Marty, very well spoken.
 
greenie
 
 
In a message dated 11/15/2014 8:43:02 A.M. Eastern Standard Time,  
wa2...@gmail.com writes:

Hi Greenie,  


This ship that we are all in command of is a very special ship. Do you  
want to know why? Well, it is always afloat and never sinks. Even if you have  
some bad days, and I can certainly attest to that, then we also have those  
good days. So we seem to be sailing in the right direction.


My father once taught me that every day is a good day as long as none of  
our loved ones dies. I was in that plastic bubble when he came and sat right  
in front of it. I was kind of feeling really bad until he told me that. GOD 
 rest his soul... 


18's,


Marty


On Sat, Nov 15, 2014 at 7:20 AM, Myvety2k via CMLHope  
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:


Well thank you Marcie,  I have this idea, let's make  Skip a Fleet Admiral, 
I'm not sure but I think he as had CML the  longest. Will make Marty 
Admiral that's next in line and I'll be Captain  Dave.  When I first started 
flying real planes my instructor used to  call me Capt. Dave.  So when I 
started 
flying RC airplanes last year I  crashed a lot so one of the guy's would 
call me Danger Dave.  Of course  now I can fly as good as the rest of the guys. 
 But their used to be a  lot of broken plane parts on the field.
 
greenie
 
 


 
In a message dated 11/14/2014 10:51:23 P.M. Eastern Standard Time, 
_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  writes:

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 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > 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,  
_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  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,  
_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com)  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 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:


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_ (mailto: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_ (mailto:cmlhope@googlegroups.com)  writes:

Happy Veterans Day to all
JeanieđŸŒČđŸ‡ș🇾đŸ‡ș🇾

Sent from my iPhone

On Nov 11, 2014, at 1:56 PM, Myvety2k via CMLHope  
<_cmlhope@googlegroups.com_ (mailto: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, 
_ksnwoods@prodigy.net_ (mailto: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_ 
(mailto:cmlhope@googlegroups.com) " <_cmlhope@googlegroups.com_ 
(mailto:cmlhope@googlegroups.com) >  wrote:




 
 
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    *   _Glivec and studies of  stopping the drug_ 
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_Glivec and studies of stopping  the drug _ 
(http://groups.google.com/group/cmlhope/t/839da881a2e6e455?utm_source=digest&utm_medium=email)
 
Richard  H <_rbhuffman1@gmail.com_ (mailto: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:
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email) 
"Sue"  <_hol...@iinet.net.au_ (mailto: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)  
[mailto:cmlhope@googlegroups.com]  
Sent: Monday, 10 November 2014 6:22 PM
To:  Digest recipients
Subject: [CMLHope] Digest for  _cmlhope@googlegroups.com_ 
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* Glivec and studies of stopping the  drug - 5 Updates 

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<http://groups.google.com/group/cmlhope/t/839da881a2e6e455?utm_source=digest
&utm_medium=email>  Glivec and studies of stopping the drug  


Shannon L <_shannonl.camden@gmail.com_ (mailto: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 <_wa2yyx@gmail.com_ (mailto: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  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
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.camden@gmail.com_ (mailto: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 <_rbhuffman1@gmail.com_ (mailto: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.camden@gmail.com_ (mailto: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  


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[CMLHope]
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A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
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A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
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[CMLHope]
A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
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[CMLHope]
A support group of _http://cmlhope.com_ (http://cmlhope.com/) 
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A support group of http://cmlhope.com
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