavie > > Sent: Wednesday, March 25, 2009 1:11 AM > groups (DOT) <mailto:%40> com > Subject: RE: [ ] Blasts > > > > Hi Robin, > > Your welcome. And I always thank all those who participated in the trials > that got me into the expanded access trial. > > The blasts usually disappear when the WBC drops into the normal range. > > Make sure that you get a copy of each of your blood tests and your BMBs. > Once you have them you can easily follow your progress. > > I am most unhappy with your doctor and would actively seek out a new one. > Tell us where in Indiana you live and maybe someone can suggest a new one. > His job is to answer all your questions. If he doesn`t have the time then he > has to make the time. All of the top CML doctors that I know of have one > trait in common. They all take the time to answer all your questions. > > Looking forward to enrolling you in the Zero club real soon. > > Zavie > > > > > Zavie (age 70) > 67 Shoreham Avenue > Ottawa, Canada, K2G 3X3 > dxd AUG/99 > INF OCT/99 to FEB/00, CHF > No meds FEB/00 to JAN/01 > Gleevec since MAR/27/01 (400 mg) > CCR SEP/01. #102 in Zero Club > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > 2.9 log reduction Feb/07 > 3.6 log reduction Apr/08 > 3.6 log reduction Sep/08 > e-mail: zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca > Tel: 613-726-1117 > Tel: 561-429-3309 in Florida > Fax: 309-296-0807 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: groups (DOT) <mailto:%40> com > [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > longing4sunnsand > Sent: March-24-09 7:08 PM > groups (DOT) <mailto:%40> com > Subject: [ ] Blasts > > I saw my Onc today and since 2/12/09 when I was diagnosed, my WBC went from > 153,900 to 4,000 today. I thought that was fast! My question is ... just > because my WBC count went down, does that mean my blasts went down also or > could that number remain the same? Sorry I have to ask these questions here, > my Onc was too busy to answer my questions, he had a meeting...(I'm miffed) > > I also want to personally thank anyone who participated in any Gleevec > trials. You have made life easier for many of us. I wish you all many > blessings. > > Robin > > Quote Link to comment Share on other sites More sharing options...
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