Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Dear Ursula, After take Gleevic on and off for 3 years and then took it with Prednisone to offset the side effectsn I still showed 20 out of 25 cancer cells in my blood. I was taken off that treatment plan and was put on the BMS trial and within a few months there were signs of reduced cancer cells and in 8 months I was in total PCRU. With Dasatinib, the only side effect I have is a few red spots on the top of my head, otherwise I feel fine as I feel like I am reborn. Dasatinib may be your magic pill. Love, light and powerful healing, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi Ursula, Soounds like everything is working out for you. Congratulations on getting into the trial. I hope you continue to feel better and see good results from the trial. Take care, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 My prayer with you. Good Luck in the trial. T dxd 1/03 CCR 7/03 PCRU pending -------------- Original message -------------- From: " Ula " <cosmicgoddess1@...> Hello all, I had not posted for some time but am surely reading most of the posts! I wanted to give you all some updates about my wellbeing and some news. Having been diagnosed with CML on 1 March 2005 and taken Hydrea for 28 days, thereafter I was prescriped Gleevec 400 which brought my bloodcount and my health almost back to normal for a while. When I say for a while I mean I had ended up in Hospital due to high Fever because my white blood cells took a tumble. I was advised from my Doctor to stop taking Gleevec alltogether for 2 weeks and when I start again to take one 400 mg every second day. My Liver were showing signs of poisening, my headaches gotten out of control and in the end I took Gleevec only ever 3th day. My Bloodtests did not show any improvement in regards to my Liver Enzymes, my headache was persistant and my Onc asked me if I wanted to take part in a trial for the BMS-354825. Of course my Liver had to recover first and I was taken off Gleevec all together. I'm off Gleevec since January 8th. I'm not taking any other medication, stopped my HRT as well to give the liver a Break and time to recover. I was made aware that if my liver would not get back to normal I would not get into the trial. Today I went again to the MacCallum Cancer Centre in Melbourne, met my new Doctor Seymour and was accepted for the trial since my latest Blood test showed further improvement of the liver. I had another Blood test and a chest xray done today, and will be having my 3th BMB since dxd, this coming thursday. If nothing unforseen comes inbetween I will be starting with the trial on the 28th this month. I have been informed about the possible side effects and also about other possibilites if I cannot take the drug. As for me I will and do not consider a BMT, there are other ways, always other medications. After all I do consider myself lucky to live today and not some 20 or 30 years ago. Well, that's all for this time, I keep on reading your posts, even though I do not understand all the medical jargon I wish you all well! Ursula Melbourne, Australia CML dxd 1 March 2005 off Gleevec since 8 January 2006 BMS-354825 Trial pending Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi everyone I live in the UK and have never posted on this site although I enjoy reading all the posts from across the world. I was prompted to post today after I saw Ursula's note. I was diagnosed on the same day......March 1st 2005 - a date I will never forget. I was on glivec a week later ( 400 mgs.), I was only 72% ph+ve and reached CCR 9 weeks later. I had a multitude of the usual side effects but was eventually taken off the glivec at the end of October. The final straw was pins and needles all over my body and a funny skin sensation. I was off glivec for 10 weeks, wow did I feel so much better! I started again early January and the tingling and funny skin problems came back immediately, albeit not so bad as before. I saw a neurologist last week and am waiting for a MRI. Depending on what the scan shows then I may be able to take a mild dosage of an epilepsy drug to control the side effects. My haematologist is also finding out if I can get on the AMN or BMS trial. I have the usual nausea, diahorrea, feeling yuck and cold intolerance as well. I was 'amused' to find someone else on the other side of the world diagnosed on the same day as me. Hi Ursula, good luck luck with the BMS. [ ] Clinical Trial of BMS-354825 Hello all, I had not posted for some time but am surely reading most of the posts! I wanted to give you all some updates about my wellbeing and some news. Having been diagnosed with CML on 1 March 2005 and taken Hydrea for 28 days, thereafter I was prescriped Gleevec 400 which brought my bloodcount and my health almost back to normal for a while. When I say for