Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 In a message dated 1/25/2007 9:10:27 P.M. Eastern Standard Time, skipd_2002@... writes: have been on AMN107 for about 2 months, it is too early to tell. In my case that is. My Doctor is hopeful I feel good and according to others look good but I am receiving treatment for low counts twice week Dear Skip, thanks for stepping up and telling us about AMN. I am very interested in going on this drug. How did you get it? Where are you treated and are you on trial? - Lynne A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 At 05:47 PM 1/26/07 -0500, you wrote: >Dear Skip, thanks for stepping up and telling us about AMN. I am very >interested in going on this drug. How did you get it? Where are you >treated and >are you on trial? - Lynne A. Hi Lynne, Just to give you an answer to your question.......AMN is not an approved drug yet, so you can only get it in a trial.........but there has been talk that it should be approved early this year??? It is also a Novartis drug.....so you could ask Novartis where the trial are. I think they have opened up a lot of them. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 I am on a trial it is not for general use just yet, I do not appear to have any side effects I did when first on it and ended up in the hospital for about a week I needed transfusions and still need them but that is not amn107 that is my CML I have had CML longer than most people still alive and only started Gleevec about 2 years ago but had difficulty and now am on AMN107(Nilotinib) I am very lucky I have a great doctor and am treated at the VG site in Halifax Nova Scotia. I do not think you can just go on it as it is still in trials but go here and see http://www.amn107.com/index.jsp I started out on 800mg a day but had to reduce it to 400 a day but hope to get back to the 800 a day and give the transfusions a rest... If I can answer any more questions I will be glad to but as of now I am still under investigation and do not wish to discourage anyone with side effect etc ' SkipD DX'ed 1978 yes 1978 was on Mylerand for 26 of those years was on hydroxurea for six months was on gleevec for approx 6 months now on Nilotinib for approx 2 months --- MoonQn1@... wrote: > > In a message dated 1/25/2007 9:10:27 P.M. Eastern > Standard Time, > skipd_2002@... writes: > > have been on AMN107 for about 2 months, it is too > early to tell. In my case that is. My Doctor is > hopeful I feel good and according to others look > good > but I am receiving treatment for low counts twice > week > > > > Dear Skip, thanks for stepping up and telling us > about AMN. I am very > interested in going on this drug. How did you get > it? Where are you treated and > are you on trial? - Lynne A. > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ The fish are biting. Get more visitors on your site using Search Marketing. http://searchmarketing./arp/sponsoredsearch_v2.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Hey Skip, Thank you for your mail because it really made me feel better. You inspired me. If you can make it why cant we? Now there is better treatments and new medications on the way. Are you a excepsion or are there people lives for long years with CML like you? Do you have any advices or experiences to share with us? And may be its a silly question but what is Mylerand and why dont we use it if it works that well? Yusuf Skip Duffie <skipd_2002@...> wrote: I am on a trial it is not for general use just yet, I do not appear to have any side effects I did when first on it and ended up in the hospital for about a week I needed transfusions and still need them but that is not amn107 that is my CML I have had CML longer than most people still alive and only started Gleevec about 2 years ago but had difficulty and now am on AMN107(Nilotinib) I am very lucky I have a great doctor and am treated at the VG site in Halifax Nova Scotia. I do not think you can just go on it as it is still in trials but go here and see http://www.amn107.com/index.jsp I started out on 800mg a day but had to reduce it to 400 a day but hope to get back to the 800 a day and give the transfusions a rest... If I can answer any more questions I will be glad to but as of now I am still under investigation and do not wish to discourage anyone with side effect etc ' SkipD DX'ed 1978 yes 1978 was on Mylerand for 26 of those years was on hydroxurea for six months was on gleevec for approx 6 months now on Nilotinib for approx 2 months --- MoonQn1@... wrote: > > In a message dated 1/25/2007 9:10:27 P.M. Eastern > Standard Time, > skipd_2002@... writes: > > have been on AMN107 for about 2 months, it is too > early to tell. In my case that is. My Doctor is > hopeful I feel good and according to others look > good > but I am receiving treatment for