Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 My best to you and hope of hopes that your husband gets stable and secure in a good health position. thank God for family eh? I am hoping your PCR test shows tasi kicking butt!! Love Barb > > Hi to my fellow buddies, > > Well I have been on Tasi now for a couple of months and have been doing > really well on 800mg a day. I am due for my first PCR since commencement > in a couple of weeks which will be interesting. > > I think the only side effect I've had is occasional dizziness which is no > real problem and a few pins and needles in my hands. > > Matt - with the muscle cramps I have remained on Magnesium tabs since > swapping from Glivec to Tasigna and have no problems. I do notice if I > forget to take them and I will get a cramp in my (L) foot/lower leg. I > take 6 x 500mg tabs a day and has never given me diarrhoea as can do in > some people. > > I have been under a lot of stress in the past 4 weeks as my husband came > down with viral pneumonia and severe high blood pressure and had 4 days in > hospital. He still had severe balance problems and could only walk with a > wheelie walker (he is 55). I had 2 weeks home with him as he was incapable > of caring for himself. Our GP was querying a small stroke I then went back > to work as he had improved a lot. Then 2 days later he had a relapse and > after taking him to my GP and then onto a regional base hospital, it was > discovered after another CT scan that he has a rare disorder called > Lateral Medullary Syndrome caused by strokes in the medulla region of the > brain.......... I told him he was just trying to out do me in diagnosis > LOL. Seriously he could have had a major stroke at any time. He was then > sent on to one of our major teaching hospitals in Melb and I have been > with him since. Terible to see him stuck in bed hooked up to a miriad of > machines and drips. Today he had an angiogram which definitively showed a > blockage in a major cerebral artery and that he had quite a few small > strokes which luckily have been unblocked with heparin. He had been > complaining of lack of feeling in the (L) side of his face since his first > hospital admission - hosp did a CT scan and nothing else. Since having the > heparin he has got the feeling back in his face so is really positive. > > So he is now on the improve and I am his carer to boot - thank goodness I > am not on Glivec still as I don't think I could have coped with this. So > everything is up in the air and I hope we will be back home next week. > Fortunately I have my brother and sister in law to stay with who have > looked after me wonderfully and my kids at home who are looking after the > farm and my dogs etc. > > It just goes to show (luckily) that we never know what is around the corner! > > > Regards, > > from Down Under > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi Your side effects sound much more serious than mine. I am able to be on 400 mg effectively. I am really grateful. I hope they can find a dosage that works for you as well as improves your quality of life. Our old bodies are just not made for drugs.While I am grateful for the work they do, I am also frustrated with the effects of them as well.Given the outcome, I guess we are happy there even ARE drugs huh? Best of luck to you... Barb > > From: Barb Stanley <barbarastanley@...> > Subject: [ ] Tasigna Buddies > > Date: Sunday, September 21, 2008, 10:12 AM > > > > > > > Hello all you warriors! > I am curious, those of you on tasigna. I have been on 400 mg a day > since january. Until about a month ago, I felt like I was on a > honeymoon with the drug. I am beginning to experience muscle cramping > in my hands and feet. This is a first with the drug. In all the > reading I have done, I do not see where it is mentioned as a side > effect. I also take diazide for fluid build up around the knees, > joints and things. I do read that fluid retention is a side effect but > slight. If I don't take the diazide, I hurt. I am wondering if anyone > else on tasgina is having these side effects. I have been sooooo good > for soooo long and I am just a bit scared that those nasty side > effects I had with gleevec are going to return with Tasigna... > Anyone have any input? > Blessings on you all, > Barb > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Amen... That's my prayer for you too! Sounds like a rough time lately... And i should know with a hurricane, a dental emergency, the IRS, etc etc etc. You win sister! Get some rest and take your meds for god's sake! Peace, Rhonda Sent from my Verizon Wireless BlackBerry [ ] Re: tasigna buddies My best to you and hope of hopes that your husband gets stable and secure in a good health position. thank God for family eh? I am hoping your PCR test shows tasi kicking butt!! Love Barb > > Hi to my fellow buddies, > > Well I have been on Tasi now for a couple of months and have been doing > really well on 800mg a day. I am due for my first PCR since commencement > in a couple of weeks which will be interesting. > > I think the only side effect I've had is occasional dizziness which is no > real problem and a few pins and needles in my hands. > > Matt - with the muscle cramps I have remained on Magnesium tabs since > swapping from Glivec to Tasigna and have no problems. I do notice if I > forget to take them and I will