Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 not me but I tried talking my doctor into letting me go from 600mg of Tasigna down to 400mg. I have been pcru for almost three y ears. He said no!!! I would be very interested to see how fast he goes back to 0%---- please let us know. Sharon _____ From: [mailto: ] On Behalf Of tprovart Sent: Sunday, October 24, 2010 2:53 PM Subject: [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi Tammi, Has your doctor done a serum level test on Randy? If not, it might be a good idea just to know if he is getting sufficient Gleevec in his system to maintain PCRU. Zavie Zavie (age 72) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 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 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 4.4 log reduction Apr/10 4.3 log reduction Oct/10 e-mail: <mailto:zmiller@...> zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem From: [mailto: ] On Behalf Of tprovart Sent: October-24-10 5:53 PM Subject: [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi Zavie Can a serum level test be done on Tasigna? Sharon Sent via BlackBerry by AT & T [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi Sharon - unfortunately no serum tests for Tasi. But you know I only take 400mg one day and 600mg every second day and if no change in my PCR when I see my haematologist next month, I am going to push to try just 400mg a day, so will let you know! Cheers  -- [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Yeah I asked abt how u take it and he sent me a 5 page article about how it is suggested u not do that. I see him on the 4th. I would really like to do that.600 one day and 400 the next. There r many times that I miss my 200mg because I forget or for one reason or another and I am fine! He says no studies have been done. Sharon Sent via BlackBerry by AT & T [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2010 Report Share Posted October 24, 2010 Hi Sharon - I smiled when I read what your Dr said! What was the crux of the 5 page article? I guess this is why they have trials etc to test all these doses and they are learning all the time. I have a 28 year old friend in OZ who has been on Tasi nearly the same time as me and she is still not PCR. But I virtually became PCRU when I went onto Tasi and have been there for nearly 2 years with my molecular 0% increasing with each test. I think I am a good guinea pig in that even though I was only on Glivec for a relatively short time ~ 8 months with constant breaks due to side effects, I still had a fabulous response. I would like to give it a shot and if my PCR starts increasing, well it is easy to up the dose again. Thankfully my haematologist is prepared to listen and work with me and he also keeps in touch with our top CML specialist here (Dr Tim ). Cheers -- [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 I was told that if u drop your dosage and your % goes up on the. Lower dosage, it is harder to get back to that 0% something abt resistance to the medication. I don't know. You r a lot like me. On gleevec fo 9 months and responding well but had to stop because of side effects. On to sprycell then Tasi an got pcru within two weeks. With a 5. Log reduction. And have remained so for 2 yrs 8 month. I wish I knew the ans. Sharon Sent via BlackBerry by AT & T [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2010 Report Share Posted October 25, 2010 Hi my experience is the same - Haem comment when requested to go down to 400mg from 600mg There was no hesitation just a big NO !! and the disclaimer - we are on a winner with this dose - we are not changing it !! and guess what I AM ON A WINNING DOSE - even with all the side effects - have a great life That is because I am out there in the community spuiking CML and fund raising Cheers Sue (Aussie) __________ Information from ESET NOD32 Antivirus, version of virus signature database 5561 (20101025) __________ The message was checked by ESET NOD32 Antivirus. http://www.eset.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2010 Report Share Posted October 26, 2010 He has not had this done, but thanks for the suggestion! > > Hi Tammi, > > > > Has your doctor done a serum level test on Randy? If not, it might be a good > idea just to know if he is getting sufficient Gleevec in his system to > maintain PCRU. > > > > Zavie > > > > Zavie (age 72) > > 67 Shoreham Avenue > > Ottawa, Canada, K2G 3X3 > > 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 > > 2.8 log reduction Sep/05 > > 3.0 log reduction Jan/06 > > 2.9 log reduction Feb/07 > > 3.6 log reduction Apr/08 > > 3.6 log reduction Sep/08 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > 3.8 log reduction Aug/09 > > 4.0 log reduction Dec/09 > > 4.4 log reduction Apr/10 > > 4.3 log reduction Oct/10 > > e-mail: <mailto:zmiller@...> zmiller@... > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > > > From: [mailto: ] On Behalf Of > tprovart > Sent: October-24-10 5:53 PM > > Subject: [ ] increase in pcr > > > > > > My husband has been taking gleevec for 7 years. We quickly put him on 600 > mg, trying to get to zero quickly. He got to 0 and has been there for 6 > years. We discussed a lower dose with the doctor and decided to try 400 mg. > After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, > with more frequent PCRs. Has anyone else had a similar experience? > > Tammi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2010 Report Share Posted October 27, 2010 Hi Sharon - yes it is frustrating. My fellow Aussie Sue is still on high dose Glivec as she said and that her specialist refuses to lower her dose despite all the problems she has had. In Australia it is common for high dose Glivec to be given rather than the standard dose of 400mg. I guess resistance could be a problem, however considering that Tasigna is so much more potent than Glivec and that the dose for newly dx patients is now 600mg, who knows, that 400mg isn't a therapeutic dose in patients who have had an excellent response, given there are people out there who have not responded like us...........it's a pity there is no PK test yet for Tasigna. Another point is that the Sprycel dosage has also been reduced in a lot of patients due to the PE side effects from the original trial dose. Ah well, will discuss with my haematologist and see what he says. Cheers -- [ ] increase in pcr My husband has been taking gleevec for 7 years. We quickly put him on 600 mg, trying to get to zero quickly. He got to 0 and has been there for 6 years. We discussed a lower dose with the doctor and decided to try 400 mg. After a year on 400, his last PCR showed 0.8. He is starting back on 600mg, with more frequent PCRs. Has anyone else had a similar experience? Tammi Quote Link to comment Share on other sites More sharing options...
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