Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 While this is accurate, the medical community largely feels its more important to reach those milestones in due time with quality of life held in high regard as opposed to reaching those milestones faster but with double the dose of imatinib possibly causing much worse side effects....I suppose my question would be who really benefits from the 800mg of gleevec (when 400 would do the trick tested via serum testing) - the patient or the pharm? -shalyn [ ] Gleevec Basel, June 13, 2008 - New data from a large, international clinical trial find that patients with newly diagnosed chronic myeloid leukemia who received GlivecR (imatinib)[*] at 800 mg/day as their initial treatment achieved clinical milestones significantly faster than those receiving the standard 400 mg/day dose. http://www.novartis.com/newsroom/media-releases/en/2008/1227552.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi Shalyn - here here! I totally agree! However, I have only ever just tolerated 400mg Glivec and recently got results of serum testing as I have been on 200mg due to severe headaches/migraines. My serum level after taking 200mg for 3 weeks was 480ng which is well below the optimal 1000ng. My specialist - Tim said that I may be OK as they can't tell what is going on at cellular level and may be OK for me, but obviously is not a recognized therapeutic level and run the risk of resistance and development of mutations. In OZ, most haem/t will push for newly dx pts to go on 600-800mg. I reckon it would have killed me being on these dosages. On 200mg I do very well, no fatigue and rarely get a headache and live a normal life. There is no way I will increase my Glivec dosage unless there is no other option - fortunately for me I will be able to go on Tasigna. I have responded fabulously well to Glivec and have reached MMR within 10 months of commencing Glivec, but has been a very rocky road for me and I am exceedingly fortunate I have a good employer who values my work and has worked around my frequent sick days. I can see why the push to get to MMR and PCRU quickly - Tim who is THE leading CML specialist in Australia said the reason is that ideally the quicker the response the better as he would like all his CML pts to be PCRU by 2 years. If you don't reach MMR by 12 months, then have 12 months to try harder to reach PCRU by 2 years. If you get to 2 years and still no MMR let alone PCRU then you are in trouble. I know we have lots of " war horses " on this list who are still aiming to get there, but it is thanks to them that all the research data is there to say this is how we can best manage your disease. It is the Skips, the Lotties, the Bobbies and Zavies etc who have trail blazed for us and I am ever so grateful because of their trials and tribulations that I can write this after being dx nearly a year ago and have reached MMR - to know that this is what we strive for and our specialists to give us the best chances to be here in 10, 15, 20 years WITH QUALITY OF LIFE! One of the reasons my haem't despite his misgivings re Tasigna (not enough long term data as opposed to Glivec) is that my QOL is important and I can't have a QOL on anything more than 200mg Glivec! Regards, Down Under _____ From: [mailto: ] On Behalf Of Shalyn Linklater Sent: Sunday, 29 June 2008 5:05 PM Subject: RE: [ ] Gleevec While this is accurate, the medical community largely feels its more important to reach those milestones in due time with quality of life held in high regard as opposed to reaching those milestones faster but with double the dose of imatinib possibly causing much worse side effects....I suppose my question would be who really benefits from the 800mg of gleevec (when 400 would do the trick tested via serum testing) - the patient or the pharm? -shalyn [ ] Gleevec Basel, June 13, 2008 - New data from a large, international clinical trial find that patients with newly diagnosed chronic myeloid leukemia who received GlivecR (imatinib)[*] at 800 mg/day as their initial treatment achieved clinical milestones significantly faster than those receiving the standard 400 mg/day dose. http://www.novartis <http://www.novartis.com/newsroom/media-releases/en/2008/1227552.shtml> ..com/newsroom/media-releases/en/2008/1227552.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2008 Report Share Posted June 29, 2008 Hi , I had my serum level tested a year ago as I wasn't getting to MMR and my Dr from Paris is more agressive than my local oncologist. She told me 1000ng is optimal, down the 500ng is ok. It came back at 600ng, there was some talk of increasing the gleevec to 600mg but I was against and stayed at 400mg. A year later I am PCRU. I think what matters is your regular PCR tests, if they are good everything's fine, if not then you are not taking enough gleevec. Just my take on this. Marcos. On Sun, Jun 29, 2008 at 4:34 AM, Malseed <rodorbal@...> wrote: > Hi Shalyn - here here! I totally agree! However, I have only ever just > tolerated 400mg Glivec and recently got results of serum testing as I have > been on 200mg due to severe headaches/migraines. My serum level after taking > 200mg for 3 weeks was 480ng which is well below the optimal 1000ng. My > specialist - Tim said that I may be OK as they can't tell what is > going on at cellular level and may be OK for me, but obviously is not a > recognized therapeutic level and run the risk of resistance and development > of mutations. > > In OZ, most haem/t will push for newly dx pts to go on 600-800mg. I reckon > it would have killed me being on these dosages. On 200mg I do very well, no > fatigue and rarely get a headache and live a normal life. > > There is no way I will increase my Glivec dosage unless there is no other > option - fortunately for me I will be able to go on Tasigna. I have > responded fabulously well to Glivec and have reached MMR within 10 months of > commencing Glivec, but has been a very rocky road for me and I am > exceedingly fortunate I have a good employer who values my work and has > worked around my frequent sick days. > > I can see why the push to get to MMR and PCRU quickly - Tim who is > THE leading CML specialist in Australia said the