[CMLHope] Flu shots yearly ?

2015-06-17 Thread 'Icandoallttc' via CMLHope
I could find no information on not having flu shots yearly.  They recommend 
that the elderly, children, and anyone at risk take flu shots yearly.  
The reason being that the flu strains change from year to year. 

Prayers & Blessings Jeanie 🐟🐟18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

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Re: [CMLHope] Stopping Gleevec and BMB X4 !

2015-06-17 Thread 'Icandoallttc' via CMLHope
Not every one gets to pcr on tkis.  I never did on gleevec.   It quit on me 
instead of me quitting.  
I finally reached pcr on sprycel.   If you do quit keep a close check on your 
counts. 
Remember there are more tkis you can take if you have problems on down the 
line. 
I am now on the newest one out.  
Live each day for that day and enjoy it to its fullest. I have been taking tkis 
for 11 years as of last January and I'm still here. 


Prayers & Blessings Jeanie 🐟🐟18,s
Dx 1/2004
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Jun 17, 2015, at 8:35 AM, ANGELYN ESDERS  wrote:
> 
> Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. 
> Whatever will be, will be, and everything is a learning experience. It just 
> feels strange after 14+ years.
> 
> In other news, Monday a new platelet dr. decided to do a BMB.
> You won't believe this: It took him FOUR tries to get a viable sample. Never 
> had this happen before. Four crunching entries.
> Sort of like having four BMB's at the same time. Afterwards I was almost in a 
> state of shock and could not stand, nauseous, very stressed. (In Canada we do 
> not get sedation or morphine for this procedure.) It took me 90 minutes to 
> de-stress and had to drive myself home because he had not warned me that he 
> intended to do this and to bring a driver along. There's one doctor who will 
> NOT be doing another BMB on me!! I think he needs a few more lessons in how 
> to do it.
> 
> Anyway, I am finestill low platelets. Life goes on.
> Angie
> 
>  
> From: Marty Gartenberg 
> To: cmlhope@googlegroups.com 
> Sent: Wednesday, June 17, 2015 7:29 AM
> Subject: Re: [CMLHope] Stopping Gleevec
> 
> Hi Angie,
> 
> You are not thee only one that has stopped your TKI and felt that way. 
> sometimes something that we take as far as any TKI's ends up being a crutch 
> for us and we always seem to worry if this or that will come back to haunt 
> us. It is a normal human response and we worry about it.
> 
> Angie, since your really feeling better without the Gleevec then you should 
> learn to live your life in the best way that you can.
> 
> I have seen this many times before. A man that both Zavie and I knew was on 
> Alpha Interferon and suffered immensely from it's horrible side effects. He 
> suffered for many years and when he was finally PCRU everyone told him to 
> stop using it anymore but he still continued still suffering because it had 
> become a crutch for him. He had the same feelings as you now have and after a 
> lot of coaching from everyone he finally stopped it. 
> 
> He has been off of it for many years and no reoccurrence of CML ever came 
> back to him. His system finally "burned out" his CML.
> 
> Remember that everything in life has a double edged soared. If you do 
> something will it come back to haunt you or if you don't do something will it 
> come back to haunt you??
> 
> I just can't live my life that way, and if something does come back then I 
> will deal with it.
> Remember me telling everyone that Leukemia is both a disease of not only the 
> body but it also poisons the mind.
> 
> Angie, why not start writing a diary and put everything in there that you 
> have gone through the day? I do it and it lets me reflect about what I could 
> have done better or worse during the day. I call it my frustrations and how 
> to deal with them, and it really works for me as I am sure it will also work 
> for you or anyone else. By the way I see that Giora sent you his response. 
> read it if you haven't as yet.
> 
> Here is something called "expect the best" Please read it and it will also 
> help you with yourself.
> 
> One last thing. I am not a doctor but have gone through a lot of things in my 
> life health wise as you already know. Have you ever wondered why I am still 
> alive? I did at one time but maybe it is because I try helping others as a 
> promise that I once made to GOD and also received help myself from others. It 
> is a two way street, or I am the luckiest son of a bitch on this planet ???
> 18's,
> 
> Marty 
> 
>
> EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. 
> TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF 
> YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER 
> MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.
> WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF 
> MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING 
> INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU 
> THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.
> EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE 
> BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE 
> SUCCESSFUL OUTCOME...
> FOCUS...
>  18's,
> Marty
> 
> 
> 
> On Tu

