Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Hello everyone... I dont post here often at all anymore, is doing so well and I have so little to contribute. I do read the posts here as often as I can though and this time your test results and Gleevec dosage, , makes me post again.... As far as I know anything below 400mg of Gleevec is too small a dosage and it worries me, especially in light of your last PCR test - 126%?. Maybe I am really far out of line by saying this, but - can you get to a specialist and make sure your doctor has you on the right course of treatment? When was diagnosed, we knew so very little but ended up 'firing' two doctors before settling with one that we felt knew enough about CML and its treatment, and was willing to talk with Dr Druker if and when needed.. I sincerely apologize if I have the wrong end of the stick, or offend you in any way..... and I am quite willing to accept that I am wrong in my assumptions... And Lottie - how absolutely happy I am with your Zavie Number! I am so incredibly grateful that 's CML seems to be staying under control and that life has moved on in so many ways. Here's wishing everyone a New Year full of zero's, great test results and peace. love and light Annie http://livingwithcml.blogspot.com > > I want a t-shirt and hat when I make the zero club! It's going to be a > while.... I just got my PCR back and it's at 126% I don't remember the > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... Yay! > J > > > > From: [mailto: ] On Behalf Of > Zavie > Sent: Tuesday, January 05, 2010 7:12 AM > > Subject: RE: [ ] TShirts design > > > > > > Hi Barbara, > > Count me in for a T-Shirt. > > Over the past year I have been making Zero Club hats. A very simple > design. > It's an all black baseball cap with the lettering Zavie's Zero Club and > the > Zero Club number in the middle. When I'm travelling I try to meet all > the > CMLers I can and if I know in advance I get a hat made up with their > number. > For the long range plan I expect that we will have a Zero Club gathering > and > it will be an honor to hand out the caps. > > I have given Zero Club hats with my number on it (102) to people who are > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > Druker. > They were my trial doctors at OHSU in 2001. > > Check the 'photo section' of the web site for photos of these caps. > > # 1 - Marty Gartenberg > # 103 - Amy Fisher > # 123 - Orenstein > # 584 - Rosenthal > # 982 - Leah Peer > # 1078 - Matt Maynor > > Zavie > > > Zavie (age 71) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > e-mail: zmiller@... <mailto:zmiller%40sympatico.ca> > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: <mailto:%40> [mailto: > <mailto:%40> ] On Behalf Of > Barbara Hundley > Sent: January-05-10 7:24 AM > <mailto:%40> > Subject: [ ] TShirts design > > I have a tshirt designing/printing > system for anyone that wants to have a shirt for our group. > > How about anyone interested in a design, scratch it out on paper or > computer > design and send to me. It could be just for CML or even CML group. > I'll scan them all and put on the site for a vote. > > If interested, let's say all must be in by Feb1 > > Barbara Hundley > Fayetteville, GA > http://personalized <http://personalizedforu.com> foru.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Hi Annie! Thank you for your kind advice. I too had some doubts.... I have three teams of doctors. UCLA, Cedar Sinid, and Holy Cross in LA. They are all speaking the same language. When I was DX on 10.22.09 I was put on hydroxura. That didn't work, 2 weeks later I was on Gleevec. I took 400 for a week and felt like I was going to die. Fever, night sweats, chills, pain like you wouldn't believe, etc... They dropped me down to 200. I have been taking that for 6 weeks and have gotten used to feeling like crap! When my PCR came back at the level it did they increased my dose to 300. I have been taking that for 3 days now and oh am I not happy! It's amazing how I felt totally fine prior to 10.22 and now it's a struggle to keep my eyes open past 7pm. The pain I feel 24/7 is indescribable. That said, I feel so lucky to have you all in a group where I can vent. To be able to have a cancer that has out-patient treatment, to not have to receive radiation.... Oh how it can be much worse! I've been glued to my email when someone sent a question about spyracel. My doctors tell me that if I can't take the 400 of Gleevec then they are going to place me on that.... I'm going to try and get through the Gleevec because I've told that it is the best drug for CML. Who knows, if I can't handle it, then I guess I will become a spy! J Thank you again for your kind words! Love you all, " Chemo-Sabi " DX 10.22.09 12.30.09- PCR 126% From: [mailto: ] On Behalf Of Annie B Sent: Tuesday, January 05, 2010 8:10 