Marty, that's not a bad idea, he should contact them. greenie In a message dated 11/15/2014 10:31:59 A.M. Eastern Standard Time, [email protected] writes:
Hey Skip, you say "been on all the different chemos just like school I failed every one" Well, you may have been on all of them but you didn't fail. And do you want to know why? Hey your still here after all of these years. I think that sending you those 18's really speaks volumes. Skip you need to make awareness of CML as probably the longest person in the world alive with CML. Ever think about contacting the Guiness world book of records? 18's, Marty On Sat, Nov 15, 2014 at 8:46 AM, Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Marty, very well spoken. greenie In a message dated 11/15/2014 8:43:02 A.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Hi Greenie, This ship that we are all in command of is a very special ship. Do you want to know why? Well, it is always afloat and never sinks. Even if you have some bad days, and I can certainly attest to that, then we also have those good days. So we seem to be sailing in the right direction. My father once taught me that every day is a good day as long as none of our loved ones dies. I was in that plastic bubble when he came and sat right in front of it. I was kind of feeling really bad until he told me that. GOD rest his soul... 18's, Marty On Sat, Nov 15, 2014 at 7:20 AM, Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Well thank you Marcie, I have this idea, let's make Skip a Fleet Admiral, I'm not sure but I think he as had CML the longest. Will make Marty Admiral that's next in line and I'll be Captain Dave. When I first started flying real planes my instructor used to call me Capt. Dave. So when I started flying RC airplanes last year I crashed a lot so one of the guy's would call me Danger Dave. Of course now I can fly as good as the rest of the guys. But their used to be a lot of broken plane parts on the field. greenie In a message dated 11/14/2014 10:51:23 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Greenie, we are all so thrilled you are doing well. If Marty is our captain, I think you must be his first officer! Marcie Sent from my iPad On Nov 14, 2014, at 9:38 PM, Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: I would like to thank each and everyone of you for your warm hearted replies. greenie In a message dated 11/14/2014 9:36:20 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Thank you Marty, I should have added that I went into remission within 6 months after starting Gleevec. I was having to get blood work every 3 months now I get blood work every 6 months. I've had 27 BMB's so I'm glad they do it by testing your blood. We all have our good days and then their are a few bad days to so like my late Aunt used to say just take one day at a time. And that's what I do. Today was one of those bad days but tomorrow I'm sure will be better it always is. Everyone please take care of yourself's I'm so lucky my wife Grace who takes good care of me. greenie In a message dated 11/14/2014 7:35:36 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Greenie, Hey, what took you so long? I am thrilled to hear this wonderful news. You are blessed. 18's, Marty On Fri, Nov 14, 2014 at 2:29 PM, icandoallttc via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Yahoo Greenie So happy for you!! Blessing Jeanie Sent from my iPhone On Nov 11, 2014, at 4:05 PM, Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: I received my results back from my 6 month blood work today and I'm Negative on BCR-ABL. greenie In a message dated 11/11/2014 2:14:49 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Happy Veterans Day to all JeanieđČđșđžđșđž Sent from my iPhone On Nov 11, 2014, at 1:56 PM, Myvety2k via CMLHope <[email protected]_ (mailto:[email protected]) > wrote: Thank you Elizabeth, I served 6 years in the Navy. greenie In a message dated 11/11/2014 1:43:34 P.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Thinking of you all. Nick is critically anemic due to Gleevec. Hope Richard H., Shannon, Bobbie Doyle, and all keep up your sharing of info. thanks so much Marty for the reports from the clinical trials to reduce or stop Gleevec. Thank you to all Veterans on this day. Elizabeth Woods On Tuesday, November 11, 2014 4:32 AM, "[email protected]_ (mailto:[email protected]) " <[email protected]_ (mailto:[email protected]) > wrote: [email protected]_ (https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics) _Google Groups_ (https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview) (https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overv iew) Topic digest _View all topics_ (https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlhope/topics) * _Glivec and studies of stopping the drug_ (https://us-mg205.mail.yahoo.com/neo/launch?.partner=sbc&.rand=8fv0d9j9nknkk#group_thread_0) - 1 Update * _Digest for [email protected] - 6 updates in 2 topics_ (https://us-mg205.mail.yahoo.com/neo/launch?.partner=sbc&.rand=8fv0d9j9nknkk#grou p_thread_1) - 1 Update _Glivec and studies of stopping the drug _ (http://groups.google.com/group/cmlhope/t/839da881a2e6e455?utm_source=digest&utm_medium=email) Richard H <[email protected]_ (mailto:[email protected]) >: Nov 10 09:05PM -0800 Yes. This was the reason I stopped Gleevec. I was also had Iron Deficient Anemia. I had to infuse the iron to help