Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Sharon: I have been on 800 mg as a standard dose from the beginning and while it takes some adjustments, my PCR has been undetectable after 60 days on that dosage. I know that my doctor is studying the efficacy of lowering the dose to 600 mg after after you reach PCRU, but he is not willing to recommend it or allow me to lower the dosage. Matt Florida In a message dated 6/24/2008 8:18:56 P.M. Eastern Daylight Time, onthewtr@... writes: I am so so dissapointed. I have been on Tasigna for 113 days with absolutely no side effects except a little weight gain. IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on Sprycel but had to go off because of PE. Well I just got my results of my latest PCR and it was 0.032 so the Dr. wants to increase my medication. I am ow taking 400 a day and he wanted to go to 800mg a day. I talked him into 600 a day. what do you think???? I am just so dissapointed. I have never felt so well, strong and healthy in 5 years. Why is this happening???Why is this happening???<WBR>While on Sprycel off it. Please let me know y our thoughts.oh mylog reduction is 2.111 it was 2.575 before. Sharon T **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Sharon, PCR values can fluctuate up and down. Mine always do. It is very likely that your next test will show your levels lower than your first test. Try not to worry. Let your doctors continue to monitor you and feel well. Enjoy feeling well adn don't get too caught up in the numbers. They do go up and down and over the years fussing about the minor variations can drive you nuts! Hang in there. I am sure it's just a blip! Hugs! Genie Dx 2,2000 on 800mg Gleevec daily > > I am so so dissapointed. I have been on Tasigna for 113 days with > absolutely no side effects except a little weight gain. > IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on > Sprycel but had to go off because of PE. Well I just got my results of > my latest PCR and it was 0.032 so the Dr. wants to increase my > medication. I am ow taking 400 a day and he wanted to go to 800mg a > day. I talked him into 600 a day. what do you think???? I am just so > dissapointed. I have never felt so well, strong and healthy in 5 years. > Why is this happening???While on Sprycel I was PCRU until I had to go > off it. Please let me know y our thoughts.oh mylog reduction is 2.111 > it was 2.575 before. > Sharon T > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Hi Sharon, I'm not sure what the fuss is here. To me, your results look very stable. There is at least a half log variation due to the margin of error with PCR results and your two results are within that margin of error. I understand how you would want to be at a 3 log reduction so you may in deed benefit from the increase in dose but I certainly wouldn't panic over these results. Take care, Tracey > > I am so so dissapointed. I have been on Tasigna for 113 days with > absolutely no side effects except a little weight gain. > IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on > Sprycel but had to go off because of PE. Well I just got my results of > my latest PCR and it was 0.032 so the Dr. wants to increase my > medication. I am ow taking 400 a day and he wanted to go to 800mg a > day. I talked him into 600 a day. what do you think???? I am just so > dissapointed. I have never felt so well, strong and healthy in 5 years. > Why is this happening???While on Sprycel I was PCRU until I had to go > off it. Please let me know y our thoughts.oh mylog reduction is 2.111 > it was 2.575 before. > Sharon T > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Dear Genie and Tracey Already I feel better. It just gets me down. I don't even want to go on 600mg. I am so afraid of side effects. I had my share with gleevec and then sprycel. But we will see. I am going away for 6 days to be with my two sisters whom I have not seen in4 year and we are meeting in Palm Springs. I was so looking forward to a O% so I could celebrate but what the heck I am still going to celebrate feeling good. I asked the dr. if I could start the 600mg when I got back and he said sure!!! So that is what I am doing. Thank you so much. I love all of you so so much Sharon T _____ From: [mailto: ] On Behalf Of Tracey Sent: Tuesday, June 24, 2008 5:33 PM Subject: [ ] Re: my PCR Hi Sharon, I'm not sure what the fuss is here. To me, your results look very stable. There is at least a half log variation due to the margin of error with PCR results and your