Guest guest Posted March 20, 2008 Report Share Posted March 20, 2008 Hello all I am amazed at all the new tasigna folks. I thought I was in the minority and now see that this is pretty common even though the drug was approved a slight 4 months ago. I must say that it has been such a good thing for me and I am hoping it proves a good option for others as well. I am so glad to be posting here and hearing all these good things. Barb > : > > I too go to Moffit and I too will be there on Thursday of this week > for my annual BMB. I have not been thrilled with their labs, but > overall I am thrilled with my oncologist and the amount of time > he spends with me and the information he gives and receives. > He is always eager to share the latest information and to listen > to what I have to say. > > I too started Tasigna last November and after the initial adjustment > think it is better for me than Gleevec was for the three years I was > on it. > > I hope it goes well for you. > > Matt > ville, FL > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol\ hom00030000000001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 I also think we need to begin to test and come up with options that alleviate some of the more common side effects, like the pioneers did for us with Gleevec. Maybe we could email outside of the board and come up with something that we could have Zavie and Tracey read and possible send out with new patients who start Tasigna, much like they do with the newbies on CML. (Welcome to the club that no one wants to be a member....) I am also aware that there are now studies to make Tasigna a first line medication, instead of one that is used for people who fail or do not tolerate Gleevec. Matt Florida In a message dated 3/21/2008 7:06:22 P.M. Eastern Daylight Time, utfin93@... writes: I'm really glad we're getting a little group together here myself! Good luck to all! I'll keep posting as well as things change/or don't change. Rick **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 I'm really glad we're getting a little group together here myself! Good luck to all! I'll keep posting as well as things change/or don't change. Rick Barb Stanley <barbarastanley@...> wrote: Hello all I am amazed at all the new tasigna folks. I thought I was in the minority and now see that this is pretty common even though the drug was approved a slight 4 months ago. I must say that it has been such a good thing for me and I am hoping it proves a good option for others as well. I am so glad to be posting here and hearing all these good things. Barb > : > > I too go to Moffit and I too will be there on Thursday of this week > for my annual BMB. I have not been thrilled with their labs, but > overall I am thrilled with my oncologist and the amount of time > he spends with me and the information he gives and receives. > He is always eager to share the latest information and to listen > to what I have to say. > > I too started Tasigna last November and after the initial adjustment > think it is better for me than Gleevec was for the three years I was > on it. > > I hope it goes well for you. > > Matt > ville, FL > > **************Create a Home Theater Like the Pros. Watch the video on AOL > Home. > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol\ hom00030000000001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Hi All What I want to know is Sprycel and Tasagna both came out at the same time. Sprycel was from Bristol Meyers and Tasagna is from Novartis. I was on Sprycel for 1 to 2 years before it was FDA approved. I was in a study when I was on it. I want to know if and what the difference between these two are??? Why do some go right from gleevec to Tasigna and others (like me) from gleevec to Sprycel to Tasagna. I wonder why my Dr. chose to have me take Sprycel instead of Tasagna? They were both out when I went to Sprycel. Not FDA approved. I have been on it now for 10 days. The only thing I find is---I am full of energy in the morning (very chatty) and then as the day goes on I get tireder and tireder and my legs and muscles ache. Especially in the legs. But I know this will pass. Sharon _____ From: [mailto: ] On Behalf Of mtmaynor@... Sent: Friday, March 21, 2008 4:13 PM Subject: Re: [ ] Tasigna patients I also think we need to begin to test and come up with options that alleviate some of the more common side effects, like the pioneers did for us with Gleevec. Maybe we could email outside of the board and come up with something that we could have Zavie and Tracey read and possible send out with new patients who start Tasigna, much like they do with the newbies on CML. (Welcome to the club that no one wants to be a member....) I am also aware that there are now studies to make Tasigna a first line medication, instead of one that is used for people who fail or do not tolerate Gleevec. Matt Florida In a message dated 3/21/2008 7:06:22 P.M. Eastern Daylight Time, utfin93 (DOT) <mailto:utfin93%40> com writes: I'm really glad we're getting a little group together here myself! Good luck to all! I'll keep posting as well as things change/or don't change. Rick **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home. <http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom0 0030000000001> aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Rick