Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Hi Avis, I have been on Tasigna for 10 months now and fortunately never had any problems with my counts or with Glivec either. Certainly my QOL is far superior on Tasigna. How old is your cousin? That sounds awful re the chemical damage from the Aranesp? Women certainly have had problems with Glivec causing havoc with periods - is this what you mean by internal bleeding or from the bowel? I'm not sure re Tasigna. I only know one younger woman and she had problems when on Glivec, but she has not improved on Tasigna either and her RBC are constantly low. Regards, From: [mailto: ] On Behalf Of avisallen@... Sent: Thursday, 18 June 2009 6:03 AM Subject: [ ] Tasigna Hi, all - Cousin Dona has another question. I notice there seems to be some agreement among Tasigna users that previous Gleevec side effects have lessened. She wonders whether there has been an improved red blood count. Guess she means hemoglobin and hemacrit. She still has no balance from (she thinks) an Aranesp shot. Because her red counts go down so fast, she has had to have a couple more. Blood stays at about 9. Possibility of internal bleeding has been examined. She has had a series of therapy sessions addressing balance, but the consensus seems to be some chemical damage was done to the brain so therapy is useless. Thank you in advance, Avis (Hertz Nurtle) Dona - dx Dec. 2000 Gleevec trial MDACC 4/01 to present (various dosage) Zavie's list #141 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2009 Report Share Posted July 16, 2009 I had that shaking thing with Gleevec! It was very conspicuous in my right hand and foot and it was a bit embarrassing. At first I was afraid I had Parkinson's. Turns out I didn't. The neurologist put me on Neurontin which ended the shakes, but also made me verrry sleepy. Gleevec + Neurontin = Out Cold All the Time. So I thought, I'll just make my peace with the shakes and forgo the Neurontin. The shakes never came back, though. From: bheath@... Date: Wed, 15 Jul 2009 21:39:17 -0400 Subject: [ ] Tasigna Hi All. It's great to see all the discussion on Tasigna. After being on Gleevec for many years - with many side effects - I do think that no matter what we all switch to - we still will have to deal with various side effects. : -( Doesn't seem fair. It is a chemo after all. My biggest concern with the Tasigna now is extreme fatigue - and constant " shakes " . I recall the extreme fatigue when I started on Gleevec and am again experiencing it as I start Tasigna. (After work, I pull my car into the garage and shut the door - and recline my car seat to just nap and get some strength to carry my purse and backpack into the house!) (Is that not pathetic?) I recall doing the SAME thing when I was initially on Gleevec too. The shakiness is something totally foreign to me. My whole body feels " quivery " all over inside and out - and my hands are physically trembling. I did not have this on Gleevec. I've also found that I am having more intense nausea on this new drug. Hopefully this will all abate. It's certainly comforting knowing we all have options for our CML - which is a real blessing. I remember a dear friend who was on the ACOR BMT list - some of you may remember her - Debi Hoegler . . . She was a one of a kind breath of fresh air and unfortunately had her lymphoma return and passed away. Her favorite saying was 'When the train leaves the station - hop onboard and go for the ride' Glad we are all here to share the ride together. Thanks friends! Most sincerely, Barbara Heathcote Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2009 Report Share Posted July 16, 2009 Thanks for sharing that Barbara. I was just complaining because my wbc won't go down and stay down, it's like a yo yo. After reading this, I feel very lucky that I am still able to fight this battle. I will win it too!!! I am so sorry to hear about your friend that lost her life to this stuff. I am also sorry that you are having to work and deal with this too. You are more of a woman than I am honey cause I do good to get up and do housework a little at a time. There is no way I could hold a job right now. So, my hat is off to you!!! BLessings, From: Barbara Heathcote <bheath@...> Subject: [ ] Tasigna Date: Thursday, July 16, 2009, 1:39 AM Hi All. It's great to see all the discussion on Tasigna. After being on Gleevec for many years - with many side effects - I do think that no matter what we all switch to - we still will have to deal with various side effects. : -( Doesn't seem fair. It is a chemo after all. My biggest concern with the Tasigna now is extreme fatigue - and constant " shakes " . I recall the extreme fatigue when I started on Gleevec and am again experiencing it as I start Tasigna. (After work, I pull my car into the garage and shut the door - and recline my car seat to just nap and get some strength to carry my purse and backpack into the house!) (Is that not pathetic?) I recall doing the SAME thing when I was initially on Gleevec too. The shakiness is something totally foreign to me. My whole body feels " quivery " all over inside and out - and my hands are physically trembling. I did not have this on Gleevec. I've also found that I am having more intense nausea on this new drug. Hopefully this will all abate. It's certainly comforting knowing we all have options