try to recover my RBC count because was below 9. I was also still taking Gleevec while doing this. On Monday, November 10, 2014 12:56:18 AM UTC-6, Shannon L wrote: _Back to top_ (https://us-mg205.mail.yahoo.com/neo/launch?.partner=sbc&.rand=8fv0d9j9nknkk#digest_top) _Digest for [email protected] - 6 updates in 2 topics _ (http://groups.google.com/group/cmlhope/t/6cf9af24d4b963a7?utm_source=digest&utm_medium =email) "Sue" <[email protected]_ (mailto:[email protected]) >: Nov 10 07:13PM +0800 Hi Shannon There is also the Destiny Trial in the UK which is reduction down to 200mg for 12 months and then stop (there has been no report until after Dec 2014) The next Trial is named Spirit3 to see if people are being over medicated The Australian Survey will have 600 participants Sue Hurt (Australian) From: [email protected]_ (mailto:[email protected]) [mailto:[email protected]] Sent: Monday, 10 November 2014 6:22 PM To: Digest recipients Subject: [CMLHope] Digest for [email protected]_ (mailto:[email protected]) - 6 updates in 2 topics [email protected]_ (mailto:[email protected]) <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overv iew> Google Groups <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overv iew> Topic digest View all topics * Glivec and studies of stopping the drug - 5 Updates * Glivec and studies of stopping the drug - 1 Update <http://groups.google.com/group/cmlhope/t/839da881a2e6e455?utm_source=digest &utm_medium=email> Glivec and studies of stopping the drug Shannon L <[email protected]_ (mailto:[email protected]) <mailto:[email protected]> >: Nov 09 03:58AM -0800 Hi All My name is Shannon I live in Sydney Australia Its been awhile since I have posted. I was diagnosed 1998 and after a few years went onto sti571 (glivec) and achieved remission within 2 months and I have been it ever since about 14 yrs. They are inviting participants (in Australia) to take a survey of stopping glivec I image they will do a study of stopping the drug. My question is does everyone know of the study done in USA of the stats of stopping they have indicated in this survey info that the percentage of success is 30-40% to me that SEEMS LOW what do you think. I do have some problems but I am stable on glivec. I hope this emil finds everyone well Shannon Marty Gartenberg <[email protected]_ (mailto:[email protected]) <mailto:[email protected]> >: Nov 09 07:46AM -0500 Hi Shannon, there is a study called the STIM that is going on in the UK and it talks about Imatinib being stopped. It is kind of lengthily however it does go into detail. Good luck to you, and I have always said there will be a cure for CML in our lifetimes. If you follow any of my posts I always end them with two numbers. They are 18 which is the symbol for life. 18's to you Shannon Marty PS Shannon I encourage you to post any time that you like. There will usually be someone that may be able to answer your questions. Besides that we are all here to learn from and help each other Can Imatinib Be Stopped? Goodwin, Peter Article Outline [image: Collapse Box]Author Information ASH Abstracts 186 and 187 SAN FRANCISCOâThe early promise of the tyrosine kinase inhibitor (TKI) imatinib for treating chronic myeloid leukemia (CML) has continued to be fulfilled following the release of seven-year follow-up data at the ASH Annual Meeting here from the International Randomized Study of Interferon versus STI 571 (imatinib) (IRIS) with 553 patients. With diminishing rates of progression each year beyond year three, the case for stopping imatinib altogether was also discussed at the meeting following release of results from two studies in which the drug was discontinued among patients who had achieved enduring complete molecular responses to it for more than two years. IRIS investigator Stephen G. O'Brien MD, PhD, Senior Lecturer in Experimental Hematology at Northern Institute for Cancer Research of University of Newcastle upon Tyne, UK, gave the latest IRIS results to a packed audience at the meeting, showing an event-free survival rate of 81%, freedom from progression to accelerated phase/blast crisis of 93%, and an estimated overall survival rate of 86%, from the standard dose of 400 mg imatinib daily. And in the presentation that followed, François-Xavier Mahon, MD, Professor at Victor SĂ©galen University in Bordeaux, France, released early data from the Stop Imatinib (STIM) study, noting that remissions continued in about half of the patients after investigational discontinuation of imatinib therapyâwith a non-significant trend showing that patients previously treated with interferon were more likely to be among those whose remissions persisted without drugs. Dr. O'Brien said that in IRIS the projected cytogenetic response rate to imatinib (by Kaplan Meyer analysis) was 82%, and that after seven years of follow-up 60% of patients were still on imatinib, with 57% of all patients still in complete cytogenetic response (CCR). The impression that CCR holds the key to a âcureâ of CML was strengthened by comments he made after his talk: âIt seems that if you maintain your CCR for, say, three years, the chance of regressing at that point is essentially zero. So, achieving a CCR is, I guess, what we call a âsafe havenâ for the majority of patients: If you've achieved that and sustained it for, say, three years, you're in pretty good shape and the chance of progressing is virtually nil,â