RE: [CMLHope] Digest for cmlhope@googlegroups.com - 3 updates in 1 topic

2015-06-17 Thread David Bradley
Angelyn: I was in complete molecular remission.  I stopped Gleevec in December 
to commence another medication for my CLL.  A PCR was done in March and I was 
positive for CML.  I went back on Gleevec (concurrently administered with a 
reduced dose of my CLL med), and now, 3 months later, I have a major molecular 
response.  --David from Michigan

To: cmlhope@googlegroups.com
From: cmlhope@googlegroups.com
Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 3 updates in 1 topic
Date: Wed, 17 Jun 2015 10:21:09 +



  

  

  

  
  cmlhope@googlegroups.com

  
  
Google Groups
  
  

  

  

  
  



  
  
  
Topic digest
  
  

  
View all topics
  


  
  

  
  Stopping Gleevec -
  3 Updates

  
  




  
  
  
  

  Stopping Gleevec

  
  

  

  

  ANGELYN ESDERS : Jun 17 01:02AM




I just received an email from my oncologist telling me that it is safe 
for me to stop Gleevec for 3 months.I started Gleevec in January 2001, and 
reached cytogenic remission in July 2001. I've continued on 300mg per day.I was 
in the study for 12  years.I feel like it is my safety net between wellness and 
reoccurrence of CML.I am almost afraid to stop it. I no longer have any side 
effects from it.Who has stopped Gleevec, and what have you experienced as a 
result of doing so?Thanking you all for your input...Angie in Canada


  

  

  Giora Sharf : Jun 17 09:35AM +0300




Hi Angie

 

We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 
10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without 
treatment doing very well, monthly PCR are all in deep MR4.5 response.

 

I fully understand your concern, I had the same issues and didn’t agree to stop 
for couple of years. When I saw the data indicating that all the patients who 
stop and relapse (about 50-60 %) respond well when they restart treatment, I 
agreed to stop. I also didn’t have severe side effects on Glivec, but I am 
happy to be drug free and do very strict monthly or 6 weeks monitoring. Please 
remember if you decide to stop- the most important thing is a very strict 
monthly PCR on international scale. (IS)

 

Good luck whatever you decide

 

Giora

 

 

 

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
ANGELYN ESDERS

Sent: Wednesday, June 17, 2015 4:03 AM

To: cmlhope@googlegroups.com

Subject: [CMLHope] Stopping Gleevec

 

 

 

I just received an email from my oncologist telling me that it is safe for me 
to stop Gleevec for 3 months.

 

I started Gleevec in January 2001, and reached cytogenic remission in July 
2001. 

 

I've continued on 300mg per day.

 

I was in the study for 12  years.

 

I feel like it is my safety net between wellness and reoccurrence of CML.

 

I am almost afraid to stop it. I no longer have any side effects from it.

 

Who has stopped Gleevec, and what have you experienced as a result of doing so?

 

Thanking you all for your input...

 

Angie in Canada

 

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  ANGELYN ESDERS : Jun 17 10:12AM




Thank you for your kind letter, Giora. I remember you from years back. 
You live in Tel Aviv? I am so happy to hear that you are doing so well. I feel 
encouraged.Angie

   From: Giora Sharf 

 To: cmlhope@googlegroups.com 

 Sent: Wednesday, June 17, 2015 2:35 AM

 Subject: RE: [CMLHope] Stopping Gleevec

   

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#yiv1061552755 span.yiv1061552755MsoHyperlink 

Re: [CMLHope] Stopping Gleevec and BMB X4 !

2015-06-17 Thread ANGELYN ESDERS
Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. 
Whatever will be, will be, and everything is a learning experience. It just 
feels strange after 14+ years.
In other news, Monday a new platelet dr. decided to do a BMB. You won't believe 
this: It took him FOUR tries to get a viable sample. Never had this happen 
before. Four crunching entries. Sort of like having four BMB's at the same 
time. Afterwards I was almost in a state of shock and could not stand, 
nauseous, very stressed. (In Canada we do not get sedation or morphine for this 
procedure.) It took me 90 minutes to de-stress and had to drive myself home 
because he had not warned me that he intended to do this and to bring a driver 
along. There's one doctor who will NOT be doing another BMB on me!! I think he 
needs a few more lessons in how to do it.
Anyway, I am finestill low platelets. Life goes on.Angie
   From: Marty Gartenberg 
 To: cmlhope@googlegroups.com 
 Sent: Wednesday, June 17, 2015 7:29 AM
 Subject: Re: [CMLHope] Stopping Gleevec
   
