Happy Thanksgiving to all.
Sent from my iPhone > On Nov 22, 2014, at 7:20 AM, Myvety2k via CMLHope <cmlhope@googlegroups.com> > wrote: > > Thank you Beth, Your right about our group. > > greenie > > In a message dated 11/22/2014 2:59:57 A.M. Eastern Standard Time, > cmlhope@googlegroups.com writes: > Ditto what everyone else said..greenie...so glad you are in remission!!!!! > and glad you have your sweetie who takes such good care of you! > > Sitting back and catching up on some of my emails..it's such a nice thing to > read so many supportive outreaching..stay close...emails...this is such a > lovely group..and I wish all of you..each and everyone..a pain free, peaceful > Thanksgiving..I am thankful for all of you..... > > Fondly,Beth > > > -----Original Message----- > From: icandoallttc via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Fri, Nov 14, 2014 1:29 pm > Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 2 > topics > > Yahoo Greenie > So happy for you!! > Blessing > Jeanie > > Sent from my iPhone > >> On Nov 11, 2014, at 4:05 PM, Myvety2k via CMLHope <cmlhope@googlegroups.com> >> 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, >> cmlhope@googlegroups.com writes: >> Happy Veterans Day to all >> Jeanie >> >> Sent from my iPhone >> >>> On Nov 11, 2014, at 1:56 PM, Myvety2k via CMLHope >>> <cmlhope@googlegroups.com> 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, >>> ksnwo...@prodigy.net 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, "cmlhope@googlegroups.com" >>> <cmlhope@googlegroups.com> wrote: >>> >>> >>> cmlhope@googlegroups.com Google Groups >>> Topic digest >>> View all topics >>> Glivec and studies of stopping the drug - 1 Update >>> Digest for cmlhope@googlegroups.com - 6 updates in 2 topics - 1 Update >>> Glivec and studies of stopping the drug >>> Richard H <rbhuffm...@gmail.com>: 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 >>> Digest for cmlhope@googlegroups.com - 6 updates in 2 topics >>> "Sue" <hol...@iinet.net.au>: 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: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] >>> Sent: Monday, 10 November 2014 6:22 PM >>> To: Digest recipients >>> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 6 updates in 2 >>> topics >>> >>> >>> >>> >>> cmlhope@googlegroups.com >>> >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> >>> Google Groups >>> >>> <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> >>> >>> >>> 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 <shannonl.cam...@gmail.com <mailto:shannonl.cam...@gmail.com> >: >>> 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 <wa2...@gmail.com <mailto:wa2...@gmail.com> >: 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 FRANCISCO—The 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 Ségalen 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 >>> therapy—with 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 “cure” of CML was strengthened >>> by comments he made after his talk: >>> >>> “It 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 ‘safe haven’ 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,” 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 times—with 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)—with 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: “I 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 is—particularly in patients >>> who achieved a complete cytogenetic response—I think we can be very >>> reassured that the vast majority—especially if you have that CCR for three >>> years—are doing extremely well, with very few of those progressing.” >>> 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 early—but provocative—evidence 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 >>> suggestion—which Dr. Mahon discussed in his talk at the ASH meeting—that >>> 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 provocative—but as yet not statistically significant—data 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 >>> ‘Recurring Question’ >>> >>> 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, >>> “I'm fascinated by it. There's probably a bit of a cultural difference, I >>> think, because most of my patients in the UK—when I suggest >>> [stopping]—don't want to hand their pills back, and want to carry on. >>> [image: Figure. STEPHEN G. O...] >>> Figure. STEPHEN G. O... >>> Image Tools >>> >>> “I 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 of—and the French study is >>> very important.” >>> 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. >>> >>> “GI 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,” 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%. >>> >>> “I think—for the future—where 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,” he said. >>> >>> *Supported by funding from Genentech BioOncology and Biogen Idec.* >>> >>> © 2009 Lippincott Williams & Wilkins, Inc. >>> >>> >>> >>> Shannon L <shannonl.cam...@gmail.com <mailto:shannonl.cam...@gmail.com> >: >>> 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 <rbhuffm...@gmail.com <mailto:rbhuffm...@gmail.com> >: 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 <shannonl.cam...@gmail.com <mailto:shannonl.cam...@gmail.com> >: >>> 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 >>> >>> >>> myvet...@aol.com <mailto:myvet...@aol.com> : Nov 09 07:32AM -0500 >>> Back to top >>> You received this digest because you're subscribed to updates for this >>> group. 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