PM Subject: [ ] For , Lottie and all... Hello everyone... I dont post here often at all anymore, is doing so well and I have so little to contribute. I do read the posts here as often as I can though and this time your test results and Gleevec dosage, , makes me post again.... As far as I know anything below 400mg of Gleevec is too small a dosage and it worries me, especially in light of your last PCR test - 126%?. Maybe I am really far out of line by saying this, but - can you get to a specialist and make sure your doctor has you on the right course of treatment? When was diagnosed, we knew so very little but ended up 'firing' two doctors before settling with one that we felt knew enough about CML and its treatment, and was willing to talk with Dr Druker if and when needed.. I sincerely apologize if I have the wrong end of the stick, or offend you in any way..... and I am quite willing to accept that I am wrong in my assumptions... And Lottie - how absolutely happy I am with your Zavie Number! I am so incredibly grateful that 's CML seems to be staying under control and that life has moved on in so many ways. Here's wishing everyone a New Year full of zero's, great test results and peace. love and light Annie http://livingwithcml.blogspot.com > > I want a t-shirt and hat when I make the zero club! It's going to be a > while.... I just got my PCR back and it's at 126% I don't remember the > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... Yay! > J > > > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of > Zavie > Sent: Tuesday, January 05, 2010 7:12 AM > <mailto:%40> > Subject: RE: [ ] TShirts design > > > > > > Hi Barbara, > > Count me in for a T-Shirt. > > Over the past year I have been making Zero Club hats. A very simple > design. > It's an all black baseball cap with the lettering Zavie's Zero Club and > the > Zero Club number in the middle. When I'm travelling I try to meet all > the > CMLers I can and if I know in advance I get a hat made up with their > number. > For the long range plan I expect that we will have a Zero Club gathering > and > it will be an honor to hand out the caps. > > I have given Zero Club hats with my number on it (102) to people who are > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > Druker. > They were my trial doctors at OHSU in 2001. > > Check the 'photo section' of the web site for photos of these caps. > > # 1 - Marty Gartenberg > # 103 - Amy Fisher > # 123 - Orenstein > # 584 - Rosenthal > # 982 - Leah Peer > # 1078 - Matt Maynor > > Zavie > > > Zavie (age 71) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > e-mail: zmiller@... <mailto:zmiller%40sympatico.ca> > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: <mailto:%40> <mailto:%40> [mailto: > <mailto:%40> <mailto:%40> ] On Behalf Of > Barbara Hundley > Sent: January-05-10 7:24 AM > <mailto:%40> <mailto:%40> > Subject: [ ] TShirts design > > I have a tshirt designing/printing > system for anyone that wants to have a shirt for our group. > > How about anyone interested in a design, scratch it out on paper or > computer > design and send to me. It could be just for CML or even CML group. > I'll scan them all and put on the site for a vote. > > If interested, let's say all must be in by Feb1 > > Barbara Hundley > Fayetteville, GA > http://personalized <http://personalizedforu.com> foru.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 I too was put on hydroxura and Gleevec at the same time..for me it was the hydroxura that was the worst...they say that it takes 3-4 weeks for the side effects of that to wear off - so hang in there...I have been off it a month and am feeling much better...I do get tired from the Gleevec but I am on 800 mg/day...my side effects are minimal now that my body is adjusting to it - only complaint I really have is a rash that flares up every once and while...makes me feel like I've got a really bad sunburn...on the hydroxura - it made me feel like my bones were disintergrating and a burning pain in my hips bones...hang in there..the results in your bloodwork are sometimes worth all the discomforts...sending you good thoughts and prayers! Cheryl > > > > I want a t-shirt and hat when I make the zero club! It's going to be a > > while.... I just got my PCR back and it's at 126% I don't remember the > > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... > Yay! > > J > > > > > > > > From: <mailto:%40> [mailto: > <mailto:%40> ] On Behalf Of > > Zavie > > Sent: Tuesday, January 05, 2010 7:12 AM > > <mailto:%40> > > Subject: RE: [ ] TShirts design > > > > > > > > > > > > Hi Barbara, > > > > Count me in for a T-Shirt. > > > > Over the past year I have been making Zero Club hats. A very simple > > design. > > It's an all black baseball cap with the lettering Zavie's Zero Club > and > > the > > Zero Club number in the middle. When