Hi Angie,
You are not thee only one that has stopped your TKI and felt that way. 
sometimes something that we take as far as any TKI's ends up being a crutch for 
us and we always seem to worry if this or that will come back to haunt us. It 
is a normal human response and we worry about it.
Angie, since your really feeling better without the Gleevec then you should 
learn to live your life in the best way that you can.
I have seen this many times before. A man that both Zavie and I knew was on 
Alpha Interferon and suffered immensely from it's horrible side effects. He 
suffered for many years and when he was finally PCRU everyone told him to stop 
using it anymore but he still continued still suffering because it had become a 
crutch for him. He had the same feelings as you now have and after a lot of 
coaching from everyone he finally stopped it. 
He has been off of it for many years and no reoccurrence of CML ever came back 
to him. His system finally "burned out" his CML.
Remember that everything in life has a double edged soared. If you do something 
will it come back to haunt you or if you don't do something will it come back 
to haunt you??
I just can't live my life that way, and if something does come back then I will 
deal with it.Remember me telling everyone that Leukemia is both a disease of 
not only the body but it also poisons the mind.
Angie, why not start writing a diary and put everything in there that you have 
gone through the day? I do it and it lets me reflect about what I could have 
done better or worse during the day. I call it my frustrations and how to deal 
with them, and it really works for me as I am sure it will also work for you or 
anyone else. By the way I see that Giora sent you his response. read it if you 
haven't as yet.
Here is something called "expect the best" Please read it and it will also help 
you with yourself.
One last thing. I am not a doctor but have gone through a lot of things in my 
life health wise as you already know. Have you ever wondered why I am still 
alive? I did at one time but maybe it is because I try helping others as a 
promise that I once made to GOD and also received help myself from others. It 
is a two way street, or I am the luckiest son of a bitch on this planet ???18's,
Marty 
   EXPECT THE BEST, MINDOVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. 
TO HAVE SUCCESS ATANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU 
EXPECT THE WORSETHEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF 
YOU EXPECT THEBEST THEN THAT IS WHAT YOU WILL GET.WHAT WE HAVE TO LEARNTO DO IS 
TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT ANDNOT TO 
DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY.WHEN 
YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVESINTO THE 
AREA OF POSSIBILITY.EVERY GREAT THINGEVENTUALLY BECOMES POSSIBLE FOR YOU. MY 
BELIEF AT THE BEGINNING OF A DOUBTFULUNDERTAKING IS THE ONE THING THAT INSURES 
THE SUCCESSFUL OUTCOME...FOCUS... 18's,Marty


On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS  wrote:

I just received an email from my oncologist telling me that it is safe for me 
to stop Gleevec for 3 months.I started Gleevec in January 2001, and reached 
cytogenic remission in July 2001. I've continued on 300mg per day.I was in the 
study for 12  years.I feel like it is my safety net between wellness and 
reoccurrence of CML.I am almost afraid to stop it. I no longer have any side 
effects from it.Who has stopped Gleevec, and what have you experienced as a 
result of doing so?Thanking you all for your input...Angie in Canada-- 
-- 
[CMLHope]
A support group of http://cmlhope.com
-
 
You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Stopping Gleevec

2015-06-17 Thread Marty Gartenberg
Hi Angie,

You are not thee only one that has stopped your TKI and felt that way.
sometimes something that we take as far as any TKI's ends up being a crutch
for us and we always seem to worry if this or that will come back to haunt
us. It is a normal human response and we worry about it.

Angie, since your really feeling better without the Gleevec then you should
learn to live your life in the best way that you can.

I have seen this many times before. A man that both Zavie and I knew was on
Alpha Interferon and suffered immensely from it's horrible side effects. He
suffered for many years and when he was finally PCRU everyone told him to
stop using it anymore but he still continued still suffering because it had
become a crutch for him. He had the same feelings as you now have and after
a lot of coaching from everyone he finally stopped it.

He has been off of it for many years and no reoccurrence of CML ever came
back to him. His system finally "burned out" his CML.

Remember that everything in life has a double edged soared. If you do
something will it come back to haunt you or if you don't do something will
it come back to haunt you??

