Re: [CMLHope] Re: update on how many years we have been fighting CML
The bottom line is what works for some folks does not mean it's going to work for others. I'm only glad that all of you that stopped the meds. things are working out for you. I stopped Gleevec for 26 days back in 2010 and my blood work showed that the cells were popping up again. Guess I'll be on it until I take my ride in my Corvette up into the sky to Corvette heaven. A few weeks ago I was sitting at a stop light with a truck in front of me with a BIG TRAILER HITCH BALL ON THE BACK. He takes of then stops dead, of course I didn't. $6330.00 damage to the front in. Then he takes off. I don't think he was from this Country that's why he left. I just picked up it up a few hours ago. Looks o.k. the paint matches. Silver is a hard color to match, I used to paint Corvettes, I think that's where I got my CML from painting cars.. You all take care, greenie In a message dated 11/9/2012 10:03:52 A.M. Eastern Standard Time, rszim0...@aol.com writes: Along with Richard, I had problems with gleevec. I was diagnosed on February 14, 2005. Went on gleevec after two weeks of hydroxyrea. Was on gleevec for 2 1/2 years before having a brain bleed, so on my own decided to refuse all medication. I had been in complete remission for 2 years at that time. Never missed a dose of gleevec, took it religiously in spite of all side affects. My docs did not agree with me going off this, but went along. I get checked every 3 months for my counts, still in cellular remission. I had a few bcr/abl tests since coming off the medicine. They showed slowly coming out of remission. I've had two more brain bleeds since then, and a final full-blown stroke in March of 2009. Thank goodness I have recovered from the stroke with minimal damage to my left side. Still weak but moveable. I will go back on medication if I come out of cellular remission, but am enjoying every day without it. That is 5 1/2 years without gleevec and counting. Thank you, God! 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Richard H richard1huff...@comcast.net To: cmlhope cmlhope@googlegroups.com Sent: Thu, Nov 8, 2012 11:17 pm Subject: [CMLHope] Re: update on how many years we have been fighting CML The reason my ONC agreed to let me go without a CML medication is because I was having problems with Gleevec. When we discussed our options in 2008. He and I agreed to see how long it would be before my PCR indicated that I should be on medication. That was 4 years ago and my counts remain at a low level. I have included my history. Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .7 1/08 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Pressent QT-PCR .3 4/09 QT-PCR .15 6/09 QT-PCR .21 9/09 QT-PCR .28 1/10 QT-PCR .1+ 4/10 QT-PCR .468 10/10 QT-PCR .468 2/11 QT-PCR .323 8/011 QT-PCR .261 2//2012 QT-PCR .241 8/12 Next QT-PCR 4/2013 On Thursday, November 8, 2012 5:08:28 AM UTC-6, Draz wrote: Congrats on the 9th year I myself only got diagnosed last year July so 1.5 years almost. I have been using Glivec for 4 days and then got switched to Tasigna, normal levels of white cells within 2 weeks (309 starting value), spleen back to normal in 3 months and complete molecular response was reached last february. I have no idea how long I'll have to take the medication but I'm not experiencing any side effects at all (at start some itchiness but a good scrub and skinpeeling session with doctor fish cleared that up for good) so I have no problem taking them. At the moment I'm enrolled at several extra research options in the hospital and countrywide, which basically means for the next 2 years I'll be doing bonemarrow sampling every third month and bloodwork once per month. My body can handle the damage and if it helps someone else go for it. I have accepted the fact it might be for life (testing/medication/all that jazz) and accepted the fact getting kids will be difficult but I heard that after a period people stop with the medication and try without... is this even advised? - Draz On Thursday, November 1, 2012 2:40:42 PM UTC+1, Jeanie wrote: Yahooo Jan will be my 9th year of my fight against CML. 5 Years on Gleevec Few Months On Tasigna Almost 4 Years On Sprycel Miracles do happen. Jeanie3 Would like to hear from everyone on their years on certain CML Drugs? In a message dated 10/27/2012 5:46:44 P.M. Eastern Daylight Time, rszi...@aol.com writes: 5 1/2 years free of gleevec and still in cellular remission, I AM A MIRACLE. To God be the glory. Susan F. Zimmerman Look among
Re: [CMLHope] Re: update on how many years we have been fighting CML
Greenie: Glad that only the car got hurt! Our 25 year old daughter just moved back in because she has two broken ankles from SKYDIVING. I think there is something wrong with the picture - mom with CML and dad with heart problems, both working full time, taking care of the non weight bearing adventurer! She's a solo diver and in the next year a group is diving for dollars for LLS. Stay well and careful driving. MARCIE Sent from my iPad On Nov 9, 2012, at 4:14 PM, myvet...@aol.com wrote: The bottom line is what works for some folks does not mean it's going to work for others. I'm only glad that all of you that stopped the meds. things are working out for you. I stopped Gleevec for 26 days back in 2010 and my blood work showed that the cells were popping up again. Guess I'll be on it until I take my ride in my Corvette up into the sky to Corvette heaven. A few weeks ago I was sitting at a stop light with a truck in front of me with a BIG TRAILER HITCH BALL ON THE BACK. He takes of then stops dead, of course I didn't. $6330.00 damage to the front in. Then he takes off. I don't think he was from this Country that's why he left. I just picked up it up a few hours ago. Looks o.k. the paint matches. Silver is a hard color to match, I used to paint Corvettes, I think that's where I got my CML from painting cars.. You all take care, greenie In a message dated 11/9/2012 10:03:52 A.M. Eastern Standard Time, rszim0...