I'm travelling I try to meet all > > the > > CMLers I can and if I know in advance I get a hat made up with their > > number. > > For the long range plan I expect that we will have a Zero Club > gathering > > and > > it will be an honor to hand out the caps. > > > > I have given Zero Club hats with my number on it (102) to people who > are > > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > > Druker. > > They were my trial doctors at OHSU in 2001. > > > > Check the 'photo section' of the web site for photos of these > caps. > > > > # 1 - Marty Gartenberg > > # 103 - Amy Fisher > > # 123 - Orenstein > > # 584 - Rosenthal > > # 982 - Leah Peer > > # 1078 - Matt Maynor > > > > Zavie > > > > > > Zavie (age 71) > > 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 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > e-mail: zmiller@ <mailto:zmiller%40sympatico.ca> > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > YM: zaviemiller > > Skype: Zavie > > > > _____ > > > > From: <mailto:%40> > <mailto:%40> [mailto: > > <mailto:%40> > <mailto:%40> ] On Behalf Of > > Barbara Hundley > > Sent: January-05-10 7:24 AM > > <mailto:%40> > <mailto:%40> > > Subject: [ ] TShirts design > > > > I have a tshirt designing/printing > > system for anyone that wants to have a shirt for our group. > > > > How about anyone interested in a design, scratch it out on paper or > > computer > > design and send to me. It could be just for CML or even CML > group. > > I'll scan them all and put on the site for a vote. > > > > If interested, let's say all must be in by Feb1 > > > > Barbara Hundley > > Fayetteville, GA > > http://personalized <http://personalizedforu.com> foru.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Hi Oh good, I am glad you have a good team working with you. I really hope that your treatment becomes easier on you - that pain does not sound pleasant at all. I think of you often as I have your bracelet hanging on my computer monitor Take care and I will be sending you wishes and hopes for easier days. love and light Annie http://livingwithcml.blogspot.com > > > > I want a t-shirt and hat when I make the zero club! It's going to be a > > while.... I just got my PCR back and it's at 126% I don't remember the > > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... > Yay! > > J > > > > > > > > From: <mailto:%40> [mailto: > <mailto:%40> ] On Behalf Of > > Zavie > > Sent: Tuesday, January 05, 2010 7:12 AM > > <mailto:%40> > > Subject: RE: [ ] TShirts design > > > > > > > > > > > > Hi Barbara, > > > > Count me in for a T-Shirt. > > > > Over the past year I have been making Zero Club hats. A very simple > > design. > > It's an all black baseball cap with the lettering Zavie's Zero Club > and > > the > > Zero Club number in the middle. When I'm travelling I try to meet all > > the > > CMLers I can and if I know in advance I get a hat made up with their > > number. > > For the long range plan I expect that we will have a Zero Club > gathering > > and > > it will be an honor to hand out the caps. > > > > I have given Zero Club hats with my number on it (102) to people who > are > > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > > Druker. > > They were my trial doctors at OHSU in 2001. > > > > Check the 'photo section' of the web site for photos of these > caps. > > > > # 1 - Marty Gartenberg > > # 103 - Amy Fisher > > # 123 - Orenstein > > # 584 - Rosenthal > > # 982 - Leah Peer > > # 1078 - Matt Maynor > > > > Zavie > > > > > > Zavie (age 71) > > 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 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > e-mail: zmiller@ <mailto:zmiller%40sympatico.ca> > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > YM: zaviemiller > > Skype: Zavie > > > > _____ > > > > From: <mailto:%40> > <mailto:%40> [mailto: > > <mailto:%40> > <mailto:%40> ] On Behalf Of > > Barbara Hundley > > Sent: January-05-10 7:24 AM > > <mailto:%40> > <mailto:%40> > > Subject: [ ] TShirts design > > > > I have a tshirt designing/printing > > system for anyone that wants to have a shirt for our group. > > > > How about anyone interested in a design, scratch it out on paper or > > computer > > design and send to me. It could be just for CML or even CML > group. > > I'll scan them all and put on the site for a vote. > > > > If interested, let's say all must be in by Feb1 > > > > Barbara Hundley > > Fayetteville, GA > > http://personalized <http://personalizedforu.com> foru.