Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Hi , The answer is yes. I believe that there is minimum risk for an important gain ... your quality of life. Good luck, Zavie Zavie (age 71) 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of Rosen Lum Sent: February-10-10 9:57 PM Subject: [ ] Possible switch to Tasigna I saw my doc today and he proposed switching from Sprycel to Tasigna. My labs look good, but I'm sleeping my life away. I am out for much of the afternoon and wake up feeling flu-ish, although that passes after a half hour or so. I also have been getting more bone pain, persistent headaches, and other stuff that is a nuisance but certainly bearable. I used to get terrible depression with Gleevec, but that hasn't been a problem at all with Sprycel, so it's been a huge improvement! I certainly would look forward to trimming down the number of hours I spend out like a light. I also would be thrilled to clear some of this mental " fog. " But that prolonged QT syndrome thing has me scared stiff. I was hoping to stick around for at least 10 more years and maybe even 30! (I'm 59). So I ask ... is the risk worth getting back a better quality of life? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Oh, Zavie. I can't tell you how meaningful these words are to me! Thanks a million. Gratefully, On Wed, Feb 10, 2010 at 8:40 PM, Zavie <zmiller@...> wrote: > > > Hi , > > The answer is yes. > > I believe that there is minimum risk for an important gain ... your quality > of life. > > Good luck, > > Zavie > > > Zavie (age 71) > 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 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > Tel in FL: 561-429-5507 > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of > Rosen Lum > Sent: February-10-10 9:57 PM > <%40> > Subject: [ ] Possible switch to Tasigna > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > My labs look good, but I'm sleeping my life away. I am out for much of the > afternoon and wake up feeling flu-ish, although that passes after a half > hour or so. I also have been getting more bone pain, persistent headaches, > and other stuff that is a nuisance but certainly bearable. I used to get > terrible depression with Gleevec, but that hasn't been a problem at all > with > Sprycel, so it's been a huge improvement! > > I certainly would look forward to trimming down the number of hours I spend > out like a light. I also would be thrilled to clear some of this mental > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > hoping to stick around for at least 10 more years and maybe even 30! (I'm > 59). > > So I ask ... is the risk worth getting back a better quality of life? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 , I have not had a QT problem and I have been on Tasigna for two years. My quality of life is 100% better on Tasigna then Sprycel. I am normal. _____ From: [mailto: ] On Behalf Of Rosen Lum Sent: Wednesday, February 10, 2010 6:57 PM Subject: [ ] Possible switch to Tasigna I saw my doc today and he proposed switching from Sprycel to Tasigna. My labs look good, but I'm sleeping my life away. I am out for much of the afternoon and wake up feeling flu-ish, although that passes after a half hour or so. I also have been getting more bone pain, persistent headaches, and other stuff that is a nuisance but certainly bearable. I used to get terrible depression with Gleevec, but that hasn't been a problem at all with Sprycel, so it's been a huge improvement! I certainly would look forward to trimming down the number of hours I spend out like a light. I also would be thrilled to clear some of this mental " fog. " But that prolonged QT syndrome thing has me scared stiff. I was hoping to stick around for at least 10 more years and maybe even 30! (I'm 59). So I ask ... is the risk worth getting back a better quality of life? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Bless your heart. Wow -- literally. Thanks, Sharon! On Wed, Feb 10, 2010 at 9:58 PM, Sharon Teichera <onthewtr@...