low counts twice > week > > > > Dear Skip, thanks for stepping up and telling us > about AMN. I am very > interested in going on this drug. How did you get > it? Where are you treated and > are you on trial? - Lynne A. > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ The fish are biting. Get more visitors on your site using Search Marketing. http://searchmarketing./arp/sponsoredsearch_v2.php --------------------------------- The fish are biting. Get more visitors on your site using Search Marketing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Yusuf thanks for the kind words. I cannot give any advice except I lived my life like I did not have CML, I never had too many doctors until lately, no experts until lately, Just a GP who knew less about CML than I do. But he learned. I have a strong belief that things will work out for the best, and whatever God you believe in is a merciful GOD and will not give more than we can take. I try to eat healthy, never smoke or drink not for any other reason than I did not like the taste. The drug Myleran (Busulfan)was given about two three times a year for 26 years. I never had a problem. I would not go on Myleran until my wbc was in excess of 80,000 and would go off it when my count was around 30,000 it had a lasting effect.. But to answer your question I had nothing to do with my survival, it was out of my hands. I was given 2 months to 2years for survival and the doctors who said that are now a lot older and a lot greyer. I guess it was just that I kept working and never looked at how I felt on one day or the next just how I felt over the year. My only hope is that you all in beat my 29 years of survival and that you all feel as good as I do. That is not only my hope but my prayer. ' SkipD DX'ed 1978 yes 1978 was on Mylerand for 26 of those years was on hydroxurea for six months was on gleevec for approx 6 months now on Nilotinib for approx 2 months --- yusuf ÿffffe7ipe <cipeyusuf@...> wrote: > Hey Skip, > > Thank you for your mail because it really made me > feel better. You inspired me. If you can make it why > cant we? Now there is better treatments and new > medications on the way. > > Are you a excepsion or are there people lives for > long years with CML like you? Do you have any > advices or experiences to share with us? And may be > its a silly question but what is Mylerand and why > dont we use it if it works that well? > > Yusuf > > Skip Duffie <skipd_2002@...> wrote: > I am on a trial it is not for general use > just yet, > I do not appear to have any side effects I did when > first on it and ended up in the hospital for about a > week I needed transfusions and still need them but > that is not amn107 that is my CML I have had CML > longer than most people still alive and only started > Gleevec about 2 years ago but had difficulty and now > am on AMN107(Nilotinib) I am very lucky I have a > great > doctor and am treated at the VG site in Halifax Nova > Scotia. I do not think you can just go on it as it > is > still in trials but go here and see > http://www.amn107.com/index.jsp > > I started out on 800mg a day but had to reduce it to > 400 a day but hope to get back to the 800 a day and > give the transfusions a rest... > If I can answer any more questions I will be glad to > but as of now I am still under investigation and do > not wish to discourage anyone with side effect etc > ' > SkipD > DX'ed 1978 yes 1978 > was on Mylerand for 26 of those years > was on hydroxurea for six months > was on gleevec for approx 6 months > now on Nilotinib for approx 2 months > > --- MoonQn1@... wrote: > > > > > In a message dated 1/25/2007 9:10:27 P.M. Eastern > > Standard Time, > > skipd_2002@... writes: > > > > have been on AMN107 for about 2 months, it is too > > early to tell. In my case that is. My Doctor is > > hopeful I feel good and according to others look > > good > > but I am receiving treatment for low counts twice > > week > > > > > > > > Dear Skip, thanks for stepping up and telling us > > about AMN. I am very > > interested in going on this drug. How did you get > > it? Where are you treated and > > are you on trial? - Lynne A. > > > > > > [Non-text portions of this message have been > > removed] > > > > > > __________________________________________________________ > The fish are biting. > Get more visitors on your site using Search > Marketing. > http://searchmarketing./arp/sponsoredsearch_v2.php > > > > > > --------------------------------- > The fish are biting. > Get more visitors on your site using Search > Marketing. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ It's here! Your new message! Get new email alerts with the free Toolbar. http://tools.search./toolbar/features/mail/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Skip, Amazing, hopefull story! Just what I was looking for when I signed up with this group! Keep on Rocking in the free world! How about another 30 years! I hope we can all tell a story like yours!! Chris --- Skip Duffie <skipd_2002@...