Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Hi Nanc and Lottie! I responded to Lottie privately but felt that I should post to share my Tasigna experience. I had been on Gleevec for the past 6 years and had many frustrating side effects (nausea, diarrhea, bone pain, weight gain) - so with my dr. at MD and my local oncologist - I decided to switch to Tasigna. For the first few weeks, I had no side effects and was very excited. However, I did develop pretty significant tremors and shakes - especially in my hands. I also felt like I had balance issues (dizziness). At the time, MD and Novartis said they had not heard of this side effect. However, I did alert Novartis to it .. . . as well as the significant hair loss I had. In January - I had a pcr - and found out I lost some ground - so I went back on Gleevec. ly - without the shaking and hair loss - I found Tasigna incredibly easier to handle. Especially not to have to run to the bathroom constantly! The hair loss and tremors did me in though and I threw in the towel. Fortunately, the tremors have stopped. My primary care dr. believes that the Tasigna slightly damaged the myelin that coats the nerves in the brain. And he felt that it would take 6 months and I'd find it would resolve. And it did. I am curious now that Lottie is having tremor issues on Tasigna - is anyone else on the drug experiencing tremors and shakes? Also - anyone experience hair loss? Hugs to all. I don't post much anymore - but I still do read the postings - and keep everyone in good thoughts! Barb Most sincerely, Barbara Heathcote I just started Tasigna last Thursday on a low dose until my body adjusts to it. My side effects are itching in the worst way, but no rash appears. The other which has alarmed me is the tremors. I can barely hold anything in my hands I shake so much. I also have leg cramps in the sides of my legs and feet. If my feet are propped up, they begin to turn inward and there is nothing I can do to stop it, but jump up and walk around. Also, I don't like the 3 hr. period when you have to fast, that's when my desire to eat is the strongest. __________________________ Hi Lottie, I had a really bad itch (horrible) but also a little rash when I started Tasi. I was on Benedryl even if it made me sleeply, also the other over the counter stuff........and I soaked in the tub a lot which I think you said you can't do. My itch was there for a few weeks. About the tremors....do you know Barb Heathcote? I think she had them and maybe even went off Tasi because of it????? she posts some, but I don't'know if she reads all the time, so you might e-mail her directly. Let me know if you don't already have her address. Yes, the fasting you have to get used to......as soon as someone says you can't eat, that is when I want to eat.....I am also a grazer. Eventually you work out a schedule that fits your eating pattern best. Hope things get better quickly. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2010 Report Share Posted August 15, 2010 Did the doc happen to say what caused the dizziness? Sometimes I get a little worried I'm going to take a nose dive in public when the dizziness hits! :-( That would be mighty embarrassing. On Sat, Aug 14, 2010 at 6:53 PM, Barbara Heathcote <bheath@...> wrote: > > > Hi Nanc and Lottie! I responded to Lottie privately but felt that I should > post to share my Tasigna experience. I had been on Gleevec for the past 6 > years and had many frustrating side effects (nausea, diarrhea, bone pain, > weight gain) - so with my dr. at MD and my local oncologist - I > decided to switch to Tasigna. For the first few weeks, I had no side > effects and was very excited. However, I did develop pretty significant > tremors and shakes - especially in my hands. I also felt like I had > balance issues (dizziness). At the time, MD and Novartis said > they had not heard of this side effect. However, I did alert Novartis to it > . . . as well as the significant hair loss I had. In January - I had > a pcr - and found out I lost some ground - so I went back on Gleevec. > > ly - without the shaking and hair loss - I found Tasigna incredibly > easier to handle. Especially not to have to run to the bathroom > constantly! The hair loss and tremors did me in though and I threw in > the towel. Fortunately, the tremors have stopped. My primary care dr. > believes that the Tasigna slightly damaged the myelin that coats the nerves > in the brain. And he felt that it would take 6 months and I'd find it > would resolve. And it did. > > I am curious now that Lottie is having tremor issues on Tasigna - is anyone > else on the drug experiencing tremors and shakes? Also - anyone > experience hair loss? > > Hugs to all. I don't post much anymore - but I still do read the postings > - and keep everyone in good thoughts! > > Barb > > Most sincerely, > > Barbara Heathcote > > I just started Tasigna last Thursday on a low dose until my body adjusts to > it. My side effects are itching in the worst way, but no rash appears. The > other which has alarmed me is the tremors. I can barely hold anything in my > hands I shake so much. I also have leg cramps in the sides of my legs and > feet. If my feet are propped up, they begin to turn inward and there is > nothing I can do to stop it, but jump up and walk around. Also, I don't > like > the 3 hr. period when you have to fast, that's when my desire to eat is the > strongest. > > __________________________ > Hi Lottie, > > I had a really bad itch (horrible) but also a little rash when I started > Tasi. I was on Benedryl even if it made me sleeply, also the other over the > counter stuff........and I soaked in the tub a lot which I think you said > you can't do. My itch was there for a few weeks. > > About the tremors....do you know Barb Heathcote? I think she had them and > maybe even went off Tasi because of it????? she posts some, but I > don't'know > if she reads all the time, so you might e-mail her directly. Let me know if > you don't already have her address. > > Yes, the fasting you have to get used to......as soon as someone says you > can't eat, that is when I want to eat.....I am also a grazer. Eventually > you > work out a schedule that fits your eating pattern best. > > Hope things get better quickly. > C. > > Quote Link to comment Share on other sites More sharing options...
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