get a cramp in my (L) foot/lower leg. I > take 6 x 500mg tabs a day and has never given me diarrhoea as can do in > some people. > > I have been under a lot of stress in the past 4 weeks as my husband came > down with viral pneumonia and severe high blood pressure and had 4 days in > hospital. He still had severe balance problems and could only walk with a > wheelie walker (he is 55). I had 2 weeks home with him as he was incapable > of caring for himself. Our GP was querying a small stroke I then went back > to work as he had improved a lot. Then 2 days later he had a relapse and > after taking him to my GP and then onto a regional base hospital, it was > discovered after another CT scan that he has a rare disorder called > Lateral Medullary Syndrome caused by strokes in the medulla region of the > brain.......... I told him he was just trying to out do me in diagnosis > LOL. Seriously he could have had a major stroke at any time. He was then > sent on to one of our major teaching hospitals in Melb and I have been > with him since. Terible to see him stuck in bed hooked up to a miriad of > machines and drips. Today he had an angiogram which definitively showed a > blockage in a major cerebral artery and that he had quite a few small > strokes which luckily have been unblocked with heparin. He had been > complaining of lack of feeling in the (L) side of his face since his first > hospital admission - hosp did a CT scan and nothing else. Since having the > heparin he has got the feeling back in his face so is really positive. > > So he is now on the improve and I am his carer to boot - thank goodness I > am not on Glivec still as I don't think I could have coped with this. So > everything is up in the air and I hope we will be back home next week. > Fortunately I have my brother and sister in law to stay with who have > looked after me wonderfully and my kids at home who are looking after the > farm and my dogs etc. > > It just goes to show (luckily) that we never know what is around the corner! > > > Regards, > > from Down Under > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hey Sharon, So sorry. I didn't mean to scare you. I am just an overly cautious person. You scare ME!! I do not want this weight gain to be anything but my need to eat 'comfort food " . I was hoping it was all stupid eating and not tasigna. I suspect though, that at least half of the 25 pounds I have gained is the drug. UGH! The thing that scares me about the drug is that gleevec took several years to get to the point of no return, and I am afraid that tasigna has started down that path. Let's think positively. Let's think that it will not do that. Sometimes positive thinking has so much power!! What is your PCR test results? We need to celebrate those!! Barb > > > y > > > > Dear Barb. > i have been on tasigna for 210 days and i have no side effects except > weight gain.i was so sorry to hear your latest news. that scares me so > much. I hope it will all pass for. I am doing so well with my test results > and just hope it will last. > take care and keep in touch > Aloha sharon > > > > > Hello all you warriors! > > I am curious, those of you on tasigna. I have been on 400 mg a day > > since january. Until about a month ago, I felt like I was on a > > honeymoon with the drug. I am beginning to experience muscle cramping > > in my hands and feet. This is a first with the drug. In all the > > reading I have done, I do not see where it is mentioned as a side > > effect. I also take diazide for fluid build up around the knees, > > joints and things. I do read that fluid retention is a side effect but > > slight. If I don't take the diazide, I hurt. I am wondering if anyone > > else on tasgina is having these side effects. I have been sooooo good > > for soooo long and I am just a bit scared that those nasty side > > effects I had with gleevec are going to return with Tasigna... > > Anyone have any input? > > Blessings on you all, > > Barb > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi Barb, I am quite surprised that you are doing so well on one/half the recommended dose. Good for you. From: Barb Stanley <barbarastanley@...> Subject: Re: [ ] Tasigna Buddies Date: Monday, September 22, 2008, 10:36 PM Hi Your side effects sound much more serious than mine. I am able to be on 400 mg effectively. I am really grateful. I hope they can find a dosage that works for you as well as improves your quality of life. Our old bodies are just not made for drugs.While I am grateful for the work they do, I am also frustrated with the effects of them as well.Given the outcome, I guess we are happy there even ARE drugs huh? Best of luck to you... Barb > > From: Barb Stanley <barbarastanley@ ...> > Subject: [ ] Tasigna Buddies > groups (DOT) com > Date: Sunday, September 21, 2008, 10:12 AM > > > > > > > Hello all you warriors! > I am curious, those of you on tasigna. I have been on 400 mg a day > since january. Until about a month ago, I felt like I was on a > honeymoon with the drug. I am beginning to experience muscle cramping > in my hands and feet. This is a first with the drug. In all the > reading I have done, I do not see where it is mentioned as a side > effect. I also take diazide for fluid build up around the knees, > joints and things. I do read that fluid retention is a side effect but > slight. If I don't take the diazide, I hurt. I am wondering if anyone > else on tasgina is having these side effects. I have been sooooo good > for soooo long and I am just a bit scared that those nasty side > effects I had with gleevec are going to return with Tasigna... > Anyone have any input? > Blessings on you all, > Barb > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 hi Barb, my pcr is 0% with a 5 log reduction. again it is the weight gain that bothers me. so far i have gained 15 lbs since being on Tasi!!! it bugs the heck out of me. i am starting to exercise and eat right and it is still not coming off!!! i guess i have to start harder. i was always a thin person. 