I know one person with the name Olds. Any relatives in Arizona? Barb > > : > > > > I too go to Moffit and I too will be there on Thursday of this week > > for my annual BMB. I have not been thrilled with their labs, but > > overall I am thrilled with my oncologist and the amount of time > > he spends with me and the information he gives and receives. > > He is always eager to share the latest information and to listen > > to what I have to say. > > > > I too started Tasigna last November and after the initial adjustment > > think it is better for me than Gleevec was for the three years I was > > on it. > > > > I hope it goes well for you. > > > > Matt > > ville, FL > > > > **************Create a Home Theater Like the Pros. Watch the video on > AOL > > Home. > > > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol\ \ > hom00030000000001) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 It is still in trial here in Canada I have been on it for over a year. Tasigna has been good for me, although I am not responding to anything. I need transfusions of Hgb at least twice month and most weeks I received platelets on Monday and Thursday. This has been going on now for over 6 months. I must admit I feel ok and except for the time spent in receiving these infusions I live pretty much a good life except when my ANC is down below 500. SkipD DX 30 ++ years ago --- Rick Olds <utfin93@...> wrote: > I'm really glad we're getting a little group > together here myself! Good luck to all! I'll keep > posting as well as things change/or don't change. > Rick > > Barb Stanley <barbarastanley@...> wrote: > > Hello all > > I am amazed at all the new tasigna folks. I thought > I was in the > minority and now see that this is pretty common even > though the drug was > approved a slight 4 months ago. I must say that it > has been such a good > thing for me and I am hoping it proves a good option > for others as well. > > I am so glad to be posting here and hearing all > these good things. > > Barb > > > > : > > > > I too go to Moffit and I too will be there on > Thursday of this week > > for my annual BMB. I have not been thrilled with > their labs, but > > overall I am thrilled with my oncologist and the > amount of time > > he spends with me and the information he gives and > receives. > > He is always eager to share the latest information > and to listen > > to what I have to say. > > > > I too started Tasigna last November and after the > initial adjustment > > think it is better for me than Gleevec was for the > three years I was > > on it. > > > > I hope it goes well for you. > > > > Matt > > ville, FL > > > > **************Create a Home Theater Like the Pros. > Watch the video on > AOL > > Home. > > > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol\ > hom00030000000001) > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > --------------------------------- > > Never miss a thing. Make your homepage. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Search. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 _________________________________________________________________ Send a smile, make someone laugh, have some fun! Start now! http://g.msn.ca/ca55/208 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Why why why does this medication affect every one so differently???? We all have the same body parts. That really bothers me. A diabetic takes insulin and that helps him. It helps all diabetics. Sharon _____ From: [mailto: ] On Behalf Of Skip Duffie Sent: Saturday, March 22, 2008 1:35 AM Subject: Re: [ ] Tasigna patients It is still in trial here in Canada I have been on it for over a year. Tasigna has been good for me, although I am not responding to anything. I need transfusions of Hgb at least twice month and most weeks I received platelets on Monday and Thursday. This has been going on now for over 6 months. I must admit I feel ok and except for the time spent in receiving these infusions I live pretty much a good life except when my ANC is down below 500. SkipD DX 30 ++ years ago --- Rick Olds <utfin93 (DOT) <mailto:utfin93%40> com> wrote: > I'm really glad we're getting a little group > together here myself! Good luck to all! I'll keep > posting as well as things change/or don't change. > Rick > > Barb Stanley <barbarastanley@ <mailto:barbarastanley%40cox.net> cox.net> wrote: > > Hello all > > I am amazed at all the new tasigna folks. I thought > I was in the > minority and now see that this is pretty common even > though the drug was > approved a slight 4 months ago. I must say that it > has been such a good > thing for me and I am hoping it proves a good option > for others as well. > > I am so glad to be posting here and hearing all > these good things. > > Barb > > > > : > > > > I too go to Moffit and I too will be there on > Thursday of this week > > for my annual BMB. I have not been thrilled with > their labs, but > > overall I am thrilled with my oncologist and the > amount of time > > he spends with me and the information he gives and > receives. > > He is always eager to share the latest information > and to listen > > to what I have to say. > > > > I too started Tasigna last November and after the > initial adjustment > > think it is better for me than Gleevec was for the > three years I was > > on it. > > > > I hope it goes well for you. > > > > Matt > > ville, FL > > > > **************Create a Home Theater Like the Pros. > Watch the video on > AOL > > Home. > > > (http://home. <http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol> aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol\ > hom00030000000001) > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > --------------------------------- > > Never miss a thing. Make your homepage. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them > fast with Search. > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Never miss a thing. Make your home page. http://www.. <http://www./r/hs> com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Hi Sharon, Yes we all have the same body parts but our body parts don't always work the same. If everything was the same in everybody, we'd all be robots. Some people metabolize things differently, some people tolerate things that others don't, hormone levels are different in everyone etc. There are lots of variations between us. The same can be said for just about any illness or drug. Why do some people get relief from a headache with just one Advil while someone else needs 2 or 3. Why do some people get drunk after one glass of wine while others need a gallon of it. Even insulin isn't a 'one size fits all' for diabetics. There are different types of diabetic medications and different people need different doses. I guess this is just part of what makes us all unique. Tracey > > Why why why does this medication affect every one so differently???? We all > have the same body parts. > > That really bothers me. A diabetic takes insulin and that helps him. It > helps all diabetics. > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 I know Tracey-but I get so frustrated when I read about how some of us are suffering so much and going through all these side affects. I feel so fortunate. But I am sure I will eventually have some affects on Tasigna also. I had bad ones on Gleevec but not on Sprycel, until after three years. That is what is so upsetting to me. You think you are doing so well and boom!!! It hits you one day. Darn I wish they would find us a cure. But in the meantime I think I should thank God that I have what I have. I remember when my Dr. told me I had Leukemia I started to cry and said when am I going to die and he looked at me and said " Sharon you are one of the lucky ones-they just came out with a new medication to control it " I felt like someone had given me a million dollars (although I would have preferred to hear that there was a cure " I should be so so thankful, and I am, that I am or was PCRU until I stopped Sprycel for a month then it went up to 0.011 but I know and the Doctors tell me by looking at my blood counts that Tasi will work for me to. It is the side affects that will get me. I am a fighter and I think very very positive and try to live a healthy life-I will do everything I can to help myself and maybe I'll be with Tasi for a long long time. We will all fight and we will all Stay healthy!!!!! Sharon _____ From: [mailto: ] On Behalf Of Tracey Sent: Saturday, March 22, 2008 7:22 AM Subject: Re: [ ] Tasigna patients Hi Sharon, Yes we all have the same body parts but our body parts don't always work the same. If everything was the same in everybody, we'd all be robots. Some people metabolize things differently, some people tolerate things that others don't, hormone levels are different in everyone etc. There are lots of variations between us. The same can be said for just about any illness or drug. Why do some people get relief from a headache with just one Advil while someone else needs 2 or 3. Why do some people get drunk after one glass of wine while others need a gallon of it. Even insulin isn't a 'one size fits all' for diabetics. There are different types of diabetic medications and different people need different doses. I guess this is just part of what makes us all unique. Tracey > > Why why why does this medication affect every one so differently???? We all > have the same body parts. > > That really bothers me. A diabetic takes insulin and that helps him. It > helps all diabetics. > > Sharon > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Not that I'm aware of Barb Stanley <barbarastanley@...> wrote: Rick I know one person with the name Olds. Any relatives in Arizona? Barb > > : > > > > I too go to Moffit and I too will be there on Thursday of this week > > for my annual BMB. I have not been thrilled with their labs, but > > overall I am thrilled with my oncologist and the amount of time > > he spends with me and the information he gives and receives. > > He is always eager to share the latest information and to listen > > to what I have to say. > > > > I too started Tasigna last November and after the initial adjustment > > think it is better for me than Gleevec was for the three years I was > > on it. > > > > I hope it goes well for you. > > > > Matt > > ville, FL > > > > **************Create a Home Theater Like the Pros. Watch the video on > AOL > > Home. > > > (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aol\ \ > hom00030000000001) > > > > Quote Link to comment Share on other sites More sharing options...
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