Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 This newsletter was in my mail box today, thought you might be interested in a few tidbits and the good news for Tasigna users, I haven't been able to do much research as my thoughts and time have been taken up trying to be supportive of my brother's family in their time of need. Each day he grows weaker, so we know the end is near, but he still hears us and tries to move his fingers to communicate. Thank you for all your concern and prayers being offered up. _______________________ " New data show that at 24 months, patients in the chronic phase of Philadelphia chromosome positive (Ph+) chronic myeloid leukaemia (CML) who are intolerant or resistant to current first-line therapy (Glivec) experienced a rapid response and significant reduction in leukaemia burden when treated with 400mg Tasigna twice-daily1. " http://www.medicalnewstoday.com/articles/155782.php These results were presented at the 14th Congress of the European Haematology Association (EHA) in Berlin, Germany and substantiate data presented at the American Society of Haematology meeting in San Francisco last year. ------------------------------------------------------------ October 29, 2009 - Leukemia Cell Detection " Superconducting Quantum Interference Device (SQUID) enhanced the ability to rapidly quantify the amount of nanoparticle bound tumor cells in a sample at least 10 fold, and increased sensitivity of minimal residual disease measurements. Results of this proof-of-concept study are published in Cancer Research, a journal of the American Association for Cancer Research. Previous studies have indicated that the magnetic needle can collect approximately 80 percent of leukemia cells in a bone marrow sample in a matter of minutes, according to R. Flynn, Ph.D., president and CEO of Senior Scientific, LLC. " http://www.medicalnewstoday.com/articles/166600.php _____________________________________ Swine flu map http://www.medicalnewstoday.com/articles/147716.php FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2009 Report Share Posted November 4, 2009 Thanks Lottie, My prayers are still with you. On my last visit with my Oncologist, he told me that soon Tasigna would be given to first time CMLers instead of Glevec. He probably knew this information you just sent us. I find it very encouraging! Come March it will be two years since I have started Tasigna and PCRU for 20 months. And the best part!!!-no side effects at all. Except for hair thinning. But that comes and goes and I can live with that. Take care Sharon T _____ From: [mailto: ] On Behalf Of Lottie Duthu Sent: Tuesday, November 03, 2009 10:33 PM CML Subject: [ ] Tasigna This newsletter was in my mail box today, thought you might be interested in a few tidbits and the good news for Tasigna users, I haven't been able to do much research as my thoughts and time have been taken up trying to be supportive of my brother's family in their time of need. Each day he grows weaker, so we know the end is near, but he still hears us and tries to move his fingers to communicate. Thank you for all your concern and prayers being offered up. _______________________ " New data show that at 24 months, patients in the chronic phase of Philadelphia chromosome positive (Ph+) chronic myeloid leukaemia (CML) who are intolerant or resistant to current first-line therapy (Glivec) experienced a rapid response and significant reduction in leukaemia burden when treated with 400mg Tasigna twice-daily1. " http://www.medicaln <http://www.medicalnewstoday.com/articles/155782.php> ewstoday.com/articles/155782.php These results were presented at the 14th Congress of the European Haematology Association (EHA) in Berlin, Germany and substantiate data presented at the American Society of Haematology meeting in San Francisco last year. ---------------------------------------------------------- October 29, 2009 - Leukemia Cell Detection " Superconducting Quantum Interference Device (SQUID) enhanced the ability to rapidly quantify the amount of nanoparticle bound tumor cells in a sample at least 10 fold, and increased sensitivity of minimal residual disease measurements. Results of this proof-of-concept study are published in Cancer Research, a journal of the American Association for Cancer Research. Previous studies have indicated that the magnetic needle can collect approximately 80 percent of leukemia cells in a bone marrow sample in a matter of minutes, according to R. Flynn, Ph.D., president and CEO of Senior Scientific, LLC. " http://www.medicaln <http://www.medicalnewstoday.com/articles/166600.php> ewstoday.com/articles/166600.php _____________________________________ Swine flu map http://www.medicaln <http://www.medicalnewstoday.com/articles/147716.php> ewstoday.com/articles/147716.php FYI, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 Hi , I've been on Tasigna since Aug 08 and it has been so much better than Glivec. Yes there have been deaths, but these relate back to the original trial patients where they were not screened for heart disease and most of these patients also were in blast phase, so their circumstances were a lot different. You would be surprised at how many cardio toxic 'ordinary' drugs there are out there of which QT prolongation can occur, are regularly prescribed and patients not told unless you read the fine print in the patient information sheets. With a relatively 'new' drug such as Tasigna, Novartis are duty bound to disclose this. I must re read the info on Tasigna as I can't recall the intra cranial haemorrhage issue or the febrile neutropenia. Myelosuppression can happen with most of these drugs and a fellow Aussie friend has had a lot of problems with her counts, whereas I haven't. Fatigue can still be a problem - not initially but has become a problem the longer I have been on Tasigna, even though most days I walk for 45 - 60 mins. The main issue for me has been the impact on my gut (I have low grade Chrohns disease) - stomach ulcer and recently I've had some hosp visits to investigate chest pain, but was actually referred pain from my gut. Changing to Tasigna was like lifting the most awful fog from my life and I truly dread ever having to go back to Glivec if I had to. Apart from the fasting issues, it is a great drug and you lose all the Glivec weight gain! 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% 30/03/09 - 0.000% Re: [ ] Tasigna I'm hearing that same thing, that they think it will soon replace Gleevec! You know, I had no idea that they were required to post a warning no matter how few people suffered a given side effect. That makes me feel better. In this brochure, they list intracranial hemorrhage as one of the adverse reactions. That's no joke! And then the febrile neutropenia, leukopenia, pyrexia, pneumonia and then the QT prolongation. Well, it scared me out of my wits. Then here's the other thing. They say, " There have been deaths. " Well, how many out of how many? If it's three out of 10,000, no big deal. But if it's 5 out of 100, that's really something to think about. I have to admit, I've heard from many " satisfied customers, " and I haven't heard of anyone who got into real trouble on Tasigna. I'm especially nervous because for the time being, I am going to the clinic at the county hospital for care. The people there are tops. But the emergency room is dreadful. I took a young friend there one night when she hurt her head -- there were people on gurneys, people in all states of disrepair and there was only one doctor on duty.It seemed like everyone had been waiting for hours. I heard a guy complaining that he and his wife had been waiting since the afternoon and they hadn't even seen a nurse. Ambulances were bringing in people with gunshot wounds and the like. So I figure if something bad happens, I'll have better luck saying my prayers than going to the hospital! Also, what with the cutbacks in California, they cut two of my doctor's clinic fellow positions, so now it's just him and one fellow seeing all these patients. I'm supposed to get an EKG, have my labs drawn, and start taking Tasigna, then see him in seven days -- except that they don't have an opening for three weeks. Maybe once I'm past the initial stage I won't sweat it so much. Thanks for your pep talk, Lottie -- you are always a source of strength and calm. Bless you for it. On Wed, Mar 24, 2010 at 3:45 PM, Lottie Duthu <lotajam@...> wrote: > > > Dear . > What scared you so much? Would you share the contents of that message from > Novartis about Tasigna? It doesn't mean that it will happen, it just means > that it happened to at least one person and I think of all the patients who > are raving about it. > > That reminds me of when I went to get a back procedure while Jimmy was in > the hospital. The last item on the list of possible occurences was " death " . > I was a basket case, staying in the hospital 24/7 for over a week and when I > saw that, I couldn't sign the consesnt form. I walked off. Later after I had > time to re-think it and felt better, I did go back. That doctor was so nice, > when he found out I was having surgery, he came to visit me in the hospital, > still kidding me about my