two results are within that margin of error. I understand how you would want to be at a 3 log reduction so you may in deed benefit from the increase in dose but I certainly wouldn't panic over these results. Take care, Tracey > > I am so so dissapointed. I have been on Tasigna for 113 days with > absolutely no side effects except a little weight gain. > IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on > Sprycel but had to go off because of PE. Well I just got my results of > my latest PCR and it was 0.032 so the Dr. wants to increase my > medication. I am ow taking 400 a day and he wanted to go to 800mg a > day. I talked him into 600 a day. what do you think???? I am just so > dissapointed. I have never felt so well, strong and healthy in 5 years. > Why is this happening???While on Sprycel I was PCRU until I had to go > off it. Please let me know y our thoughts.oh mylog reduction is 2.111 > it was 2.575 before. > Sharon T > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Sharon if you do need to go on 600 or 800 mg, I am wondering if since your body is used to the tasigna, maybe it won't react so strongly as someone who would go on the full 800 at the beginning. At any rate, I would agree with Tracey. The stats are no reason for panic... Be well, Barb in AZ > > > > I am so so dissapointed. I have been on Tasigna for 113 days with > > absolutely no side effects except a little weight gain. > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had > been on > > Sprycel but had to go off because of PE. Well I just got my results > of > > my latest PCR and it was 0.032 so the Dr. wants to increase my > > medication. I am ow taking 400 a day and he wanted to go to 800mg a > > day. I talked him into 600 a day. what do you think???? I am just > so > > dissapointed. I have never felt so well, strong and healthy in 5 > years. > > Why is this happening???While on Sprycel I was PCRU until I had to > go > > off it. Please let me know y our thoughts.oh mylog reduction is > 2.111 > > it was 2.575 before. > > Sharon T > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Dear Sharon, Please don't get hung up on the zero, very few of us are actually zero. A good goal to have is a 3 log reduction but PCRU or zero on a PCR may be an unrealistic and unnecessary goal. Enjoy your time with your sisters! Tracey > > > > I am so so dissapointed. I have been on Tasigna for 113 days with > > absolutely no side effects except a little weight gain. > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had > been on > > Sprycel but had to go off because of PE. Well I just got my results > of > > my latest PCR and it was 0.032 so the Dr. wants to increase my > > medication. I am ow taking 400 a day and he wanted to go to 800mg a > > day. I talked him into 600 a day. what do you think???? I am just > so > > dissapointed. I have never felt so well, strong and healthy in 5 > years. > > Why is this happening???While on Sprycel I was PCRU until I had to > go > > off it. Please let me know y our thoughts.oh mylog reduction is > 2.111 > > it was 2.575 before. > > Sharon T > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Barb What do you mean? That maybe it would take my body longer to get into PCRU with 400??? Do you think I should increase it to 600 or 800? Sharon T _____ From: [mailto: ] On Behalf Of Barb Stanley Sent: Tuesday, June 24, 2008 6:14 PM Subject: [ ] Re: my PCR Sharon if you do need to go on 600 or 800 mg, I am wondering if since your body is used to the tasigna, maybe it won't react so strongly as someone who would go on the full 800 at the beginning. At any rate, I would agree with Tracey. The stats are no reason for panic... Be well, Barb in AZ > > > > I am so so dissapointed. I have been on Tasigna for 113 days with > > absolutely no side effects except a little weight gain. > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had > been on > > Sprycel but had to go off because of PE. Well I just got my results > of > > my latest PCR and it was 0.032 so the Dr. wants to increase my > > medication. I am ow taking 400 a day and he wanted to go to 800mg a > > day. I talked him into 600 a day. what do you think???? I am just > so > > dissapointed. I have never felt so well, strong and healthy in 5 > years. > > Why is this happening???While on Sprycel I was PCRU until I had to > go > > off it. Please let me know y our thoughts.oh mylog reduction is > 2.111 > > it was 2.575 before. > > Sharon T > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Thanks Tracey. I