for our CML - which is a real blessing. I remember a dear friend who was on the ACOR BMT list - some of you may remember her - Debi Hoegler . . . She was a one of a kind breath of fresh air and unfortunately had her lymphoma return and passed away. Her favorite saying was 'When the train leaves the station - hop onboard and go for the ride' Glad we are all here to share the ride together. Thanks friends! Most sincerely, Barbara Heathcote Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2009 Report Share Posted July 16, 2009 Hi Barbara, It is truly amazing how we all fare differently with our drugs. I had never heard of the 'shakes' with Tasigna. With the shakes, have you tried magnesium to see if this may be causing them? We can get quite low levels and this can cause muscle tremors and spasms. It certainly won't hurt you take them - I take 3 in the morning and evening. I hope you feel better soon. Regards, From: [mailto: ] On Behalf Of Barbara Heathcote Sent: Thursday, 16 July 2009 11:39 AM Subject: [ ] Tasigna Hi All. It's great to see all the discussion on Tasigna. After being on Gleevec for many years - with many side effects - I do think that no matter what we all switch to - we still will have to deal with various side effects. : -( Doesn't seem fair. It is a chemo after all. My biggest concern with the Tasigna now is extreme fatigue - and constant " shakes " . I recall the extreme fatigue when I started on Gleevec and am again experiencing it as I start Tasigna. (After work, I pull my car into the garage and shut the door - and recline my car seat to just nap and get some strength to carry my purse and backpack into the house!) (Is that not pathetic?) I recall doing the SAME thing when I was initially on Gleevec too. The shakiness is something totally foreign to me. My whole body feels " quivery " all over inside and out - and my hands are physically trembling. I did not have this on Gleevec. I've also found that I am having more intense nausea on this new drug. Hopefully this will all abate. It's certainly comforting knowing we all have options for our CML - which is a real blessing. I remember a dear friend who was on the ACOR BMT list - some of you may remember her - Debi Hoegler . . . She was a one of a kind breath of fresh air and unfortunately had her lymphoma return and passed away. Her favorite saying was 'When the train leaves the station - hop onboard and go for the ride' Glad we are all here to share the ride together. Thanks friends! Most sincerely, Barbara Heathcote Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 I will be starting on Tasigna two times day on Thursday. Gleevec from March 09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with explosive headache, even worse GI issues and couldn't get out of bed it has taken me a week to recover so I am hoping Tasigna is the one. My doctors nurse didn't give me a lot of info. What can you guys tell me as far as side effect that could happen? Or positive feedback with Tasigna vs Gleevec and Spycel? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Hi Debbie - I had terrible migraines on Glivec, so when I started on Tasigna it was like I was on nothing at all! I still get tired at times (probably cos I try to do too much, or maybe just a CML thing), but Tasi has been a good swap in terms of side effects. The hardest issue is getting the fasting time right - I take it around 6.30 -7am and then breakie 1 hour after and in the evening, fast from 4-4.30pm and take 6-6.30pm and then food 1 hour afterwards. You need to make sure you adhere to the fasting rule as food increases the absorption of Tasigna, which could potentially cause side effects. During the fasting period you can only drink water. Tasigna is known to increase the QT complex in the heart rhythm, therefore you should have an ECG (EKG) prior to taking Tasigna and then a week or so after commencement to ensure you don't have any problems. Regards, Rodorbal Labradors Australia www.rodorbal.com http://au./group/Ozlabradors/ www.labradata.org From: [mailto: ] On Behalf Of Debbie Segars Sent: Tuesday, 4 August 2009 12:16 PM Subject: [ ] Tasigna I will be starting on Tasigna two times day on Thursday. Gleevec from March 09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with explosive headache, even worse GI issues and couldn't get out of bed it has taken me a week to recover so I am hoping Tasigna is the one. My doctors nurse didn't give me a lot of info. What can you guys tell me as far as side effect that could happen? Or positive feedback with Tasigna vs Gleevec and Spycel? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 Debbie. I went through all o that with Gleevec and Sprycel too. Nothing with Tasigna. Good luck and let us know Sharon T _____ From: [mailto: ] On Behalf Of Debbie Segars Sent: Monday, August 03, 2009 7:16 PM Subject: [ ] Tasigna I will be starting on Tasigna two times day on Thursday. Gleevec from March 09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with explosive headache, even worse GI issues and couldn't get out of bed it has taken me a week to recover so I am hoping Tasigna is the one. My doctors nurse didn't give me a lot of info. What can you guys tell me as far as side effect that could happen? Or positive feedback with Tasigna vs Gleevec and Spycel? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 EkG, ECG ( I think they are the same) are a must when you start Tasigna. I had them all the time. Now I have them every three months. Ask the Dr. about them. Sharon T _____ From: [mailto: ] On Behalf Of Debbie Segars Sent: Monday, August 03, 2009 7:40 PM Subject: RE: [ ] Tasigna Okay so fast for two hours take the med and wait another hour then eat. The nurse didn't say anything about an ECG. She did ask me if I had heart problems and I told her no but they run in my family. I am due to start taking it on Thursday. I am working in Boston right now and my Onc is in Georgia (I travel with my job full time) but they didn't schedule me for an ECG.... What is QT Complex? [ [The entire original message is not included] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 I'm a night owl too Sharon, but you have to remember that breaky is the best meal of the day (or should be) and is one reason that contributes to weight gain LOL. I have been an indifferent breakfast eater over the years, but now always eat 2 weetbix and low fat fruit yoghurt and am doing much better weightloss wise. I used to have a diet shake but a lot of these can be hard on the liver, so I only have them occasionally now. Sundays at our household is always brunch with grilled bacon, tomatoes and poached eggs. That's the other issue with Tasigna - it ideally should be taken 12 hours apart, but no less than 8 hours. Regards, From: [mailto: ] On Behalf Of onthewtr@... Sent: Tuesday, 4 August 2009 2:07 PM Subject: Re: [ ] Tasigna Tasagna has been so good to me. I get up abt 7am have coffee or breakfast. I am not a breakfast eater. Take 200mg at abt 10 thirty, then. Eat abt noonish. Then I can do or eat what I want till abt 8 thirty go to bed at 11 thirty I am a night person and read till then take my pill and go 2 sleep. Lots of wtr That works for me. Sharon T Sent via BlackBerry by AT & T [ ] Tasigna I will be starting on Tasigna two times day on Thursday. Gleevec from March 09 to July 09 with major GI issues and extreme fatigue. Sprycel 3 days with explosive headache, even worse GI issues and couldn't get out of bed it has taken me a week to recover so I am hoping Tasigna is the one. My doctors nurse didn't give me a lot of info. What can you guys tell me as far as side effect that could happen? Or positive feedback with Tasigna vs Gleevec and Spycel? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 I have been on Tasigna for two years and I have found that most of my GI issues I had on Gleevec, but like any type of drug or chemotherapy you have to watch a few things. First make sure you follow the directions on not eating two hours before and one hour after. Also try and increase your water intake as Tasigna can cause constipation. You may still notice some fatigue and limited bone pain, but most of your GI issues should disappear. It is also wise to limit your salt intake and watch your blood pressure as sometimes it can cause an increase. Other than that, read your pamphlets Follow the doctors I structions. Have you done your EKG yet? Matt Florida Sent from my iPhone On Aug 3, 2009, at 10:16 PM, Debbie Segars <segersdebbie@...> wrote: > I will be starting on Tasigna two times day on Thursday. Gleevec > from March 09 to July 09 with major GI issues and extreme fatigue. > Sprycel 3 days with explosive headache, even worse GI issues and > couldn't get out of bed it has taken me a week to recover so I am > hoping Tasigna is the one. My doctors nurse didn't give me a lot of > info. What can you guys tell me as far as side effect that could > happen? Or positive feedback with Tasigna vs Gleevec and Spycel? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2009 Report Share Posted August 4, 2009 It is QT Prolongation. Matt Florida Sent from my iPhone On Aug 3, 2009, at 10:40 PM, Debbie Segars <segersdebbie@...> wrote: > Okay so fast for two hours take the med and wait another hour then > eat. The nurse didn't say anything about an ECG. She did ask me if I > had heart problems and I told her no but they run in my family. I am > due to start taking it on Thursday. I am working in Boston right > now and my Onc is in Georgia (I travel with my job full time) but > they didn't schedule me for an ECG.... What is QT Complex? > > [ > > [The entire original message is not included] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Wise moves on your part! From: segersdebbie@... Date: Tue, 4 Aug 2009 14:21:20 -0400 Subject: [ ] Tasigna Just to give you all an update I contacted an oncologist here in Boston that is suppose to be very good. His name is Dr . He was previously at Beth Israel i New York. He has agrred to fit me in on Monday at 3:00 for a new patient appointment. It really frightens me that my oncologist in GA was going to star me on this drug without benefit of an EKG and had not planned to see me again until November. So time for a change. I will not start my new med until after I see the new doctor. Thanks everyone.. I will keep you all up to date. _________________________________________________________________ Express your personality in color! Preview and select themes for Hotmail®. http://www.windowslive-hotmail.com/LearnMore/personalize.aspx?ocid=PID23391::T:W\ LMTAGL:ON:WL:en-US:WM_HYGN_express:082009 Quote Link to comment Share on other sites More sharing options...
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