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Good luck with the increased imatinib/gleevec. I had worse side effects for the first 6-8weeks than I do now - in fact, now i only really get acid reflux. So while I certainly had nothing compared to what you describe, I would say - stick with it and maybe experiment with when you take it. After some messing around, I found about an hour after my evening meal was the best time - some cramps, acid reflux but most importantly no nausea and much less of anything else. And the tiredness subsided - still get dozy in the evening but then at least I sleep well! As Annie says, 400mg is generally accepted as necessary as an effective dose (short term reductions are prescribed I know but it's best I understand not to stay with that as it is thought it might encourage resistance).  I've also read that adherence to the treatment regimen can have a major impact on depth of response. If you do find you're glivec intolerant, and you may be, then others here on second line can tell you about those. It may even prove the case that these newer drugs are better as first line therapy than glivec - there is data already to suggest that may be the case. I though chose glivec first simply because it was the standard. Good luck and stick with it. It should get better and you are right - we are lucky to be in an age where these new therapies are around. I do feel the few side effects I get are a small price. dx May 09.  83% bcr/abl ratio at dx imatinib/glivec May 09 1 log reduction July 09 3 log reduction Sept 09 undetectable Nov 09 ________________________________ From: " Romero, " <ryan.romero@...> Sent: Wed, January 6, 2010 2:04:31 PM Subject: RE: [ ] For , Lottie and all...  Hi Annie! Thank you for your kind advice. I too had some doubts..... I have three teams of doctors. UCLA, Cedar Sinid, and Holy Cross in LA. They are all speaking the same language. When I was DX on 10.22.09 I was put on hydroxura. That didn't work, 2 weeks later I was on Gleevec. I took 400 for a week and felt like I was going to die. Fever, night sweats, chills, pain like you wouldn't believe, etc... They dropped me down to 200. I have been taking that for 6 weeks and have gotten used to feeling like crap! When my PCR came back at the level it did they increased my dose to 300. I have been taking that for 3 days now and oh am I not happy! It's amazing how I felt totally fine prior to 10.22 and now it's a struggle to keep my eyes open past 7pm. The pain I feel 24/7 is indescribable. That said, I feel so lucky to have you all in a group where I can vent. To be able to have a cancer that has out-patient treatment, to not have to receive radiation... . Oh how it can be much worse! I've been glued to my email when someone sent a question about spyracel. My doctors tell me that if I can't take the 400 of Gleevec then they are going to place me on that.... I'm going to try and get through the Gleevec because I've told that it is the best drug for CML. Who knows, if I can't handle it, then I guess I will become a spy! J Thank you again for your kind words! Love you all, " Chemo-Sabi " DX 10..22.09 12.30.09- PCR 126% From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Annie B Sent: Tuesday, January 05, 2010 8:10 PM groups (DOT) com Subject: [ ] For , Lottie and all... Hello everyone... I dont post here often at all anymore, is doing so well and I have so little to contribute. I do read the posts here as often as I can though and this time your test results and Gleevec dosage, , makes me post again.... As far as I know anything below 400mg of Gleevec is too small a dosage and it worries me, especially in light of your last PCR test - 126%?. Maybe I am really far out of line by saying this, but - can you get to a specialist and make sure your doctor has you on the right course of treatment? When was diagnosed, we knew so very little but ended up 'firing' two doctors before settling with one that we felt knew enough about CML and its treatment, and was willing to talk with Dr Druker if and when needed.. I sincerely apologize if I have the wrong end of the stick, or offend you in any way..... and I am quite willing to accept that I am wrong in my assumptions. .. And Lottie - how absolutely happy I am with your Zavie Number! I am so incredibly grateful that 's CML seems to be staying under control and that life has moved on in so many ways. Here's wishing everyone a New Year full of zero's, great test results and peace. love and light Annie http://livingwithcm l.blogspot. com > > I want a t-shirt and hat when I make the zero club! It's going to be a > while.... I just got my PCR back and it's at 126% I don't remember the > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... Yay! > J > > > > From: groups (DOT) com <mailto:% 40groups. com> [mailto: groups (DOT) com <mailto:% 40groups. com> ] On Behalf Of > Zavie > Sent: Tuesday, January 05, 2010 7:12 AM > groups (DOT) com <mailto:% 40groups. com> > Subject: RE: [ ] TShirts design > > > > > > Hi Barbara, > > Count me in for a T-Shirt. > > Over the past year I have been making Zero Club hats. A very simple > design. > It's an all black baseball cap with the lettering Zavie's Zero Club and > the > Zero Club number in the middle. When I'm travelling I try to meet all > the > CMLers I can and if I know in advance I get a hat made up with their > number. > For the long range plan I expect that we will have a Zero Club gathering > and > it will be an honor to hand out the caps. > > I have given Zero Club hats with my number on it (102) to people who are > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > Druker. > They were my trial doctors at OHSU in 2001. > > Check the 'photo section' of the web site for photos of these caps. > > # 1 - Marty Gartenberg > # 103 - Amy Fisher > # 123 - Orenstein > # 584 - Rosenthal > # 982 - Leah Peer > # 1078 - Matt Maynor > > Zavie > > > Zavie (age 71) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > e-mail: zmiller@... <mailto:zmiller% 40sympatico. ca> > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> [mailto: > groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> ] On Behalf Of > Barbara Hundley > Sent: January-05-10 7:24 AM > groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> > Subject: [ ] TShirts design > > I have a tshirt designing/printing > system for anyone that wants to have a shirt for our group. > > How about anyone interested in a design, scratch it out on paper or > computer > design and send to me. It could be just for CML or even CML group. > I'll scan them all and put on the site for a vote. > > If interested, let's say all must be in by Feb1 > > Barbara Hundley > Fayetteville, GA > http://personalized <http://personalized foru.com> foru.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Thank you Annie! Tell I'm glad he is doing well! Take care my friend. From: [mailto: ] On Behalf Of Annie B Sent: Wednesday, January 06, 2010 6:53 AM Subject: Re: [ ] For , Lottie and all... Hi Oh good, I am glad you have a good team working with you. I really hope that your treatment becomes easier on you - that pain does not sound pleasant at all. I think of you often as I have your bracelet hanging on my computer monitor Take care and I will be sending you wishes and hopes for easier days. love and light Annie http://livingwithcml.blogspot.com > > > > I want a t-shirt and hat when I make the zero club! It's going to be a > > while.... I just got my PCR back and it's at 126% I don't remember the > > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... > Yay! > > J > > > > > > > > From: <mailto:%40> <mailto:%40> [mailto: > <mailto:%40> <mailto:%40> ] On Behalf Of > > Zavie > > Sent: Tuesday, January 05, 2010 7:12 AM > > <mailto:%40> <mailto:%40> > > Subject: RE: [ ] TShirts design > > > > > > > > > > > > Hi Barbara, > > > > Count me in for a T-Shirt. > > > > Over the past year I have been making Zero Club hats. A very simple > > design. > > It's an all black baseball cap with the lettering Zavie's Zero Club > and > > the > > Zero Club number in the middle. When I'm travelling I try to meet all > > the > > CMLers I can and if I know in advance I get a hat made up with their > > number. > > For the long range plan I expect that we will have a Zero Club > gathering > > and > > it will be an honor to hand out the caps. > > > > I have given Zero Club hats with my number on it (102) to people who > are > > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > > Druker. > > They were my trial doctors at OHSU in 2001. > > > > Check the 'photo section' of the web site for photos of these > caps. > > > > # 1 - Marty Gartenberg > > # 103 - Amy Fisher > > # 123 - Orenstein > > # 584 - Rosenthal > > # 982 - Leah Peer > > # 1078 - Matt Maynor > > > > Zavie > > > > > > Zavie (age 71) > > 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 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > e-mail: zmiller@ <mailto:zmiller%40sympatico.ca> > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > YM: zaviemiller > > Skype: Zavie > > > > _____ > > > > From: <mailto:%40> <mailto:%40> > <mailto:%40> [mailto: > > <mailto:%40> <mailto:%40> > <mailto:%40> ] On Behalf Of > > Barbara Hundley > > Sent: January-05-10 7:24 AM > > <mailto:%40> <mailto:%40> > <mailto:%40> > > Subject: [ ] TShirts design > > > > I have a tshirt designing/printing > > system for anyone that wants to have a shirt for our group. > > > > How about anyone interested in a design, scratch it out on paper or > > computer > > design and send to me. It could be just for CML or even CML > group. > > I'll scan them all and put on the site for a vote. > > > > If interested, let's say all must be in by Feb1 > > > > Barbara Hundley > > Fayetteville, GA > > http://personalized <http://personalizedforu.com> foru.