I knew I could count on you, Marty!!!!  These are perfect, seen before, but 
very very pertinent!
Thanks also for the kudos.  Everyone, let's enjoy those times He carries 
us....so very often.




Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5



-----Original Message-----
From: Marty Gartenberg <wa2...@gmail.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, Nov 18, 2014 5:50 pm
Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 2 
topics


Hi Susan,


Here are those footprints you wanted.


18's,


Marty

Footprints in the Sand







On Tue, Nov 18, 2014 at 9:24 AM, 'Susan Zimmerman' via CMLHope 
<cmlhope@googlegroups.com> wrote:

So glad you are negative, too, Greenie!!!  Let's do the happy dance 
together....wish I knew how to put footprints on here!


18's,

Susan 





-----Original Message-----
From: Myvety2k via CMLHope <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@googlegroups.com>
Sent: Tue, Nov 11, 2014 4:05 pm
Subject: Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 2 
topics



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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