Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Dear Skip, I am very, very interested in hearing about AMN because I am being pushed to BMT and get off of Gleevec. I need to arm myself with info for the doctors about this new drug. I read about your recent drop in Plates and the constipation. I have over 950 emails to go through so I'll look and see if I can find yours, if you have given a complete history of your AMN experience. If you have not yet written about it, could you be so kind as to email me privately and let me know the details i.e., where you are treated, if it is going to FDA approval, how long you have been on it, were you on any other prior treatment, what your general opinion of the drug is,etc. etc. Thanks!! Lynne s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Dear Lynne I sent you a private email, please let me know if it all arrives ok, not sure about AOL.. First I have been on AMN107 (Nilotinib) for about 3 months, I was in rather bad shape when I went on it, and had a spot of trouble after being on it. I started out on 800mg a day but due to my reaction to it have been dropped down to 400 mg a day, I hope to get back to 800 mg a day.. I am not sure how long befor AMN gets to market or even approved. (read my private email) I am being treated by a great doctor, he is going away all the time on courses for not only CML but for BMT's as well and treats people all over Atlantic Canada (4 provinces) His name is Couban and you can search on his name you will find him on the internet. I am being treated by Capitol Health in Halifax NS which is about 70klicks from me, at the Old VG site. which is part of the QEII Health Centre. I see a lot of BMT people sitting next to me as I get transfused and they seem fine, but as you know like all treatments for CML there is no cure. Some are a bit more dangerous than others. If I have any advice to anyone is to see your doctor and if not satisfied with the answer see another doctor and another. We here on all have experiences with the bug but none of us are doctors. So you have to trust someone... If you sit in a room by yourself and either pray or meditate I am sure the correct answer will come to you.. But in the meantime I will pray for all of us I hope I do not offend anyone by saying that.. When I was teaching we had a code CCSAM.. which stands for Collect (all information) Consider.. all information Select ...all the information you understand Arrange the information in your mind Master the information and act upon it... that was the doctor and you should do... Skipd --- MoonQn1@... wrote: > Dear Skip, I am very, very interested in hearing > about AMN because I am > being pushed to BMT and get off of Gleevec. I need > to arm myself with info for > the doctors about this new drug. I read about your > recent drop in Plates and the > constipation. I have over 950 emails to go through > so I'll look and see if I > can find yours, if you have given a complete > history of your AMN experience. > If you have not yet written about it, could you be > so kind as to email me > privately and let me know the details i.e., where > you are treated, if it is > going to FDA approval, how long you have been on > it, were you on any other prior > treatment, what your general opinion of the drug > is,etc. etc. Thanks!! > Lynne s > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never miss an email again! Toolbar alerts you the instant new Mail arrives. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 Hi Lynne, If you need to inform your doctors about the AMN drug, you are going to the wrong doctors. They should be informing you about the new drugs that are out there. You need to be seen by a doctor who specializes in CML. Skip didn't have to tell his doctor about AMN107. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, 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 PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem Re: [ ] Re: my story-Skip Dear Skip, I am very, very interested in hearing about AMN because I am being pushed to BMT and get off of Gleevec. I need to arm myself with info for the doctors about this new drug. I read about your recent drop in Plates and the constipation. I have over 950 emails to go through so I'll look and see if I can find yours, if you have given a complete history of your AMN experience. If you have not yet written about it, could you be so kind as to email me privately and let me know the details i.e., where you are treated, if it is going to FDA approval, how long you have been on it, were you on any other prior treatment, what your general opinion of the drug is,etc. etc. Thanks!! Lynne s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 Thanks Zavie I must make it clear to all BMT was never an option it was not an option 29 yeas ago as it was not practiced here. I was ASKED to go on AMN107. It was pointed out to me Nilotinib (AMN107) was much stronger, and it just may stop my need for transfusions which my body did not respond to Gleevec, although I may be put back on it if AMN107 fails. I encourage you as Zavie does go see a doctor who may well put you on other CML drugs or may well indeed put you on Nilotinib or even strongly suggest a BMT but make sure you have all your options. Remember Nilotinib is still just a study drug. My reasons for saying yes to the trial was it may well help others and even help me. Skipd --- Zavie miller <zmiller@...> wrote: > Hi Lynne, > > If you need to inform your doctors about the AMN > drug, you are going to the > wrong doctors. They should be informing you about > the new drugs that are out > there. You need to be seen by a doctor who > specializes in CML. > > Skip didn't have to tell his doctor about AMN107. > > Zavie > > Zavie (age 68) > 67 Shoreham Avenue > Ottawa, Canada, 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 > PCRU 5/02 at RVH > 2.8 log reduction Sep/05 > 3.0 log reduction Jan/06 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > > Re: [ ] Re: my story-Skip > > Dear Skip, I am very, very interested in hearing > about AMN because I am > being pushed to BMT and get off of Gleevec. I need > to arm myself with info > for > the doctors about this new drug. I read about your > recent drop in Plates and > the > constipation. I have over 950 emails to go through > so I'll look and see if > I > can find yours, if you have given a complete > history of your AMN > experience. > If you have not yet written about it, could you be > so kind as to email me > privately and let me know the details i.e., where > you are treated, if it is > > going to FDA approval, how long you have been on > it, were you on any other > prior > treatment, what your general opinion of the drug > is,etc. etc. Thanks!! > Lynne s > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2007 Report Share Posted February 11, 2007 In a message dated 2/10/2007 4:10:02 P.M. Eastern Standard Time, skipd_2002@... writes: Dear Lynne I sent you a private email, please let me know if it all arrives ok, not sure about AOL.. Dear Skip, your email arrived fine and I wrote to you just a minute ago privately. You are my hero!! - Lynne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Hey " My HERO " . . .Aha Skip, Lynne has added you as her 'Hero' also; you've always been mine. . . " K " " K " " I AIN'T FINISHED YET " !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 I have added to the web site my counts as of Monday htt://easyskip.tripod.com thanks to those who signed the guest book with such encouragement I keep you all in my prayers.. Kay and Lynne I am no hero I had no part in my long battle with CML. The hero is or should be everyones hero I am just along for the ride. The powers that be are looking out for me. SkipD --- IAintFinishedYet <kttweety@...> wrote: > Hey " My HERO " . . .Aha Skip, Lynne has added you as > her 'Hero' also; you've always been mine. . . " K " > > " K " > " I AIN'T FINISHED YET " !!! > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never Miss an Email Stay connected with on your mobile. Get started! http://mobile./services?promote=mail Quote Link to comment Share on other sites More sharing options...
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