105lbs. this really bugs me. but my husband says i should not be too concerned because it is keeping me healthy. although weight gain is not healty either. take care and keep in touch. Aloha Sharon > Hey Sharon, > So sorry. I didn't mean to scare you. I am just an overly cautious > person. You scare ME!! I do not want this weight gain to be > anything but my need to eat 'comfort food " . I was hoping it was all > stupid eating and not tasigna. I suspect though, that at least half > of the 25 pounds I have gained is the drug. UGH! > The thing that scares me about the drug is that gleevec took several > years to get to the point of no return, and I am afraid that tasigna > has started down that path. Let's think positively. Let's think that > it will not do that. Sometimes positive thinking has so much power!! > What is your PCR test results? We need to celebrate those!! > Barb > > >> >> > y >> >> >> >> Dear Barb. >> i have been on tasigna for 210 days and i have no side effects > except >> weight gain.i was so sorry to hear your latest news. that scares > me so >> much. I hope it will all pass for. I am doing so well with my test > results >> and just hope it will last. >> take care and keep in touch >> Aloha sharon >> >> >> >> >> Hello all you warriors! >> > I am curious, those of you on tasigna. I have been on 400 mg a > day >> > since january. Until about a month ago, I felt like I was on a >> > honeymoon with the drug. I am beginning to experience muscle > cramping >> > in my hands and feet. This is a first with the drug. In all the >> > reading I have done, I do not see where it is mentioned as a side >> > effect. I also take diazide for fluid build up around the knees, >> > joints and things. I do read that fluid retention is a side > effect but >> > slight. If I don't take the diazide, I hurt. I am wondering if > anyone >> > else on tasgina is having these side effects. I have been sooooo > good >> > for soooo long and I am just a bit scared that those nasty side >> > effects I had with gleevec are going to return with Tasigna... >> > Anyone have any input? >> > Blessings on you all, >> > Barb >> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 hi Barb, my pcr is 0% with a 5 log reduction. again it is the weight gain that bothers me. so far i have gained 15 lbs since being on Tasi!!! it bugs the heck out of me. i am starting to exercise and eat right and it is still not coming off!!! i guess i have to start harder. i was always a thin person. 105lbs. this really bugs me. but my husband says i should not be too concerned because it is keeping me healthy. although weight gain is not healty either. take care and keep in touch. Aloha Sharon > Hey Sharon, > So sorry. I didn't mean to scare you. I am just an overly cautious > person. You scare ME!! I do not want this weight gain to be > anything but my need to eat 'comfort food " . I was hoping it was all > stupid eating and not tasigna. I suspect though, that at least half > of the 25 pounds I have gained is the drug. UGH! > The thing that scares me about the drug is that gleevec took several > years to get to the point of no return, and I am afraid that tasigna > has started down that path. Let's think positively. Let's think that > it will not do that. Sometimes positive thinking has so much power!! > What is your PCR test results? We need to celebrate those!! > Barb > > >> >> > y >> >> >> >> Dear Barb. >> i have been on tasigna for 210 days and i have no side effects > except >> weight gain.i was so sorry to hear your latest news. that scares > me so >> much. I hope it will all pass for. I am doing so well with my test > results >> and just hope it will last. >> take care and keep in touch >> Aloha sharon >> >> >> >> >> Hello all you warriors! >> > I am curious, those of you on tasigna. I have been on 400 mg a > day >> > since january. Until about a month ago, I felt like I was on a >> > honeymoon with the drug. I am beginning to experience muscle > cramping >> > in my hands and feet. This is a first with the drug. In all the >> > reading I have done, I do not see where it is mentioned as a side >> > effect. I also take diazide for fluid build up around the knees, >> > joints and things. I do read that fluid retention is a side > effect but >> > slight. If I don't take the diazide, I hurt. I am wondering if > anyone >> > else on tasgina is having these side effects. I have been sooooo > good >> > for soooo long and I am just a bit scared that those nasty side >> > effects I had with gleevec are going to return with Tasigna... >> > Anyone have any input? >> > Blessings on you all, >> > Barb >> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
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