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Thank you ! From: [mailto: ] On Behalf Of Willoughby Sent: Wednesday, January 06, 2010 7:02 AM Subject: Re: [ ] For , Lottie and all... Good luck with the increased imatinib/gleevec. I had worse side effects for the first 6-8weeks than I do now - in fact, now i only really get acid reflux. So while I certainly had nothing compared to what you describe, I would say - stick with it and maybe experiment with when you take it. After some messing around, I found about an hour after my evening meal was the best time - some cramps, acid reflux but most importantly no nausea and much less of anything else. And the tiredness subsided - still get dozy in the evening but then at least I sleep well! As Annie says, 400mg is generally accepted as necessary as an effective dose (short term reductions are prescribed I know but it's best I understand not to stay with that as it is thought it might encourage resistance). I've also read that adherence to the treatment regimen can have a major impact on depth of response. If you do find you're glivec intolerant, and you may be, then others here on second line can tell you about those. It may even prove the case that these newer drugs are better as first line therapy than glivec - there is data already to suggest that may be the case. I though chose glivec first simply because it was the standard. Good luck and stick with it. It should get better and you are right - we are lucky to be in an age where these new therapies are around. I do feel the few side effects I get are a small price. dx May 09. 83% bcr/abl ratio at dx imatinib/glivec May 09 1 log reduction July 09 3 log reduction Sept 09 undetectable Nov 09 ________________________________ From: " Romero, " <ryan.romero@... <mailto:ryan.romero%40callfusion.com> > <mailto:%40> Sent: Wed, January 6, 2010 2:04:31 PM Subject: RE: [ ] For , Lottie and all... Hi Annie! Thank you for your kind advice. I too had some doubts..... I have three teams of doctors. UCLA, Cedar Sinid, and Holy Cross in LA. They are all speaking the same language. When I was DX on 10.22.09 I was put on hydroxura. That didn't work, 2 weeks later I was on Gleevec. I took 400 for a week and felt like I was going to die. Fever, night sweats, chills, pain like you wouldn't believe, etc... They dropped me down to 200. I have been taking that for 6 weeks and have gotten used to feeling like crap! When my PCR came back at the level it did they increased my dose to 300. I have been taking that for 3 days now and oh am I not happy! It's amazing how I felt totally fine prior to 10.22 and now it's a struggle to keep my eyes open past 7pm. The pain I feel 24/7 is indescribable. That said, I feel so lucky to have you all in a group where I can vent. To be able to have a cancer that has out-patient treatment, to not have to receive radiation... . Oh how it can be much worse! I've been glued to my email when someone sent a question about spyracel. My doctors tell me that if I can't take the 400 of Gleevec then they are going to place me on that.... I'm going to try and get through the Gleevec because I've told that it is the best drug for CML. Who knows, if I can't handle it, then I guess I will become a spy! J Thank you again for your kind words! Love you all, " Chemo-Sabi " DX 10..22.09 12.30.09- PCR 126% From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Annie B Sent: Tuesday, January 05, 2010 8:10 PM groups (DOT) com Subject: [ ] For , Lottie and all... Hello everyone... I dont post here often at all anymore, is doing so well and I have so little to contribute. I do read the posts here as often as I can though and this time your test results and Gleevec dosage, , makes me post again.... As far as I know anything below 400mg of Gleevec is too small a dosage and it worries me, especially in light of your last PCR test - 126%?. Maybe I am really far out of line by saying this, but - can you get to a specialist and make sure your doctor has you on the right course of treatment? When was diagnosed, we knew so very little but ended up 'firing' two doctors before settling with one that we felt knew enough about CML and its treatment, and was willing to talk with Dr Druker if and when needed.. I sincerely apologize if I have the wrong end of the stick, or offend you in any way..... and I am quite willing to accept that I am wrong in my assumptions. .. And Lottie - how absolutely happy I am with your Zavie Number! I am so incredibly grateful that 's CML seems to be staying under control and that life has moved on in so many ways. Here's wishing everyone a New Year full of zero's, great test results and peace. love and light Annie http://livingwithcm l.blogspot. com > > I want a t-shirt and hat when I make the zero club! It's going to be a > while.... I just got my PCR back and it's at 126% I don't remember the > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... Yay! > J > > > > From: groups (DOT) com <mailto:% 40groups. com> [mailto: groups (DOT) com <mailto:% 40groups. com> ] On Behalf Of > Zavie > Sent: Tuesday, January 