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]> > 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] 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] 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]> 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]> 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] writes: >>> Happy Veterans Day to all >>> JeanieđČđșđžđșđž >>> >>> Sent from my iPhone >>> >>>> On Nov 11, 2014, at 1:56 PM, Myvety2k via CMLHope >>>> <[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] 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]" >>>> <[email protected]> wrote: >>>> >>>> >>>> [email protected] Google Groups >>>> Topic digest >>>> View all topics >>>> Glivec and studies of stopping the drug - 1 Update >>>> Digest for [email protected] - 6 updates in 2 topics - 1 Update >>>> Glivec and studies of stopping the drug >>>> Richard H <[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 >>>> Digest for [email protected] - 6 updates in 2 topics >>>> "Sue" <[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]] >>>> Sent: Monday, 10 November 2014 6:22 PM >>>> To: Digest recipients >>>> Subject: [CMLHope] Digest for [email protected] - 6 updates in 2 >>>> topics >>>> >>>> >>>> >>>> >>>> [email protected] >>>> >>>> <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 <[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]> >: 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]> >: >>>> 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]> >: 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]> >: >>>> 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]> : 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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