he said. Back to Top <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_ Stopped_.1.aspx# <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_Stopped_.1.aspx> > | Article Outline Diminishing Rates of Relapse These words reflect the diminishing rates of relapse observed in the IRIS study in successive years. Rates of progression to accelerate phase or blast crisis each year were low at all timesâwith rates rising in the first two years (1.5% in the first year; 2.8% in the second year) and then diminishing after that (1.6%, 0.9%, 0.5%, 0%, 0.4% in years 3, 4, 5, 6, and 7, respectively)âwith only a single patient having disease progression to accelerate phase or blast crisis between years six and seven. [image: Figure. FRANOIS-XAVI...] Figure. FRANOIS-XAVI... Image Tools The total annual event rates, including loss of molecular complete remission and death, were similarly low (3.3% and 7.5%) in years one and two, and diminished thereafter (4.8%, 1.7%, 0.8%, 0.3%, and 2.0% in years three through seven). These data only apply, of course, to the majority of patients who prove sensitive to imatinib, and Dr. O'Brien noted that many patients who are resistant or refractory to the TKI are now candidates for other drugs and in some cases, allogeneic transplantation. Dr. O'Brien summed up his feelings about the current state of the art concerning imatinib therapy for CML: âI think it's encouraging on two fronts. One is that there's nothing new in years six and seven to cause alarm in terms of safety events. And the second isâparticularly in patients who achieved a complete cytogenetic responseâI think we can be very reassured that the vast majorityâespecially if you have that CCR for three yearsâare doing extremely well, with very few of those progressing.â Back to Top <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_ Stopped_.1.aspx# <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_Stopped_.1.aspx> > | Article Outline STIM Study Encouraging data on long-term remission of CML among patients treated with imatinib gave rise to the French initiative to conduct a pilot study with 15 patients looking at stopping imatinib, and following this the multicenter STIM study with 50 patients, which began in July 2007 but which has already yielded earlyâbut provocativeâevidence that remission from CML can continue even after imatinib is stopped. Dr. Mahon said that patients were recruited into these studies only if they had received imatinib for at least three years and achieved sustained complete molecular remission (CMR) for two years before experimentally stopping the drug. The definition of sustained CMR was strict: BCR-ABL/ABL had to be below a detection threshold corresponding to a 5-log reduction (undetectable signal using RQ-PCR) for at least two years. Molecular relapse was defined as RQ-PCR positivity detected in two successive assays, and patients who relapsed were then retreated with imatinib (successfully) at a dose of 400 mg daily. In the latest follow-up of the pilot study, Dr. Mahon said that seven out of 15 patients had relapse within six months and all were restored to CMR by re-treatment with imatinib. The remaining eight patients were still in CMR a median of 37 months after stopping the drug. All of the patients in the pilot study had been treated with interferon before receiving imatinib, most of them responding to it. This raised the suggestionâwhich Dr. Mahon discussed in his talk at the ASH meetingâthat interferon may have conferred a benefit among patients who were subsequently treated with imatinib. Half of the patients in the STIM study had been pretreated with interferon, and some provocativeâbut as yet not statistically significantâdata have emerged showing an advantage among those who had previously received interferon before going on to imatinib therapy. By July 2008, 10 of the 15 patients who were still in CMR had received prior interferon. The latest assessment from a slide Dr. Mahon presented showed that 27 out of 49 patients followed for more than six months had had disease relapse; 14 of these had received only imatinib and the remaining 13 had been previously treated with interferon, while only two of the seven patients in STIM who have so far continued in CMR for 14 months had been treated with imatinib alone. Dr. Mahon summed up his interim conclusions by stating that they have confirmed that CMR can be sustained after stopping imatinib, and that although there seems to be an [as yet statistically unconfirmed] advantage among the patients who received interferon, it is possible to stop the drug in patients with sustained CMR even among those treated with imatinib alone. He reported that the probability of survival without molecular relapse nine months after discontinuing imatinib was 46%, with the curve looking flat, so far, out to 15 months. Importantly, the STIM study found that all patients were sensitive after imatinib re-challenge. Back to Top <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_ Stopped_.1.aspx# <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_Stopped_.1.aspx> > | Article Outline âRecurring Questionâ When Dr. O'Brien was asked for a comment on Dr. Mahon's conclusion from the initial pilot study and the early results from the STIM study, he said, âI'm fascinated by it. There's probably a bit of a cultural difference, I think, because most of my patients in the UKâwhen I suggest [stopping]âdon't want to hand their pills back, and want to carry on. [image: Figure. STEPHEN G. O...] Figure. STEPHEN G. O... Image Tools âI think that's driven by the fact that they are tolerating the drug well. There are no safety concerns emerging with the long-term follow-up. And it's obviously having good efficacy in them. But this is a recurring question that I think we'll see more and more ofâand the French study is very important.