Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Dear Susie, I can assure you that there is a difference between AMN107 - being investigated by Novartis and BMS 354825 which is called Dasatinib and is being investigated by Bristol Myer Squibb. You can easily access medical research papers if you take the time to research the information yourself. And both the drugs are different than Glivec. If they were not, what hope would there be of any of us getting a cytogentic response and a relief from side effects!! You have had CML for over 3 years and have been seeing one of THE top CML experts in the world and yet the information you are sharing with us is not reflective of either. This confuses me. Additionally, both you and Jackie have stated that each of your docs (both very reputable doctors) are telling you that we need to 'wake up to the fact that these drugs are very toxic " . This too confuses me. This suggests that Australia is potentiall researching and would be documenting new information that the Pharma companies and NONE of the North American or European medical community knows about and/or is concealing. I am aware that these things happen but it is staggering to consider that these doctors are sharing this potentially legally explosive issue with you patients without published work to back it up that all their peers can review. If this is indeed going on then I want my day in court to sue them all! I have attched quotes from your emails and have emailed my trial doctor and Dr. Hugues to request information about these discrepancies as they frighten me. I am trying to stay alive here and what you are telling us is compromising my sanity. Also I believe R. has met Dr. Hugues and I hope that he can help clarify this confusion when he returns. dx 11/98 > > For all who have been praying and fingers crossed for me to get on new > drug hasn't happend yet. Spoke to Tim today and he said he is waiting > for a reply from America...can you beleive it...bizare..also I asked > him what is the differnce between amn and bms and he said nothing..and > that I wouldn't be avaliable to go on that drug at this stage. So > fingers crossed that he'll hear from USA soon. > > Susie Leech > DX Nov 2002 > Currently off Gleevec > Fingers XX > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Hi , it was a dr hoih.(not sure of spelling) who once told me about the toxicity of gleevec whihc also scared me..but hey i still only up to three months ago took it. Tim has mentioned to me about being toxic...but alot of people cope with it...there are some people like me that are not coping with it and so there for we are trying to get on another drug. I do get confused even when ive got a great doctor because you are told one then and then you hear another...im opend and i like to hear all sides of stories maybe. And yes ive found stuff on the net about new drugs but i wanted to hear from others that have been or are going on it..before i try it. Australia i think isnt as advanced in our meds as USA so we havent had this stuff around as long as you guys. Susie Leech DX Nov 2002 Currently off Gleevec Fingers XX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 At 10:40 PM 2/22/06 +0000, you wrote: >Australia i think isnt as advanced in our meds as USA so we havent had >this stuff around as long as you guys. Susie, Are you trying to get on BMS or AMN....I don't know which trial is open in Australia? But almost everyone who is in a BMS trial is posting on Jerry's website..... www.newcmldrug.com Click on BMS Discussion............ There is not a similar site for AMN, it has not been in trial as long and there are not as many people on it yet. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Thanks for that , Tim is trying to get me on the AMN trial. He hasn't mentioned to me about the BMS at all. Ive only heard about this drug through the postings here and listening to other people on this site. I asked Tim the other day about this drug and he said that it is even harder to get on that one, as i think its even newer here in Australia. I was looking into what it was like and side effects and wondering if other people were on it but Tim didnt give me much hope that it would be for me..so in mean time im still waiting to hear if i can receive the AMN drug. He is waiting for a notification from USA to see if they will allow it. Thanks again. SUSIE LEECH DX NOV 2002 CURRENTLY OFF GLEEVEC #675 ZERO CLUB Quote Link to comment Share on other sites More sharing options...
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