Hi Greenie Very glad to hear your results. Best wishes Shannon On Wednesday, November 12, 2014 8:05:33 AM UTC+11, greenie 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, > cml...@googlegroups.com <javascript:> writes: > > Happy Veterans Day to all > JeanieđČđșđžđșđž > > Sent from my iPhone > > On Nov 11, 2014, at 1:56 PM, Myvety2k via CMLHope <cml...@googlegroups.com > <javascript:>> 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, > ksnw...@prodigy.net <javascript:> 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, "cml...@googlegroups.com > <javascript:>" <cml...@googlegroups.com <javascript:>> wrote: > > > cmlhope@googlegroups.com > <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> > [image: > https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview] > > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > > 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 cmlhope@googlegroups.com - 6 updates in 2 topics > > <https://us-mg205.mail.yahoo.com/neo/launch?.partner=sbc&.rand=8fv0d9j9nknkk#group_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 <rbhuf...@gmail.com <javascript:>>: 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 cmlhope@googlegroups.com - 6 updates in 2 topics > <http://groups.google.com/group/cmlhope/t/6cf9af24d4b963a7?utm_source=digest&utm_medium=email> > "Sue" <hol...@iinet.net.au <javascript:>>: 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: cml...@googlegroups.com <javascript:> [mailto:...@googlegroups.com > <javascript:>] > Sent: Monday, 10 November 2014 6:22 PM > To: Digest recipients > Subject: [CMLHope] Digest for cml...@googlegroups.com <javascript:> - 6 > updates in 2 topics > > > > > cml...@googlegroups.com <javascript:> > > < > 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 <shannon...@gmail.com <javascript:> <mailto:shan...@gmail.com > <javascript:>> >: 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 <javascript:> <mailto...@gmail.com > <javascript:>> >: 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 <shannon...@gmail.com <javascript:> <mailto:shan...@gmail.com > <javascript:>> >: 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 <rbhuf...@gmail.com <javascript:> <mailto:r...@gmail.com > <javascript:>> >: 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 <shannon...@gmail.com <javascript:> <mailto:shan...@gmail.com > <javascript:>> >: 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 > > > myve...@aol.com <javascript:> <mailto:...@aol.com <javascript:>> : 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/cmlhope/join> > . > To unsubscribe from this group and stop receiving emails from it send an > email to cmlhope+u...@googlegroups.com <javascript:>. > > > -- > -- > [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 cml...@googlegroups.com <javascript:> > To unsubscribe from this group, send email to > cmlhope-u...@googlegroups.com <javascript:> > 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 cmlhope+u...@googlegroups.com <javascript:>. > For mor > > ...
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