a while I mean I had ended up in Hospital due to high Fever because my white blood cells took a tumble. I was advised from my Doctor to stop taking Gleevec alltogether for 2 weeks and when I start again to take one 400 mg every second day. My Liver were showing signs of poisening, my headaches gotten out of control and in the end I took Gleevec only ever 3th day. My Bloodtests did not show any improvement in regards to my Liver Enzymes, my headache was persistant and my Onc asked me if I wanted to take part in a trial for the BMS-354825. Of course my Liver had to recover first and I was taken off Gleevec all together. I'm off Gleevec since January 8th. I'm not taking any other medication, stopped my HRT as well to give the liver a Break and time to recover. I was made aware that if my liver would not get back to normal I would not get into the trial. Today I went again to the MacCallum Cancer Centre in Melbourne, met my new Doctor Seymour and was accepted for the trial since my latest Blood test showed further improvement of the liver. I had another Blood test and a chest xray done today, and will be having my 3th BMB since dxd, this coming thursday. If nothing unforseen comes inbetween I will be starting with the trial on the 28th this month. I have been informed about the possible side effects and also about other possibilites if I cannot take the drug. As for me I will and do not consider a BMT, there are other ways, always other medications. After all I do consider myself lucky to live today and not some 20 or 30 years ago. Well, that's all for this time, I keep on reading your posts, even though I do not understand all the medical jargon I wish you all well! Ursula Melbourne, Australia CML dxd 1 March 2005 off Gleevec since 8 January 2006 BMS-354825 Trial pending Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2006 Report Share Posted February 21, 2006 Hi , It's nice to see you posting on this list. Sorry to hear about your problems and hope that maybe one of the new drugs will solve them. is # 858 in the Zero Club. She received her Y A H O O O !!! Y I P P E E E !!! In June on the European list. Zavie [ ] Clinical Trial of BMS-354825 Hello all, I had not posted for some time but am surely reading most of the posts! I wanted to give you all some updates about my wellbeing and some news. Having been diagnosed with CML on 1 March 2005 and taken Hydrea for 28 days, thereafter I was prescriped Gleevec 400 which brought my bloodcount and my health almost back to normal for a while. When I say for a while I mean I had ended up in Hospital due to high Fever because my white blood cells took a tumble. I was advised from my Doctor to stop taking Gleevec alltogether for 2 weeks and when I start again to take one 400 mg every second day. My Liver were showing signs of poisening, my headaches gotten out of control and in the end I took Gleevec only ever 3th day. My Bloodtests did not show any improvement in regards to my Liver Enzymes, my headache was persistant and my Onc asked me if I wanted to take part in a trial for the BMS-354825. Of course my Liver had to recover first and I was taken off Gleevec all together. I'm off Gleevec since January 8th. I'm not taking any other medication, stopped my HRT as well to give the liver a Break and time to recover. I was made aware that if my liver would not get back to normal I would not get into the trial. Today I went again to the MacCallum Cancer Centre in Melbourne, met my new Doctor Seymour and was accepted for the trial since my latest Blood test showed further improvement of the liver. I had another Blood test and a chest xray done today, and will be having my 3th BMB since dxd, this coming thursday. If nothing unforseen comes inbetween I will be starting with the trial on the 28th this month. I have been informed about the possible side effects and also about other possibilites if I cannot take the drug. As for me I will and do not consider a BMT, there are other ways, always other medications. After all I do consider myself lucky to live today and not some 20 or 30 years ago. Well, that's all for this time, I keep on reading your posts, even though I do not understand all the medical jargon I wish you all well! Ursula Melbourne, Australia CML dxd 1 March 2005 off Gleevec since 8 January 2006 BMS-354825 Trial pending Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Hi Zavie Thanks for your email, it was nice to hear from you. I have heard today that I have an appointment to be considered for the BMS trial as I am deemed to be intolerant to the glivec. I am going along for assessment in 2 weeks time. Can anyone give me any insights into side effects etc. Thanks [ ] Clinical Trial of BMS-354825 Hello all, I had not posted for some time but am surely reading most of the posts! I wanted to give you all some updates about