Dear Greenie,

HOORAY FOR YOU!!!  I am celebrating and doing the happy dance with you, too!!!


Susan F. Zimmerman




-----Original Message-----
From: Myvety2k via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Fri, Nov 14, 2014 2:31 pm
Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 2 
topics



Thank you Jeanie
 
greenie
 
 

In a message dated 11/14/2014 2:29:41 P.M. Eastern Standard Time, 
cmlhope@googlegroups.com writes:
  
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 


          
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