reason is that ideally the > quicker the response the better as he would like all his CML pts to be PCRU > by 2 years. If you don't reach MMR by 12 months, then have 12 months to try > harder to reach PCRU by 2 years. If you get to 2 years and still no MMR let > alone PCRU then you are in trouble. I know we have lots of " war horses " on > this list who are still aiming to get there, but it is thanks to them that > all the research data is there to say this is how we can best manage your > disease. It is the Skips, the Lotties, the Bobbies and Zavies etc who have > trail blazed for us and I am ever so grateful because of their trials and > tribulations that I can write this after being dx nearly a year ago and have > reached MMR - to know that this is what we strive for and our specialists to > give us the best chances to be here in 10, 15, 20 years WITH QUALITY OF > LIFE! > > One of the reasons my haem't despite his misgivings re Tasigna (not enough > long term data as opposed to Glivec) is that my QOL is important and I can't > have a QOL on anything more than 200mg Glivec! > > Regards, > > Down Under > > _____ > > From: [mailto: ] On Behalf Of Shalyn > Linklater > Sent: Sunday, 29 June 2008 5:05 PM > > Subject: RE: [ ] Gleevec > > While this is accurate, the medical community largely feels its more > important to reach those milestones in due time with quality of life held in > high regard as opposed to reaching those milestones faster but with double > the dose of imatinib possibly causing much worse side effects....I suppose > my question would be who really benefits from the 800mg of gleevec (when 400 > would do the trick tested via serum testing) - the patient or the pharm? > > -shalyn > > [ ] Gleevec > > Basel, June 13, 2008 - New data from a large, international clinical trial > find that patients with newly diagnosed chronic myeloid leukemia who > received GlivecR (imatinib)[*] at 800 mg/day as their initial treatment > achieved clinical milestones significantly faster than those receiving the > standard 400 mg/day dose. > http://www.novartis > <http://www.novartis.com/newsroom/media-releases/en/2008/1227552.shtml> > .com/newsroom/media-releases/en/2008/1227552.shtml > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 Pam, Regarding Gleevec, just take it a day at a time and try not to have any preconceived notions about how you will feel or respond--let it be your own unique experience. You will know soon enough. Best wishes for a soft landing, Vicki > > > > I need some input regarding Gleevec. Just dx with CML 2 weeks ago. > > Waiting for Gleeved to arrive via mail order pharm. Just don't know > > what to expect. Realizing that everyone is different it's scary > enough > > just knowing you have CML. I would like to hear positive and > negative > > effects of taking this drug. > > Pam > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 Pam, Just wanted to wish you well on the Gleevec. It's a miraculous drug. Everyone's body reacts differenty, but don't let side effects scare you. You will learn how to pace yourself and soon your life will get back to relative normality. Hang in there. The beginning days are tough as you deal with the news and all. Take care, genie dx, 2/2000 on Gleevec 800 mg daily > > > > > > I need some input regarding Gleevec. Just dx with CML 2 weeks > ago. > > > Waiting for Gleeved to arrive via mail order pharm. Just don't > know > > > what to expect. Realizing that everyone is different it's scary > > enough > > > just knowing you have CML. I would like to hear positive and > > negative > > > effects of taking this drug. > > > Pam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Pam, my grandmother had to try several different ways to take the Gleevec. She tried different times of the day and finally found her perfect combination of what and how much to eat with it and the time to take it. You will figure it out. [ ] Re: Gleevec Pam, Just wanted to wish you well on the Gleevec. It's a miraculous drug. Everyone's body reacts differenty, but don't let side effects scare you. You will learn how to pace yourself and soon your life will get back to relative normality. Hang in there. The beginning days are tough as you deal with the news and all. Take care, genie dx, 2/2000 on Gleevec 800 mg daily > > > > > > I need some input regarding Gleevec. Just dx with CML 2 weeks > ago. > > > Waiting for Gleeved to arrive via mail order pharm. Just don't > know > > > what to expect. Realizing that everyone is different it's scary > > enough > > > just knowing you have CML. I would like to hear positive and > > negative > > > effects of taking this drug. > > > Pam > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Does anyone know how to get on Novartis' program for people without insurance? I was unexpectedly laid off of my job along with about 40 others at my paper. Thanks much for the guidance. in SF Bay Area _________________________________________________________________ Keep your kids safer online with Windows Live Family Safety. http://www.windowslive.com/family_safety/overview.html?ocid=TXT_TAGLM_WL_family_\ safety_072008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Thank you, Barb! Much appreciated!! From: barbarastanley@... Date: Wed, 23 Jul 2008 13:55:30 +0000 Subject: [ ] Re: Gleevec Here is the link with the answers to your questions. http://www.gistsupport.org/for-new-patients/financial-assistance.php <http://www.gistsupport.org/for-new-patients/financial-assistance.php> It shows the Novartis connection as well as others. Good Luck. The last thing we survivors need is another stress like being laid off. So sorry to hear it. Barb > > > Does anyone know how to get on Novartis' program for people without insurance? I was unexpectedly laid off of my job along with about 40 others at my paper. Thanks much for the guidance. > > in SF Bay Area > > __________________________________________________________ > Keep your kids safer online with Windows Live Family Safety. > http://www.windowslive.com/family_safety/overview.html?ocid=TXT_TAGLM_WL\ _family_safety_072008 > > Quote Link to comment Share on other sites More sharing options...
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