refusal and in not trusting him. > > Think about it for a while and I'm sure you will put your misgivings aside > once you have talked to others. The doctors are telling me that it will soon > replace Gleevec as first line of defense against CML. That's pretty high > praise coming from a pretty broad base of doctors. I hope it all comes " out > in the wash " . > > Hands & hearts, > Lottie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 WOW. Well, that was sure an upper, ! And it sure explains a lot. Thanks so much. On one hand, I'm looking forward to feeling more peppy so I can exercise more. On the other hand, I've been afraid if I exercise too much, I'll tax my heart and keel over! On Sat, Mar 27, 2010 at 10:02 PM, Malseed <rodorbal@...>wrote: > > > Hi , > > I've been on Tasigna since Aug 08 and it has been so much better than > Glivec. Yes there have been deaths, but these relate back to the original > trial patients where they were not screened for heart disease and most of > these patients also were in blast phase, so their circumstances were a lot > different. You would be surprised at how many cardio toxic 'ordinary' drugs > there are out there of which QT prolongation can occur, are regularly > prescribed and patients not told unless you read the fine print in the > patient information sheets. With a relatively 'new' drug such as Tasigna, > Novartis are duty bound to disclose this. > > I must re read the info on Tasigna as I can't recall the intra cranial > haemorrhage issue or the febrile neutropenia. Myelosuppression can happen > with most of these drugs and a fellow Aussie friend has had a lot of > problems with her counts, whereas I haven't. Fatigue can still be a problem > - not initially but has become a problem the longer I have been on Tasigna, > even though most days I walk for 45 - 60 mins. > > The main issue for me has been the impact on my gut (I have low grade > Chrohns disease) - stomach ulcer and recently I've had some hosp visits to > investigate chest pain, but was actually referred pain from my gut. > > Changing to Tasigna was like lifting the most awful fog from my life and I > truly dread ever having to go back to Glivec if I had to. Apart from the > fasting issues, it is a great drug and you lose all the Glivec weight gain! > > 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% > 30/03/09 - 0.000% > > > Re: [ ] Tasigna > > I'm hearing that same thing, that they think it will soon replace Gleevec! > > You know, I had no idea that they were required to post a warning no matter > how few people suffered a given side effect. That makes me feel better. > > In this brochure, they list intracranial hemorrhage as one of the adverse > reactions. That's no joke! And then the febrile neutropenia, leukopenia, > pyrexia, pneumonia and then the QT prolongation. Well, it scared me out of > my wits. > > Then here's the other thing. They say, " There have been deaths. " Well, how > many out of how many? If it's three out of 10,000, no big deal. But if it's > 5 out of 100, that's really something to think about. > > I have to admit, I've heard from many " satisfied customers, " and I haven't > heard of anyone who got into real trouble on Tasigna. > > I'm especially nervous because for the time being, I am going to the clinic > at the county hospital for care. The people there are tops. But the > emergency room is dreadful. I took a young friend there one night when she > hurt her head -- there were people on gurneys, people in all states of > disrepair and there was only one doctor on duty.It seemed like everyone had > been waiting for hours. I heard a guy complaining that he and his wife had > been waiting since the afternoon and they hadn't even seen a nurse. > Ambulances were bringing in people with gunshot wounds and the like. So I > figure if something bad happens, I'll have better luck saying my prayers > than going to the hospital! > > Also, what with the cutbacks in California, they cut two of my doctor's > clinic fellow positions, so now it's just him and one fellow seeing all > these patients. I'm supposed to get an EKG, have my labs drawn, and start > taking Tasigna, then see him in seven days -- except that they don't have > an > opening for three weeks. > > Maybe once I'm past the initial stage I won't sweat it so much. > > Thanks for your pep talk, Lottie -- you are always a source of strength and > calm. Bless you for it. > > > > On Wed, Mar 24, 2010 at 3:45 PM, Lottie Duthu <lotajam@...