guess it is because while I was on Sprycell I was at 0 for a long time.I was on Sprycel for three years. Maybe it is just going to take longer I did not like the word the Dr. used. He said they were afraid to keep me on 400mg because they were afraid of me becoming resistant to the medication. Sharon T _____ From: [mailto: ] On Behalf Of Tracey Sent: Tuesday, June 24, 2008 6:16 PM Subject: [ ] Re: my PCR Dear Sharon, Please don't get hung up on the zero, very few of us are actually zero. A good goal to have is a 3 log reduction but PCRU or zero on a PCR may be an unrealistic and unnecessary goal. Enjoy your time with your sisters! Tracey > > > > I am so so dissapointed. I have been on Tasigna for 113 days with > > absolutely no side effects except a little weight gain. > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had > been on > > Sprycel but had to go off because of PE. Well I just got my results > of > > my latest PCR and it was 0.032 so the Dr. wants to increase my > > medication. I am ow taking 400 a day and he wanted to go to 800mg a > > day. I talked him into 600 a day. what do you think???? I am just > so > > dissapointed. I have never felt so well, strong and healthy in 5 > years. > > Why is this happening???While on Sprycel I was PCRU until I had to > go > > off it. Please let me know y our thoughts.oh mylog reduction is > 2.111 > > it was 2.575 before. > > Sharon T > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 And Matt are your side effects bad? I know we chatted before. I may have to go up to 800 but for now we will try 600. Hope that works. Thanks Matt for the support. Sharon _____ From: [mailto: ] On Behalf Of mtmaynor@... Sent: Tuesday, June 24, 2008 8:17 PM Subject: Re: [ ] my PCR Sharon: I have been on 800 mg as a standard dose from the beginning and while it takes some adjustments, my PCR has been undetectable after 60 days on that dosage. I know that my doctor is studying the efficacy of lowering the dose to 600 mg after after you reach PCRU, but he is not willing to recommend it or allow me to lower the dosage. Matt Florida In a message dated 6/24/2008 8:18:56 P.M. Eastern Daylight Time, onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net writes: I am so so dissapointed. I have been on Tasigna for 113 days with absolutely no side effects except a little weight gain. IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on Sprycel but had to go off because of PE. Well I just got my results of my latest PCR and it was 0.032 so the Dr. wants to increase my medication. I am ow taking 400 a day and he wanted to go to 800mg a day. I talked him into 600 a day. what do you think???? I am just so dissapointed. I have never felt so well, strong and healthy in 5 years. Why is this happening???Why is this happening???<WBR>While on Sprycel off it. Please let me know y our thoughts.oh mylog reduction is 2.111 it was 2.575 before. Sharon T **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos. <http://autos.aol.com/used?ncid=aolaut00050000000007> aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Sharon: My side effects are nothing like they were on Gleevec. On Gleevec, I had a lot of GI issues, which have disappeared while on Tasigna. I do have some constipation, but that is alleviated with twice daily rounds of Metamucil. And while there is the occassional bone pain and fatigue, they are much less than before. Like most drugs, it does take a period of time to get used to it. Matt Florida In a message dated 6/25/2008 2:28:37 A.M. Eastern Daylight Time, onthewtr@... writes: And Matt are your side effects bad? I know we chatted before. I may have to go up to 800 but for now we will try 600. Hope that works. Thanks Matt for the support. Sharon **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Sharon, Sorry for the confusion. I can see how you thought that. I was responding to your fear of greater side effects. I meant that if you have to increase the tasigna, your body is already used to the drug. It would be my hope that the side effects would not jump out at you and increase in intensity. I did not mean to refer to the PCRU. I have no idea about how long it would take you. I began on tasigna Dec. 27- 2007. They started me at 800 mg. Within two weeks I had to go off because of severe side effects. I took a 5 day break, then went back on at 400. I had some slight side effects for about two weeks and now, I have NONE. So I was hoping that if you need to increase, and do it slowly, maybe the side effects will not