â Back to Top <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_ Stopped_.1.aspx# <http://journals.lww.com/oncology-times/Fulltext/2009/02101/Can_Imatinib_Be_Stopped_.1.aspx> > | Article Outline Low Toxicities In the UK, he noted, the preference for continuing imatinib could be explained by relatively low toxicities, which were not a significant barrier to its use, with neutropenia and thrombocytopenia being minor toxicities that are merely irritating over time. âGI toxicity like diarrhea, for example, and a feeling of fatigue and malaise, sometimes, and muscle cramps can be troublesome in some patients over the years. But they're usually minor toxicities which, after many years, become rather wearing, rather than major toxicities,â he said. The bottom line for clinicians treating their patients with CML, according to Dr. O'Brien's interpretation of his IRIS results, is that imatinib at 400 mg remains the current standard for first-line drug therapy, even though there are exciting data among patient cohorts treated with nilotinib and dasatinib first-line, with cytogenetic response rates in excess of 95%. âI thinkâfor the futureâwhere we're going is to do comparative Phase III studies with the tyrosine kinase inhibitors in newly diagnosed patients to see if we can improve on imatinib. Because although the imatinib data is reassuring, it's clear that at six or seven years, perhaps a third of patients are not continuing on imatinib,â he said. *Supported by funding from Genentech BioOncology and Biogen Idec.* © 2009 Lippincott Williams & Wilkins, Inc. Shannon L <[email protected]_ (mailto:[email protected]) <mailto:[email protected]> >: Nov 09 03:52PM -0800 Hi Everyone Thankyou Marty for the research information it was very informative, so they are combining stopping with interferon unfortunately I can't tolerate it I remember the first time before glivec. I hope everyone is having a wonderful day. On Sunday, November 9, 2014 10:58:55 PM UTC+11, Shannon L wrote: Richard H <[email protected]_ (mailto:[email protected]) <mailto:[email protected]> >: Nov 09 09:33PM -0800 What a great record. You didn't indicate how much Gleevec you are taking. I have read that several CMLers are taking reduced amounts and reaming in remission. I have seen a post by a lady that said see was very petite and she was only taking 100mg instead of 400mg. I don't know the percentage or of a combined results From the different studies I read sometime ago I believe the range you have is consistent with what I have read. You can read my results below. My ONC told be I needed to end my almost 6 year vacation and I am trying to requalify for a lower copay for Bosutinib. I have tested and they found no mutation. I have studied the side effects and I will be meeting with a Nurse to go over the side effects. Due to my other problems I am concerned about all the interactions with those Meds. I hope this has helped you. 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 .007 Gleevec 1/08 -5/08 Procrit 8/08-11/08 Gleevec Vacation 7/08-Present QT-PCR .003 4/09 QT-PCR .0015 6/09 QT-PCR .0021 9/09 QT-PCR .0028 1/10 QT-PCR .001 4/10 QT-PCR .00468 10/10 QT-PCR 1.049% 2/11 QT-PCR .0612% 8/11 QT-PCR 2.616 % 2/12 QT-PCR 2.410% 8/12 RT-PCR 9.183% 4/13 RT-PCR 4.57% 6/13 RT-PCR 10.183% 10/13 RT-PCR 10.577% 2/14 RT-PCR 16.050% 5/14 On Sunday, November 9, 2014 5:58:55 AM UTC-6, Shannon L wrote: Shannon L <[email protected]_ (mailto:[email protected]) <mailto:[email protected]> >: Nov 09 10:56PM -0800 Hi Richard H Yes Glivec 400 mg has been good to me I have been very stable on the drug, Wow 6 years off glivec thank you so much for sharing your results just a question in your first holiday off glivec you had an iron injection is this because of cml? I am contemplating a small break as my stomach problems seem to be increasing and are at times very debilitating. I know I have been on many meds prior to glivec (chemo twice, cytarabine, hydroxia, and interferon) and Im sure my body sometimes struggles with it all. On Sunday, November 9, 2014 10:58:55 PM UTC+11, Shannon L wrote: Back to top <http://groups.google.com/group/cmlhope/t/22ca310a00448c54?utm_source=digest &utm_medium=email> Glivec and studies of stopping the drug [email protected]_ (mailto:[email protected]) <mailto:[email protected]> : Nov 09 07:32AM -0500 _Back to top_ (https://us-mg205.mail.yahoo.com/neo/launch?.partner=sbc&.rand=8fv0d9j9nknkk#digest_top) You received this digest because you're subscribed to updates for this group. You can change your settings on the _group membership page_ (https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!forum/cmlho pe/join) . 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For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of _http://cmlhope.com_ (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 [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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