<lotajam%40comcast.net>> > wrote: > > > > > > > Dear . > > What scared you so much? Would you share the contents of that message > from > > Novartis about Tasigna? It doesn't mean that it will happen, it just > means > > that it happened to at least one person and I think of all the patients > who > > are raving about it. > > > > That reminds me of when I went to get a back procedure while Jimmy was in > > the hospital. The last item on the list of possible occurences was > " death " . > > I was a basket case, staying in the hospital 24/7 for over a week and > when > I > > saw that, I couldn't sign the consesnt form. I walked off. Later after I > had > > time to re-think it and felt better, I did go back. That doctor was so > nice, > > when he found out I was having surgery, he came to visit me in the > hospital, > > still kidding me about my refusal and in not trusting him. > > > > Think about it for a while and I'm sure you will put your misgivings > aside > > once you have talked to others. The doctors are telling me that it will > soon > > replace Gleevec as first line of defense against CML. That's pretty high > > praise coming from a pretty broad base of doctors. I hope it all comes > " out > > in the wash " . > > > > Hands & hearts, > > Lottie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 Hi - I used to feel that way at the start and especially exercising straight after taking Tasi, but has all been good and I don't even think about it now. PS when I was having the chest pains, I had all the tests under the sun - heaps of ECGs, cardiac enzymes, stress ECG on a treadmill and came through with a clean bill of heart health! Regards, Â Â Â Re: [ ] Tasigna > > I'm hearing that same thing, that they think it will soon replace Gleevec! > > You know, I had no idea that they were required to post a warning no matter > how few people suffered a given side effect. That makes me feel better. > > In this brochure, they list intracranial hemorrhage as one of the adverse > reactions. That's no joke! And then the febrile neutropenia, leukopenia, > pyrexia, pneumonia and then the QT prolongation. Well, it scared me out of > my wits. > > Then here's the other thing. They say, " There have been deaths. " Well, how > many out of how many? If it's three out of 10,000, no big deal. But if it's > 5 out of 100, that's really something to think about. > > I have to admit, I've heard from many " satisfied customers, " and I haven't > heard of anyone who got into real trouble on Tasigna. > > I'm especially nervous because for the time being, I am going to the clinic > at the county hospital for care. The people there are tops. But the > emergency room is dreadful. I took a young friend there one night when she > hurt her head -- there were people on gurneys, people in all states of > disrepair and there was only one doctor on duty.It seemed like everyone had > been waiting for hours. I heard a guy complaining that he and his wife had > been waiting since the afternoon and they hadn't even seen a nurse. > Ambulances were bringing in people with gunshot wounds and the like. So I > figure if something bad happens, I'll have better luck saying my prayers > than going to the hospital! > > Also, what with the cutbacks in California, they cut two of my doctor's > clinic fellow positions, so now it's just him and one fellow seeing all > these patients. I'm supposed to get an EKG, have my labs drawn, and start > taking Tasigna, then see him in seven days -- except that they don't have > an > opening for three weeks. > > Maybe once I'm past the initial stage I won't sweat it so much. > > Thanks for your pep talk, Lottie -- you are always a source of strength and > calm. Bless you for it. > > > > On Wed, Mar 24, 2010 at 3:45 PM, Lottie Duthu <lotajam@...<lotajam%40comcast.net>> > wrote: > > > > > > > Dear . > > What scared you so much? Would you share the contents of that message > from > > Novartis about Tasigna? It doesn't mean that it will happen, it just > means > > that it happened to at least one person and I think of all the patients > who > > are raving about it. > > > > That reminds me of when I went to get a back procedure while Jimmy was in > > the hospital. The last item on the list of possible occurences was > " death " . > > I was a basket case, staying in the hospital 24/7 for over a week and > when > I > > saw that, I couldn't sign the consesnt form. I walked off. Later after I > had > > time to re-think it and felt better, I did go back. That doctor was so > nice, > > when he found out I was having surgery, he came to visit me in the > hospital, > > still kidding me about my refusal and in not trusting him. > > > > Think about it for a while and I'm sure you will put your misgivings > aside > > once you have talked to others. The doctors are telling me that it will > soon > > replace Gleevec as first line of defense against CML. That's pretty high > > praise coming from a pretty broad base of doctors. I hope it all comes > " out > > in the wash " . > > > > Hands & hearts, > > Lottie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2010 Report Share Posted March 28, 2010 Bless you and thank you! On Sat, Mar 27, 2010 at 10:25 PM, Malseed <rodorbal@...