05, 2010 7:12 AM > groups (DOT) com <mailto:% 40groups. com> > Subject: RE: [ ] TShirts design > > > > > > Hi Barbara, > > Count me in for a T-Shirt. > > Over the past year I have been making Zero Club hats. A very simple > design. > It's an all black baseball cap with the lettering Zavie's Zero Club and > the > Zero Club number in the middle. When I'm travelling I try to meet all > the > CMLers I can and if I know in advance I get a hat made up with their > number. > For the long range plan I expect that we will have a Zero Club gathering > and > it will be an honor to hand out the caps. > > I have given Zero Club hats with my number on it (102) to people who are > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > Druker. > They were my trial doctors at OHSU in 2001. > > Check the 'photo section' of the web site for photos of these caps. > > # 1 - Marty Gartenberg > # 103 - Amy Fisher > # 123 - Orenstein > # 584 - Rosenthal > # 982 - Leah Peer > # 1078 - Matt Maynor > > Zavie > > > Zavie (age 71) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > e-mail: zmiller@... <mailto:zmiller% 40sympatico. ca> > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > YM: zaviemiller > Skype: Zavie > > _____ > > From: groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> [mailto: > groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> ] On Behalf Of > Barbara Hundley > Sent: January-05-10 7:24 AM > groups (DOT) com <mailto:% 40groups. com> <mailto:% 40groups. com> > Subject: [ ] TShirts design > > I have a tshirt designing/printing > system for anyone that wants to have a shirt for our group. > > How about anyone interested in a design, scratch it out on paper or > computer > design and send to me. It could be just for CML or even CML group. > I'll scan them all and put on the site for a vote. > > If interested, let's say all must be in by Feb1 > > Barbara Hundley > Fayetteville, GA > http://personalized <http://personalized foru.com> foru.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 , Like you I had alot of troubles with Gleevec..I was on 600mg and reduced to 400 and still had troubles..Switched to Spryrcel and am doing so much better.I am also at a 4 log reduction so doing good there.No more iron infusions and weird labs like when I was on Gleevec..Good luck.. SharonS > > > > I want a t-shirt and hat when I make the zero club! It's going to be a > > while.... I just got my PCR back and it's at 126% I don't remember the > > ratio though.... I just moved up from 200mg to 300 mg of Gleevec... > Yay! > > J > > > > > > > > From: <mailto:%40> [mailto: > <mailto:%40> ] On Behalf Of > > Zavie > > Sent: Tuesday, January 05, 2010 7:12 AM > > <mailto:%40> > > Subject: RE: [ ] TShirts design > > > > > > > > > > > > Hi Barbara, > > > > Count me in for a T-Shirt. > > > > Over the past year I have been making Zero Club hats. A very simple > > design. > > It's an all black baseball cap with the lettering Zavie's Zero Club > and > > the > > Zero Club number in the middle. When I'm travelling I try to meet all > > the > > CMLers I can and if I know in advance I get a hat made up with their > > number. > > For the long range plan I expect that we will have a Zero Club > gathering > > and > > it will be an honor to hand out the caps. > > > > I have given Zero Club hats with my number on it (102) to people who > are > > dear to me. At ASH in New Orleans I gave one to Dr. Mauro and Dr. > > Druker. > > They were my trial doctors at OHSU in 2001. > > > > Check the 'photo section' of the web site for photos of these > caps. > > > > # 1 - Marty Gartenberg > > # 103 - Amy Fisher > > # 123 - Orenstein > > # 584 - Rosenthal > > # 982 - Leah Peer > > # 1078 - Matt Maynor > > > > Zavie > > > > > > Zavie (age 71) > > 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 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > e-mail: zmiller@ <mailto:zmiller%40sympatico.ca> > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > YM: zaviemiller > > Skype: Zavie > > > > _____ > > > > From: <mailto:%40> > <mailto:%40> [mailto: > > <mailto:%40> > <mailto:%40> ] On Behalf Of > > Barbara Hundley > > Sent: January-05-10 7:24 AM > > <mailto:%40> > <mailto:%40> > > Subject: [ ] TShirts design > > > > I have a tshirt designing/printing > > system for anyone that wants to have a shirt for our group. > > > > How about anyone interested in a design, scratch it out on paper or > > computer > > design and send to me. It could be just for CML or even CML > group. > > I'll scan them all and put on the site for a vote. > > > > If interested, let's say all must be in by Feb1 > > > > Barbara Hundley > > Fayetteville, GA > > http://personalized <http://personalizedforu.com> foru.com > > > > Quote Link to comment Share on other sites More sharing options...
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