> wrote: > Yusuf thanks for the kind words. > I cannot give any advice except I lived my life > like I did not have CML, I never had too many > doctors > until lately, no experts until lately, Just a GP who > knew less about CML than I do. But he learned. I > have a strong belief that things will work out for > the > best, and whatever God you believe in is a merciful > GOD and will not give more than we can take. > I try to eat healthy, never smoke or drink not for > any > other reason than I did not like the taste. The > drug > Myleran (Busulfan)was given about two three times a > year for 26 years. I never had a problem. I would > not > go on Myleran until my wbc was in excess of 80,000 > and > would go off it when my count was around 30,000 it > had > a lasting effect.. But to answer your question I had > nothing to do with my survival, it was out of my > hands. I was given 2 months to 2years for survival > and the doctors who said that are now a lot older > and > a lot greyer. I guess it was just that I kept > working > and never looked at how I felt on one day or the > next > just how I felt over the year. > My only hope is that you all in beat my 29 > years > of survival and that you all feel as good as I do. > That is not only my hope but my prayer. > ' > SkipD > DX'ed 1978 yes 1978 > was on Mylerand for 26 of those years > was on hydroxurea for six months > was on gleevec for approx 6 months > now on Nilotinib for approx 2 months > > --- yusuf ÿffffe7ipe <cipeyusuf@...> wrote: > > > Hey Skip, > > > > Thank you for your mail because it really made > me > > feel better. You inspired me. If you can make it > why > > cant we? Now there is better treatments and new > > medications on the way. > > > > Are you a excepsion or are there people lives > for > > long years with CML like you? Do you have any > > advices or experiences to share with us? And may > be > > its a silly question but what is Mylerand and why > > dont we use it if it works that well? > > > > Yusuf > > > > Skip Duffie <skipd_2002@...> wrote: > > I am on a trial it is not for general > use > > just yet, > > I do not appear to have any side effects I did > when > > first on it and ended up in the hospital for about > a > > week I needed transfusions and still need them but > > that is not amn107 that is my CML I have had CML > > longer than most people still alive and only > started > > Gleevec about 2 years ago but had difficulty and > now > > am on AMN107(Nilotinib) I am very lucky I have a > > great > > doctor and am treated at the VG site in Halifax > Nova > > Scotia. I do not think you can just go on it as it > > is > > still in trials but go here and see > > http://www.amn107.com/index.jsp > > > > I started out on 800mg a day but had to reduce it > to > > 400 a day but hope to get back to the 800 a day > and > > give the transfusions a rest... > > If I can answer any more questions I will be glad > to > > but as of now I am still under investigation and > do > > not wish to discourage anyone with side effect etc > > ' > > SkipD > > DX'ed 1978 yes 1978 > > was on Mylerand for 26 of those years > > was on hydroxurea for six months > > was on gleevec for approx 6 months > > now on Nilotinib for approx 2 months > > > > --- MoonQn1@... wrote: > > > > > > > > In a message dated 1/25/2007 9:10:27 P.M. > Eastern > > > Standard Time, > > > skipd_2002@... writes: > > > > > > have been on AMN107 for about 2 months, it is > too > > > early to tell. In my case that is. My Doctor is > > > hopeful I feel good and according to others look > > > > good > > > but I am receiving treatment for low counts > twice > > > week > > > > > > > > > > > > Dear Skip, thanks for stepping up and telling us > > > about AMN. I am very > > > interested in going on this drug. How did you > get > > > it? Where are you treated and > > > are you on trial? - Lynne A. > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > __________________________________________________________ > > The fish are biting. > > Get more visitors on your site using Search > > Marketing. > > > http://searchmarketing./arp/sponsoredsearch_v2.php > > > > > > > > > > > > --------------------------------- > > The fish are biting. > > Get more visitors on your site using > Search > > Marketing. > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > ________________________________________________________________________________\ ____ > It's here! Your new message! > Get new email alerts with the free Toolbar. > http://tools.search./toolbar/features/mail/ > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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