be so severe. My best wishes to you as your and your onc try your best for dosage. And of course, I wish PCRU for you and everyone. Be well dear Sharon, my fellow tasi buddy!! Barb in AZ > > > > > > I am so so dissapointed. I have been on Tasigna for 113 days with > > > absolutely no side effects except a little weight gain. > > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had > > been on > > > Sprycel but had to go off because of PE. Well I just got my results > > of > > > my latest PCR and it was 0.032 so the Dr. wants to increase my > > > medication. I am ow taking 400 a day and he wanted to go to 800mg a > > > day. I talked him into 600 a day. what do you think???? I am just > > so > > > dissapointed. I have never felt so well, strong and healthy in 5 > > years. > > > Why is this happening???While on Sprycel I was PCRU until I had to > > go > > > off it. Please let me know y our thoughts.oh mylog reduction is > > 2.111 > > > it was 2.575 before. > > > Sharon T > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Thank you Barb in AZ You are very helpful. Yes I am hoping that taking another 200 wont bother me too much. I will keep in touch. Sharon T _____ From: [mailto: ] On Behalf Of Barb Stanley Sent: Wednesday, June 25, 2008 6:01 AM Subject: [ ] Re: my PCR Sharon, Sorry for the confusion. I can see how you thought that. I was responding to your fear of greater side effects. I meant that if you have to increase the tasigna, your body is already used to the drug. It would be my hope that the side effects would not jump out at you and increase in intensity. I did not mean to refer to the PCRU. I have no idea about how long it would take you. I began on tasigna Dec. 27- 2007. They started me at 800 mg. Within two weeks I had to go off because of severe side effects. I took a 5 day break, then went back on at 400. I had some slight side effects for about two weeks and now, I have NONE. So I was hoping that if you need to increase, and do it slowly, maybe the side effects will not be so severe. My best wishes to you as your and your onc try your best for dosage. And of course, I wish PCRU for you and everyone. Be well dear Sharon, my fellow tasi buddy!! Barb in AZ > > > > > > I am so so dissapointed. I have been on Tasigna for 113 days with > > > absolutely no side effects except a little weight gain. > > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had > > been on > > > Sprycel but had to go off because of PE. Well I just got my results > > of > > > my latest PCR and it was 0.032 so the Dr. wants to increase my > > > medication. I am ow taking 400 a day and he wanted to go to 800mg a > > > day. I talked him into 600 a day. what do you think???? I am just > > so > > > dissapointed. I have never felt so well, strong and healthy in 5 > > years. > > > Why is this happening???While on Sprycel I was PCRU until I had to > > go > > > off it. Please let me know y our thoughts.oh mylog reduction is > > 2.111 > > > it was 2.575 before. > > > Sharon T > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2008 Report Share Posted June 25, 2008 Yes Matt that is why I am so afraid of side effects. Mine were horrible on Gleevec ant then later on on Sprycel. I totally understand the problem with the GI issues. Mine were terrible on Glevec and Sprycel and I just had to adjust. But Constipation has never been a problem for me-never so maybe it wont do that to me. And bone pain? I can live with. Thanks Matt and I will keep in touch. Sharon _____ From: [mailto: ] On Behalf Of mtmaynor@... Sent: Wednesday, June 25, 2008 6:13 AM Subject: Re: [ ] my PCR Sharon: My side effects are nothing like they were on Gleevec. On Gleevec, I had a lot of GI issues, which have disappeared while on Tasigna. I do have some constipation, but that is alleviated with twice daily rounds of Metamucil. And while there is the occassional bone pain and fatigue, they are much less than before. Like most drugs, it does take a period of time to get used to it. Matt Florida In a message dated 6/25/2008 2:28:37 A.M. Eastern Daylight Time, onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net writes: And Matt are your side effects bad? I know we chatted before. I may have to go up to 800 but for now we will try 600. Hope that works. Thanks Matt for the support. Sharon **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos. <http://autos.aol.com/used?ncid=aolaut00050000000007> aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
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