>wrote: > > > , > > I have not had a QT problem and I have been on Tasigna for two years. My > quality of life is 100% better on Tasigna then Sprycel. > > I am normal. > > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of > Rosen Lum > Sent: Wednesday, February 10, 2010 6:57 PM > > <%40> > Subject: [ ] Possible switch to Tasigna > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > My labs look good, but I'm sleeping my life away. I am out for much of the > afternoon and wake up feeling flu-ish, although that passes after a half > hour or so. I also have been getting more bone pain, persistent headaches, > and other stuff that is a nuisance but certainly bearable. I used to get > terrible depression with Gleevec, but that hasn't been a problem at all > with > Sprycel, so it's been a huge improvement! > > I certainly would look forward to trimming down the number of hours I spend > out like a light. I also would be thrilled to clear some of this mental > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > hoping to stick around for at least 10 more years and maybe even 30! (I'm > 59). > > So I ask ... is the risk worth getting back a better quality of life? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 , Im on sprycel and while i do need more sleep now than prior to CML, what i need now compared to the first year on sprycel is much less. Im two+ years in taking sprycel and i feel MUCH better in the last 6 months than the prior year. Drink lots of water and go to bed early. Hang ing and it may get better. The brain fog is better too! R Sent from my Verizon Wireless BlackBerry [ ] Possible switch to Tasigna > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > My labs look good, but I'm sleeping my life away. I am out for much of the > afternoon and wake up feeling flu-ish, although that passes after a half > hour or so. I also have been getting more bone pain, persistent headaches, > and other stuff that is a nuisance but certainly bearable. I used to get > terrible depression with Gleevec, but that hasn't been a problem at all > with > Sprycel, so it's been a huge improvement! > > I certainly would look forward to trimming down the number of hours I spend > out like a light. I also would be thrilled to clear some of this mental > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > hoping to stick around for at least 10 more years and maybe even 30! (I'm > 59). > > So I ask ... is the risk worth getting back a better quality of life? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2010 Report Share Posted February 11, 2010 Wow. That is sure food for thought. Thanks! On Thu, Feb 11, 2010 at 7:26 AM, <Sionito@...> wrote: > > > , > Im on sprycel and while i do need more sleep now than prior to CML, what i > need now compared to the first year on sprycel is much less. > > Im two+ years in taking sprycel and i feel MUCH better in the last 6 months > than the prior year. > > Drink lots of water and go to bed early. Hang ing and it may get better. > The brain fog is better too! > R > Sent from my Verizon Wireless BlackBerry > > [ ] Possible switch to Tasigna > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of > the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent > headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Hi , QOL is soooo important which is why I swapped to Tasigna in Aug 2008. Life is so much better than when I was on Glivec. The only downsides to Tasigna is the fasting twice a day and insomnia which can be a pain at times as I can still be wired at 1am or later. I do get fatigued at times, but the good plus was I was able to lose 8kg within several months of ceasing Glivec. I've had several ECGs and no problems with the QT prolongation (the last a month ago). I certainly plan on being here another 20 years + at only 52 years old to enjoy all my gorgeous current grand children and those to come! Regards, #1149 Zavies Zero Club Dx: 25/07/07 Commenced Glivec 400mg 27/9/07 Changed to Tasigna 800mg 3/8/08 PCRs: 23/01/08 - 13.01 % 14/04/08 - 0.08 % 12/05/08 - 0.02% (Glivec 200mg) 06/08/08 - 0.09 % (commenced Tasigna) 30/09/08 - 0.18 % 19/12/08 - 0.00% 30/09/09 - 0.000% [ ] Possible switch to Tasigna > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > My labs look good, but I'm sleeping my life away. I am out for much of the > afternoon and wake up feeling flu-ish, although that passes after a half > hour or so. I also have been getting more bone pain, persistent headaches, > and other stuff that is a nuisance but certainly bearable. I used to get > terrible depression with Gleevec, but that hasn't been a problem at all > with > Sprycel, so it's been a huge improvement! > > I certainly would look forward to trimming down the number of hours I spend > out like a light. I also would be thrilled to clear some of this mental > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > hoping to stick around for at least 10 more years and maybe even 30! (I'm > 59). > > So I ask ... is the risk worth getting back a better quality of life? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Holy Toledo. That sounds great. How often do you get the ECGs? On Thu, Feb 11, 2010 at 4:54 PM, Malseed <rodorbal@...>wrote: > > > Hi , > > QOL is soooo important which is why I swapped to Tasigna in Aug 2008. Life > is so much better than when I was on Glivec. The only downsides to Tasigna > is the fasting twice a day and insomnia which can be a pain at times as I > can still be wired at 1am or later. I do get fatigued at times, but the > good > plus was I was able to lose 8kg within several months of ceasing Glivec. > I've had several ECGs and no problems with the QT prolongation (the last a > month ago). I certainly plan on being here another 20 years + at only 52 > years old to enjoy all my gorgeous current grand children and those to > come! > > Regards, > > > > #1149 Zavies Zero Club > Dx: 25/07/07 > Commenced Glivec 400mg 27/9/07 > Changed to Tasigna 800mg 3/8/08 > PCRs: > 23/01/08 - 13.01 % > 14/04/08 - 0.08 % > 12/05/08 - 0.02% (Glivec 200mg) > 06/08/08 - 0.09 % (commenced Tasigna) > 30/09/08 - 0.18 % > 19/12/08 - 0.00% > 30/09/09 - 0.000% > > > [ ] Possible switch to Tasigna > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of > the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent > headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 , I got 2 done initially prior to commencement and 2 weeks after commencement of Tasigna and then the recent one. I think it is good to get annual ECGs to keep a check on how things are going - more peace of mind stuff really. It is recommended if dose is changed that an ECG is done also. I've been on the standard 800mg right the way through. Regards, [ ] Possible switch to Tasigna > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of > the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent > headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 and I are both doing great on Tasigna. I tho--gained weight but am working on getting it off. I have no sleep problems at all but at times I do get tired. Usually in the late afternoon. Just when it is time to get dinner going. I have the QT test (EKG) done every 2 to 3 months. It only take a few minutes. I too hope to be around for many more years I turned 67 yesterday and I have 13 grandchildren and a couple more coming. I truly love Tasigna and it has changed my life. I was DX almost 6 years ago. Sharon [ ] Possible switch to Tasigna > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of > the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent > headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 did you read the article I posted last week where a study has been done and it has been decided that 600mg is a new amt to start with. If not let me know and I can send it to you.. I started on 400mg two years ago and within 3 weeks they upped me to 600 and I was PCRU within two weeks. Amazing drug. Sharon _____ From: [mailto: ] On Behalf Of Malseed Sent: Thursday, February 11, 2010 5:25 PM Subject: RE: [ ] Possible switch to Tasigna , I got 2 done initially prior to commencement and 2 weeks after commencement of Tasigna and then the recent one. I think it is good to get annual ECGs to keep a check on how things are going - more peace of mind stuff really. It is recommended if dose is changed that an ECG is done also. I've been on the standard 800mg right the way through. Regards, [ ] Possible switch to Tasigna > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of > the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent > headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 How you do all manage the fasting requirement? I so seldom plan meals, tend to be more of a " grazer. " Does an " empty stomach " mean no coffee? On Thu, Feb 11, 2010 at 5:28 PM, Sharon Teichera <onthewtr@...>wrote: > > > did you read the article I posted last week where a study has been > done and it has been decided that 600mg is a new amt to start with. If not > let me know and I can send it to you.. > > I started on 400mg two years ago and within 3 weeks they upped me to 600 > and > I was PCRU within two weeks. Amazing drug. > > Sharon > > _____ > > From: <%40> [mailto: > <%40>] On Behalf Of > Malseed > Sent: Thursday, February 11, 2010 5:25 PM > <%40> > Subject: RE: [ ] Possible switch to Tasigna > > > , > > I got 2 done initially prior to commencement and 2 weeks after commencement > of Tasigna and then the recent one. I think it is good to get annual ECGs > to > keep a check on how things are