Re: [CMLHope] Re: update on how many years we have been fighting CML
Richard, are your measurements on the international standard or not? My lab at the U of C does not use the international standard so I don't know quite how to judge my numbers also, are there others out there like Richard who went off and have stayed at low levels, but not in a complete remission without numbers increasing? Thanks. Beth -Original Message- From: Richard H To: cmlhope Sent: Thu, Nov 8, 2012 10:17 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. Jeanie<3 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 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: Marty Gartenberg To: cmlhope Sent: Sat, Oct 27, 2012 5:20 pm Subject: Re: [CMLHope] Why are my posts not coming through? Dear Susan, If you should ever need this new drug then at least you know about it. However, I hope that you can just continue to be off all drugs and do well. Susan, you are a miracle! 18's Marty On Sat, Oct 27, 2012 at 4:35 PM, Susan Zimmerman wrote: Thank you Marty for the article on both new drugs. My oncologist told me bosutinib was for something else altogether and he certainly never heard of the newest one either. Makes me think I need to change docs. He's never used anything except gleevec and sprycel. I'm the one still off all meds, and when or if I need it I choose tasigna or one of the two new onesdue to unusual bleeding. We'll see! Think I'll call for my doc's e-mail on Monday and send your article to him. Thanks again. 18's to you, 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: Marty Gartenberg To: cmlhope Sent: Sat, Oct 27, 2012 2:54 pm Subject: Re: [CMLHope] Why are my posts not coming through? Hi Millie, As you can see your post to me did come through. Thank you for your reply. I would like to answer your questions and comments so I will write in between your lines in CAPS. On Sat, Oct 27, 2012 at 12:13 PM, C.M. Houtz wrote: Hi Marty.Please let me know if this post gets through to you. I received your message about the new drug that's out, and was going to write last night and thank you for sending out the information, but got tired, shut down, and went to bed. I've been in a lot of pain lately,
Re: [CMLHope]
Hi Pat, If you read the article it says When Will Generic Gleevec Be Available? The first patent for Gleevec *expires in July 2015*. This is the earliest predictable date that a generic version could become available. So, the article from Novartis is correct, and so is the website I had enclosed. A story about the progress of Gleevec... When Dr. Druker first discovered STI-571 he was trying to find a drug company that would make it in quantity. It seemed that no one was willing to do it. He finally was able to get Novartis to start making it but not yet in quantity. If you remember a man, Zavie Miller, he was one of the first few to get into a trial with STI-571. Both of us had contacted Novartis and told them that if they started making it available we would make sure that the company would be funded. There was a CML site on the internet and we both asked that people buy Novartis stock. At the time the stock was selling at $1,200 a share but the American Registary shares were at $20 a share. All of a sudden everyone started buying those shares and it brought millions into the company. Then came the FDA and everyone started writing in letters and STI-571 was approved in less then one and a half years, and it's name became Gleevec. Take into consideration that it usually takes the FDA about ten years to approve something. I bought a lot of shares at the time for $20 each and it is now hovering around $60.24 per share. I never sold any of this and intend to keep it because I support that company. Most of the people that also purchased it still have every share they first bought because of the support thay show for Novartis. I also want you to understand that I am not on Gleevec or any other TKI because I had a bone marrow transplant almost 23 years ago. However, I always try to support anything that can help CML, and Novartis is doing exactly that. I just wish they would take it easy on the prices that they charge for their TKI's. That is the only peeve I have with the company. Maybe when the patient expires and generics become available the prices will drop so that people in need of it can afford it and live their lives without worrying about getting it to help keep them alive. Please look at the stock, and what it is doing now. http://finance.yahoo.com/q?s=NVS 18's Marty On Sat, Nov 10, 2012 at 12:11 AM, Pat Elliott wrote: > 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 > > > 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/CML
Re: [CMLHope] Re: update on how many years we have been fighting CML
Marcie, I used to fly airplanes but jumping out of and airplane doesn't fly with me. She has more guts then me. greenie In a message dated 11/9/2012 4:43:37 P.M. Eastern Standard Time, margoo...@aol.com writes: 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, _Myvety2k@aol.com_ (mailto: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, _rszim0702@aol.com_ (mailto: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 <_richard1huffman@comcast.net_ (mailto:richard1huff...@comcast.net) > To: cmlhope <_cmlhope@googlegroups.com_ (mailto: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 bloodw