>wrote: > > > Hi - I used to feel that way at the start and especially exercising > straight after taking Tasi, but has all been good and I don't even think > about it now. PS when I was having the chest pains, I had all the tests > under the sun - heaps of ECGs, cardiac enzymes, stress ECG on a treadmill > and came through with a clean bill of heart health! > > Regards, > > > > > > > Re: [ ] Tasigna > > > > I'm hearing that same thing, that they think it will soon replace > Gleevec! > > > > You know, I had no idea that they were required to post a warning no > matter > > how few people suffered a given side effect. That makes me feel better. > > > > In this brochure, they list intracranial hemorrhage as one of the adverse > > reactions. That's no joke! And then the febrile neutropenia, leukopenia, > > pyrexia, pneumonia and then the QT prolongation. Well, it scared me out > of > > my wits. > > > > Then here's the other thing. They say, " There have been deaths. " Well, > how > > many out of how many? If it's three out of 10,000, no big deal. But if > it's > > 5 out of 100, that's really something to think about. > > > > I have to admit, I've heard from many " satisfied customers, " and I > haven't > > heard of anyone who got into real trouble on Tasigna. > > > > I'm especially nervous because for the time being, I am going to the > clinic > > at the county hospital for care. The people there are tops. But the > > emergency room is dreadful. I took a young friend there one night when > she > > hurt her head -- there were people on gurneys, people in all states of > > disrepair and there was only one doctor on duty.It seemed like everyone > had > > been waiting for hours. I heard a guy complaining that he and his wife > had > > been waiting since the afternoon and they hadn't even seen a nurse. > > Ambulances were bringing in people with gunshot wounds and the like. So I > > figure if something bad happens, I'll have better luck saying my prayers > > than going to the hospital! > > > > Also, what with the cutbacks in California, they cut two of my doctor's > > clinic fellow positions, so now it's just him and one fellow seeing all > > these patients. I'm supposed to get an EKG, have my labs drawn, and start > > taking Tasigna, then see him in seven days -- except that they don't have > > an > > opening for three weeks. > > > > Maybe once I'm past the initial stage I won't sweat it so much. > > > > Thanks for your pep talk, Lottie -- you are always a source of strength > and > > calm. Bless you for it. > > > > > > > > On Wed, Mar 24, 2010 at 3:45 PM, Lottie Duthu > <lotajam@... <lotajam%40comcast.net><lotajam%40comcast.net>> > > > wrote: > > > > > > > > > > > Dear . > > > What scared you so much? Would you share the contents of that message > > from > > > Novartis about Tasigna? It doesn't mean that it will happen, it just > > means > > > that it happened to at least one person and I think of all the patients > > who > > > are raving about it. > > > > > > That reminds me of when I went to get a back procedure while Jimmy was > in > > > the hospital. The last item on the list of possible occurences was > > " death " . > > > I was a basket case, staying in the hospital 24/7 for over a week and > > when > > I > > > saw that, I couldn't sign the consesnt form. I walked off. Later after > I > > had > > > time to re-think it and felt better, I did go back. That doctor was so > > nice, > > > when he found out I was having surgery, he came to visit me in the > > hospital, > > > still kidding me about my refusal and in not trusting him. > > > > > > Think about it for a while and I'm sure you will put your misgivings > > aside > > > once you have talked to others. The doctors are telling me that it will > > soon > > > replace Gleevec as first line of defense against CML. That's pretty > high > > > praise coming from a pretty broad base of doctors. I hope it all comes > > " out > > > in the wash " . > > > > > > Hands & hearts, > > > Lottie > > > > > > Quote Link to comment Share on other sites More sharing options...
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