going - more peace of mind stuff really. It > is recommended if dose is changed that an ECG is done also. I've been on > the > standard 800mg right the way through. > > Regards, > > > > [ ] Possible switch to Tasigna > > > > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > > > My labs look good, but I'm sleeping my life away. I am out for much of > > the > > > afternoon and wake up feeling flu-ish, although that passes after a > half > > > hour or so. I also have been getting more bone pain, persistent > > headaches, > > > and other stuff that is a nuisance but certainly bearable. I used to > get > > > terrible depression with Gleevec, but that hasn't been a problem at all > > > with > > > Sprycel, so it's been a huge improvement! > > > > > > I certainly would look forward to trimming down the number of hours I > > spend > > > out like a light. I also would be thrilled to clear some of this mental > > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > > hoping to stick around for at least 10 more years and maybe even 30! > (I'm > > > 59). > > > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Ill tell you how I do it. My husband and I have recently started Juicing so my schedule changed. But I will tell u how I used to do it. I would usually get up about 7 or 8am. I would immediately have coffee. (I am addicted to coffee and must have it first thing in the AM) so I would have about 2 to 3 cups of coffee then I would wait about one to two hours and take my pill. (probably abt 9am) then an hour later I would eat something. Then no fasting till later at night. I would stop grazing about 8pm and before I went to bed (abt 11:30) I would take my other 2 pills.and go to sleep. Taking the pills and laying down has never bothered me at all. BUT now that we juice. I get up have my coffee then we juice then I wait two to two and a half hours and I take my pill--somewhere around 11:30. the Juicing is my breakfast. Then around 12:30 -- lpm I have lunch then again the same nite routine. This has worked for me very very well. I am a grazer too and many times I catch myself stuffing some little thing in my mouth and remembering and having to spit it out. LOL!!! When I first got on Tasigna I would wake myself up at 5:30am and take my pills and go back to bed but I got tired of that real quick. Do whatever is good for your schedule. No one has actually said no coffee but I don't take the chance. The only thing I have when fasting is water. It really is not that bad considering our alternative... Good luck sharon [ ] Possible switch to Tasigna > > > > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > > > My labs look good, but I'm sleeping my life away. I am out for much of > > the > > > afternoon and wake up feeling flu-ish, although that passes after a > half > > > hour or so. I also have been getting more bone pain, persistent > > headaches, > > > and other stuff that is a nuisance but certainly bearable. I used to > get > > > terrible depression with Gleevec, but that hasn't been a problem at all > > > with > > > Sprycel, so it's been a huge improvement! > > > > > > I certainly would look forward to trimming down the number of hours I > > spend > > > out like a light. I also would be thrilled to clear some of this mental > > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > > hoping to stick around for at least 10 more years and maybe even 30! > (I'm > > > 59). > > > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 Well that doesn't sound so bad! I thought I'd starve! On Fri, Feb 12, 2010 at 10:27 AM, Sharon Teichera <onthewtr@...>wrote: > > > Ill tell you how I do it. > > My husband and I have recently started Juicing so my schedule changed. But > I > will tell u how I used to do it. I would usually get up about 7 or 8am. I > would immediately have coffee. (I am addicted to coffee and must have it > first thing in the AM) so I would have about 2 to 3 cups of coffee then I > would wait about one to two hours and take my pill. (probably abt 9am) then > an hour later I would eat something. Then no fasting till later at night. > I would stop grazing about 8pm and before I went to bed (abt 11:30) I would > take my other 2 pills.and go to sleep. Taking the pills and laying down > has never bothered me at all. > > BUT now that we juice. I get up have my coffee then we juice then I wait > two > to two and a half hours and I take my pill--somewhere around 11:30. the > Juicing is my breakfast. Then around 12:30 -- lpm I have lunch then again > the same nite