my wellbeing and some news. Having been diagnosed with CML on 1 March 2005 and taken Hydrea for 28 days, thereafter I was prescriped Gleevec 400 which brought my bloodcount and my health almost back to normal for a while. When I say for a while I mean I had ended up in Hospital due to high Fever because my white blood cells took a tumble. I was advised from my Doctor to stop taking Gleevec alltogether for 2 weeks and when I start again to take one 400 mg every second day. My Liver were showing signs of poisening, my headaches gotten out of control and in the end I took Gleevec only ever 3th day. My Bloodtests did not show any improvement in regards to my Liver Enzymes, my headache was persistant and my Onc asked me if I wanted to take part in a trial for the BMS-354825. Of course my Liver had to recover first and I was taken off Gleevec all together. I'm off Gleevec since January 8th. I'm not taking any other medication, stopped my HRT as well to give the liver a Break and time to recover. I was made aware that if my liver would not get back to normal I would not get into the trial. Today I went again to the MacCallum Cancer Centre in Melbourne, met my new Doctor Seymour and was accepted for the trial since my latest Blood test showed further improvement of the liver. I had another Blood test and a chest xray done today, and will be having my 3th BMB since dxd, this coming thursday. If nothing unforseen comes inbetween I will be starting with the trial on the 28th this month. I have been informed about the possible side effects and also about other possibilites if I cannot take the drug. As for me I will and do not consider a BMT, there are other ways, always other medications. After all I do consider myself lucky to live today and not some 20 or 30 years ago. Well, that's all for this time, I keep on reading your posts, even though I do not understand all the medical jargon I wish you all well! Ursula Melbourne, Australia CML dxd 1 March 2005 off Gleevec since 8 January 2006 BMS-354825 Trial pending Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 _____ From: Leigh personal account [mailto:susanleigh@...] Sent: Wednesday, February 22, 2006 4:30 PM Subject: RE: [ ] Clinical Trial of BMS-354825 Hi Zavie Thanks for your email, it was nice to hear from you. I have heard today that I have an appointment to be considered for the BMS trial as I am deemed to be intolerant to the glivec. I am going along for assessment in 2 weeks time. Can anyone give me any insights into side effects etc. Thanks [ ] Clinical Trial of BMS-354825 Hello all, I had not posted for some time but am surely reading most of the posts! I wanted to give you all some updates about my wellbeing and some news. Having been diagnosed with CML on 1 March 2005 and taken Hydrea for 28 days, thereafter I was prescriped Gleevec 400 which brought my bloodcount and my health almost back to normal for a while. When I say for a while I mean I had ended up in Hospital due to high Fever because my white blood cells took a tumble. I was advised from my Doctor to stop taking Gleevec alltogether for 2 weeks and when I start again to take one 400 mg every second day. My Liver were showing signs of poisening, my headaches gotten out of control and in the end I took Gleevec only ever 3th day. My Bloodtests did not show any improvement in regards to my Liver Enzymes, my headache was persistant and my Onc asked me if I wanted to take part in a trial for the BMS-354825. Of course my Liver had to recover first and I was taken off Gleevec all together. I'm off Gleevec since January 8th. I'm not taking any other medication, stopped my HRT as well to give the liver a Break and time to recover. I was made aware that if my liver would not get back to normal I would not get into the trial. Today I went again to the MacCallum Cancer Centre in Melbourne, met my new Doctor Seymour and was accepted for the trial since my latest Blood test showed further improvement of the liver. I had another Blood test and a chest xray done today, and will be having my 3th BMB since dxd, this coming thursday. If nothing unforseen comes inbetween I will be starting with the trial on the 28th this month. I have been informed about the possible side effects and also about other possibilites if I cannot take the drug. As for me I will and do not consider a BMT, there are other ways, always other medications. After all I do consider myself lucky to live today and not some 20 or 30 years ago. Well, that's all for this time, I keep on reading your posts, even though I do not understand all the medical jargon I wish you all well! Ursula Melbourne, Australia CML dxd 1 March 2005 off Gleevec since 8 January 2006 BMS-354825 Trial pending Quote Link to comment Share on other sites More sharing options...
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