@aol.com writes: Along with Richard, I had problems with gleevec. I was diagnosed on February 14, 2005. Went on gleevec after two weeks of hydroxyrea. Was on gleevec for 2 1/2 years before having a brain bleed, so on my own decided to refuse all medication. I had been in complete remission for 2 years at that time. Never missed a dose of gleevec, took it religiously in spite of all side affects. My docs did not agree with me going off this, but went along. I get checked every 3 months for my counts, still in cellular remission. I had a few bcr/abl tests since coming off the medicine. They showed slowly coming out of remission. I've had two more brain bleeds since then, and a final full-blown stroke in March of 2009. Thank goodness I have recovered from the stroke with minimal damage to my left side. Still weak but moveable. I will go back on medication if I come out of cellular remission, but am enjoying every day without it. That is 5 1/2 years without gleevec and counting. Thank you, God! 18's, Susan F. Zimmerman Look among the nations and watch; be utterly astounded! For I will work a work in your days which you would not believe, though it were told you. Hab. 1:5 -Original Message- From: Richard H richard1huff...@comcast.net To: cmlhope cmlhope@googlegroups.com Sent: Thu, Nov 8, 2012 11:17 pm Subject: [CMLHope] Re: update on how many years we have been fighting CML The reason my ONC agreed to let me go without a CML medication is because I was having problems with Gleevec. When we discussed our options in 2008. He and I agreed to see how long it would be before my PCR indicated that I should be on medication. That was 4 years ago and my counts remain at a low level. I have included my history. Richard H. dxd 2/2003 400mg Gleevec 3/2003 Undetectable 11/03 RT-PCR negative 11/04 QT-PCR .003 11/05 RBC 8. Gleevec Vacation 11/06-6/07 Iron infusion 11/06 Transfusions 12/06-5/07 QT-PCR .7 1/08 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Pressent QT-PCR .3 4/09 QT-PCR .15 6/09 QT-PCR .21 9/09 QT-PCR .28 1/10 QT-PCR .1+ 4/10 QT-PCR .468 10/10 QT-PCR .468 2/11 QT-PCR .323 8/011 QT-PCR .261 2//2012 QT-PCR .241 8/12 Next QT-PCR 4/2013 On Thursday, November 8, 2012 5:08:28 AM UTC-6, Draz wrote: Congrats on the 9th year I myself only got diagnosed last year July so 1.5 years almost. I have been using Glivec for 4 days and then got switched to Tasigna, normal levels of white cells within 2 weeks (309 starting value), spleen back to normal in 3 months and complete molecular response was reached last february. I have no idea how long I'll have to take the medication but I'm not experiencing any side effects at all (at start some itchiness but a good scrub and skinpeeling session with doctor fish cleared that up for good) so I have no problem taking them. At the moment I'm enrolled at several extra research options in the hospital and countrywide, which basically means for the next 2 years I'll be doing bonemarrow sampling every third month and bloodwork once per month. My body can handle the damage and if it helps someone else go for it. I have accepted the fact it might be for life (testing/medication/all that jazz) and accepted the fact getting kids will be difficult but I heard that after a period people stop with the medication and try without... is this even advised? - Draz On
[CMLHope]
Everyone that is currently using Gleevec... I have enclosed a web site that describes when the earliest Gleevec would come out of patent. There is also a field that you can put your email adderss in to in order to possibly get some kind of a discount. I am not sure about this so do it at your own discretion. http://leukemia.emedtv.com/gleevec/generic-gleevec.html 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope]
Hi Marty- Thank you, that's quite interesting but I'm not sure I believe this. It states the patent will expire in 2021 (not true) and even if it did expire then, why would they need an email address now? Novartis did an investor's presentation this week in Boston in which they outlined their plans for both Gleevec and Tasigna. According to their presentation Gleevec will come off patent in the US in 2015 and in Europe in 2016. The US government patent website also says 2015. Yes, I am one of the many people who is watching this date very closely and looking forward to the price drop! Here is the link to the presentation. See page 16. http://www.novartis.com/downloads/investors/event-calendar/2012/8-strategy- for-growth.pdf http://www.novartis.com/downloads/investors/event-calendar/2012/8-strategy-f or-growth.pdf The report is also interesting in outlining their strategies for moving patients off Gleevec and on Tasigna to retain market share and profitability. There have been some news articles about this recently as well. Best, Pat Elliott CML patient and patient advocate From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of Marty Gartenberg Sent: Friday, November 09, 2012 9:36 PM To: CMLHope@googlegroups.com Subject: [CMLHope] Everyone that is currently using Gleevec... I have enclosed a web site that describes when the earliest Gleevec would come out of patent. There is also a field that you can put your email adderss in to in order to possibly get some kind of a discount. I am not sure about this so do it at your own discretion. http://leukemia.emedtv.com/gleevec/generic-gleevec.html 18's Marty -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