routine. > > This has worked for me very very well. > I am a grazer too and many times I catch myself stuffing some little thing > in my mouth and remembering and having to spit it out. LOL!!! > > When I first got on Tasigna I would wake myself up at 5:30am and take my > pills and go back to bed but I got tired of that real quick. > > Do whatever is good for your schedule. > No one has actually said no coffee but I don't take the chance. The only > thing I have when fasting is water. It really is not that bad considering > our alternative... > > Good luck > sharon > > > [ ] Possible switch to Tasigna > > > > > > > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > > > > > My labs look good, but I'm sleeping my life away. I am out for much > of > > > the > > > > afternoon and wake up feeling flu-ish, although that passes after a > > half > > > > hour or so. I also have been getting more bone pain, persistent > > > headaches, > > > > and other stuff that is a nuisance but certainly bearable. I used to > > get > > > > terrible depression with Gleevec, but that hasn't been a problem at > all > > > > with > > > > Sprycel, so it's been a huge improvement! > > > > > > > > I certainly would look forward to trimming down the number of hours I > > > spend > > > > out like a light. I also would be thrilled to clear some of this > mental > > > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I > was > > > > hoping to stick around for at least 10 more years and maybe even 30! > > (I'm > > > > 59). > > > > > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2010 Report Share Posted February 12, 2010 You are so cute!!!! No you will not starve!! I promise. The times that I have to fast are usually times that I do not eat anyway. Sharon [ ] Possible switch to Tasigna > > > > > > > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > > > > > My labs look good, but I'm sleeping my life away. I am out for much > of > > > the > > > > afternoon and wake up feeling flu-ish, although that passes after a > > half > > > > hour or so. I also have been getting more bone pain, persistent > > > headaches, > > > > and other stuff that is a nuisance but certainly bearable. I used to > > get > > > > terrible depression with Gleevec, but that hasn't been a problem at > all > > > > with > > > > Sprycel, so it's been a huge improvement! > > > > > > > > I certainly would look forward to trimming down the number of hours I > > > spend > > > > out like a light. I also would be thrilled to clear some of this > mental > > > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I > was > > > > hoping to stick around for at least 10 more years and maybe even 30! > > (I'm > > > > 59). > > > > > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2010 Report Share Posted February 14, 2010 what is QO T Sent from my Verizon Wireless BlackBerry [ ] Possible switch to Tasigna > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > My labs look good, but I'm sleeping my life away. I am out for much of the > afternoon and wake up feeling flu-ish, although that passes after a half > hour or so. I also have been getting more bone pain, persistent headaches, > and other stuff that is a nuisance but certainly bearable. I used to get > terrible depression with Gleevec, but that hasn't been a problem at all > with > Sprycel, so it's been a huge improvement! > > I certainly would look forward to trimming down the number of hours I spend > out like a light. I also would be thrilled to clear some of this mental > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > hoping to stick around for at least 10 more years and maybe even 30! (I'm > 59). > > So I ask ... is the risk worth getting back a better quality of life? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2010 Report Share Posted February 14, 2010 QOL = Quality Of Life Zavie (age 71) 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of mtadros9@... Sent: February-13-10 8:32 PM Subject: Re: [ ] Possible switch to Tasigna what is QO T Sent from my Verizon Wireless BlackBerry [ ] Possible switch to Tasigna > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > My labs look good, but I'm sleeping my life away. I am out for much of the > afternoon and wake up feeling flu-ish, although that passes after a half > hour or so. I also have been getting more bone pain, persistent headaches, > and other stuff that is a nuisance but certainly bearable. I used to get > terrible depression with Gleevec, but that hasn't been a problem at all > with > Sprycel, so it's been a huge improvement! > > I certainly would look forward to trimming down the number of hours I spend > out like a light. I also would be thrilled to clear some of this mental > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > hoping to stick around for at least 10 more years and maybe even 30! (I'm > 59). > > So I ask ... is the risk worth getting back a better quality of life? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 I switched to Tasigna Oct 2008 and it's a whole new life for me. I had all the Gleevec side effects, was really tired of feeling lousey all the time. Didn't do much for my mental state either, the " fog " makes it difficult to feel like yourself. The good news is that thge fog lifted almost immediately after stopping gleevec - and never came back. Neither did any of thye other side effects I was experiencing, too numerous to mention. Tasigna did cause a scalp rash that took a while to subside. Tolerable, very mild now. And becuase of QT prolongation, I had regular ekg's for almost a year as a precaution. Also be aware that some other meds also can contribute to QT prolongatiom, so make sure you review your prescriptions while taking Tasigna. Tasigna also is much more effective for me clinically. I never reached CCR on Gleevec for 6 yrs,even at higher doses. Tasigna did the trick for me in 3 months! Biggest downside if the fasting. I take first does when I wake up and wait an hour for breakfast. Yes, I take it with coffee, no juice, or maybe some Lipton tea. I fast from 3-5PM, take thye second does before leaving work and nhave dinner at 6. Works for me, just keep to the schedule. So, this has been the best year since I was diagnosed in 2002. Tasigna has made then difference and I'm not looking back... >...rb I would seriously consider the switch > > > > > > > Hi , > > > > The answer is yes. > > > > I believe that there is minimum risk for an important gain ... your > quality > > of life. > > > > Good luck, > > > > Zavie > > > > > > Zavie (age 71) > > 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 > > e-mail: zmiller@ > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > Tel in FL: 561-429-5507 > > > > _____ > > > > From: <%40> [mailto: > > <%40>] On Behalf Of > > Rosen Lum > > Sent: February-10-10 9:57 PM > > <%40> > > Subject: [ ] Possible switch to Tasigna > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 Well you can't beat a a ringing endorsement like that. The fog! I'm so SICK of the fog! I can't remember the simplest things and I could sleep 24 hours if I let myself (OK, 23 1/2 with potty breaks, lol). I am fast developing the confidence to plunge ahead! On Sun, Feb 14, 2010 at 9:29 PM, bvision49 <bvision49@...> wrote: > > > I switched to Tasigna Oct 2008 and it's a whole new life for me. I had all > the Gleevec side effects, was really tired of feeling lousey all the time. > Didn't do much for my mental state either, the " fog " makes it difficult to > feel like yourself. > > The good news is that thge fog lifted almost immediately after stopping > gleevec - and never came back. Neither did any of thye other side effects I > was experiencing, too numerous to mention. > > Tasigna did cause a scalp rash that took a while to subside. Tolerable, > very mild now. And becuase of QT prolongation, I had regular ekg's for > almost a year as a precaution. Also be aware that some other meds also can > contribute to QT prolongatiom, so make sure you review your prescriptions > while taking Tasigna. > > Tasigna also is much more effective for me clinically. I never reached CCR > on Gleevec for 6 yrs,even at higher doses. Tasigna did the trick for me in 3 > months! > > Biggest downside if the fasting. I take first does when I wake up and wait > an hour for breakfast. Yes, I take it with coffee, no juice, or maybe some > Lipton tea. I fast from 3-5PM, take thye second does before leaving work and > nhave dinner at 6. Works for me, just keep to the schedule. > > So, this has been the best year since I was diagnosed in 2002. Tasigna has > made then difference and I'm not looking back... > > >...rb > > I would seriously consider the switch > > > > > > > > > > > > > Hi , > > > > > > The answer is yes. > > > > > > I believe that there is minimum risk for an important gain ... your > > quality > > > of life. > > > > > > Good luck, > > > > > > Zavie > > > > > > > > > Zavie (age 71) > > > 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 > > > e-mail: zmiller@ > > > Tel: 613-726-1117 > > > Fax: 613-482-4801 > > > Cell: 613-282-0204 > > > ID: zaviem > > > Tel in FL: 561-429-5507 > > > > > > _____ > > > > > > From: <%40> <% > 40> [mailto: > > > <%40> <%40>] > On Behalf Of > > > Rosen Lum > > > Sent: February-10-10 9:57 PM > > > <%40> <% > 40> > > > Subject: [ ] Possible switch to Tasigna > > > > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > > > My labs look good, but I'm sleeping my life away. I am out for much of > the > > > afternoon and wake up feeling flu-ish, although that passes after a > half > > > hour or so. I also have been getting more bone pain, persistent > headaches, > > > and other stuff that is a nuisance but certainly bearable. I used to > get > > > terrible depression with Gleevec, but that hasn't been a problem at all > > > with > > > Sprycel, so it's been a huge improvement! > > > > > > I certainly would look forward to trimming down the number of hours I > > spend > > > out like a light. I also would be thrilled to clear some of this mental > > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > > hoping to stick around for at least 10 more years and maybe even 30! > (I'm > > > 59). > > > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2010 Report Share Posted February 15, 2010 I experience the same with Tasigna as you do.. I am so so happy to be on it. Gleevec ans sprycel were not a good experience for me. I only hope that it lasts a long time Bless you Sharon _____ From: [mailto: ] On Behalf Of bvision49 Sent: Sunday, February 14, 2010 9:29 PM Subject: Re: [ ] Possible switch to Tasigna I switched to Tasigna Oct 2008 and it's a whole new life for me. I had all the Gleevec side effects, was really tired of feeling lousey all the time. Didn't do much for my mental state either, the " fog " makes it difficult to feel like yourself. The good news is that thge fog lifted almost immediately after stopping gleevec - and never came back. Neither did any of thye other side effects I was experiencing, too numerous to mention. Tasigna did cause a scalp rash that took a while to subside. Tolerable, very mild now. And becuase of QT prolongation, I had regular ekg's for almost a year as a precaution. Also be aware that some other meds also can contribute to QT prolongatiom, so make sure you review your prescriptions while taking Tasigna. Tasigna also is much more effective for me clinically. I never reached CCR on Gleevec for 6 yrs,even at higher doses. Tasigna did the trick for me in 3 months! Biggest downside if the fasting. I take first does when I wake up and wait an hour for breakfast. Yes, I take it with coffee, no juice, or maybe some Lipton tea. I fast from 3-5PM, take thye second does before leaving work and nhave dinner at 6. Works for me, just keep to the schedule. So, this has been the best year since I was diagnosed in 2002. Tasigna has made then difference and I'm not looking back... >...rb I would seriously consider the switch > > > > > > > Hi , > > > > The answer is yes. > > > > I believe that there is minimum risk for an important gain ... your > quality > > of life. > > > > Good luck, > > > > Zavie > > > > > > Zavie (age 71) > > 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 > > e-mail: zmiller@ > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > Tel in FL: 561-429-5507 > > > > _____ > > > > From: groups (DOT) <mailto:%40> com <%40> [mailto: > > groups (DOT) <mailto:%40> com <%40>] On Behalf Of > > Rosen Lum > > Sent: February-10-10 9:57 PM > > groups (DOT) <mailto:%40> com <%40> > > Subject: [ ] Possible switch to Tasigna > > > > > > I saw my doc today and he proposed switching from Sprycel to Tasigna. > > > > My labs look good, but I'm sleeping my life away. I am out for much of the > > afternoon and wake up feeling flu-ish, although that passes after a half > > hour or so. I also have been getting more bone pain, persistent headaches, > > and other stuff that is a nuisance but certainly bearable. I used to get > > terrible depression with Gleevec, but that hasn't been a problem at all > > with > > Sprycel, so it's been a huge improvement! > > > > I certainly would look forward to trimming down the number of hours I > spend > > out like a light. I also would be thrilled to clear some of this mental > > " fog. " But that prolonged QT syndrome thing has me scared stiff. I was > > hoping to stick around for at least 10 more years and maybe even 30! (I'm > > 59). > > > > So I ask ... is the risk worth getting back a better quality of life? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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