I just can't live my life that way, and if something does come back then I
will deal with it.
Remember me telling everyone that Leukemia is both a disease of not only
the body but it also poisons the mind.

Angie, why not start writing a diary and put everything in there that you
have gone through the day? I do it and it lets me reflect about what I
could have done better or worse during the day. I call it my frustrations
and how to deal with them, and it really works for me as I am sure it will
also work for you or anyone else. By the way I see that Giora sent you his
response. read it if you haven't as yet.

Here is something called "expect the best" Please read it and it will also
help you with yourself.

One last thing. I am not a doctor but have gone through a lot of things in
my life health wise as you already know. Have you ever wondered why I am
still alive? I did at one time but maybe it is because I try helping others
as a promise that I once made to GOD and also received help myself from
others. It is a two way street, or I am the luckiest son of a bitch on this
planet ???
18's,

Marty



*EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.*

*WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.*

*EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...*

*FOCUS...*

 18's,

Marty

On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS  wrote:

> I just received an email from my oncologist telling me that it is safe for
> me to stop Gleevec for 3 months.
> I started Gleevec in January 2001, and reached cytogenic remission in July
> 2001.
> I've continued on 300mg per day.
> I was in the study for 12  years.
> I feel like it is my safety net between wellness and reoccurrence of CML.
> I am almost afraid to stop it. I no longer have any side effects from it.
> Who has stopped Gleevec, and what have you experienced as a result of
> doing so?
> Thanking you all for your input...
> Angie in Canada
>
> --
> --
> [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 CMLHope@googlegroups.com
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> cmlhope-unsubscr...@googlegroups.com
> For more options, visit this group at
> http://groups.google.com/group/CMLHope
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RE: [CMLHope] Stopping Gleevec

2015-06-17 Thread Giora Sharf
Dear Angie

I am living in a beautiful beach city named Netanya, 30 Kms north of Tel Aviv. 
We have few oldies on this list and it is always nice to hear how well we are 
doing. It is not easy for the new patients to understand that it wasn’t like 
this when we were diagnosed 15 years ago.

Here is to health and life

Giora

 

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
ANGELYN ESDERS
Sent: Wednesday, June 17, 2015 1:12 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Stopping Gleevec

 

Thank you for your kind letter, Giora. I remember you from years back. You live 
in Tel Aviv? I am so happy to hear that you are doing so well. I feel 
encouraged.

Angie
  

  _  

From: Giora Sharf 
To: cmlhope@googlegroups.com 
Sent: Wednesday, June 17, 2015 2:35 AM
Subject: RE: [CMLHope] Stopping Gleevec

 

Hi Angie

We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 
10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without 
treatment doing very well, monthly PCR are all in deep MR4.5 response.

I fully understand your concern, I had the same issues and didn’t agree to stop 
for couple of years. When I saw the data indicating that all the patients who 
stop and relapse (about 50-60 %) respond well when they restart treatment, I 
agreed to stop. I also didn’t have severe side effects on Glivec, but I am 
happy to be drug free and do very strict monthly or 6 weeks monitoring. Please 
remember if you decide to stop- the most important thing is a very strict 
monthly PCR on international scale. (IS)

Good luck whatever you decide

Giora

 

 

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
ANGELYN ESDERS
Sent: Wednesday, June 17, 2015 4:03 AM
To: cmlhope@googlegroups.com
Subject: [CMLHope] Stopping Gleevec

 

I just received an email from my oncologist telling me that it is safe for me 
to stop Gleevec for 3 months.

I started Gleevec in January 2001, and reached cytogenic remission in July 
2001. 

I've continued on 300mg per day.

I was in the study for 12  years.

I feel like it is my safety net between wellness and reoccurrence of CML.

I am almost afraid to stop it. I no longer have any side effects from it.

Who has stopped Gleevec, and what have you experienced as a result of doing so?

Thanking you all for your input...

Angie in Canada

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Re: [CMLHope] Stopping Gleevec

2015-06-17 Thread ANGELYN ESDERS
Thank you for your kind letter, Giora. I remember you from years back. You live 
in Tel Aviv? I am so happy to hear that you are doing so well. I feel 
encouraged.Angie
   From: Giora Sharf 
 To: cmlhope@googlegroups.com 
 Sent: Wednesday, June 17, 2015 2:35 AM
 Subject: RE: [CMLHope] Stopping Gleevec
   
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div.yiv1061552755WordSection1 {}#yiv1061552755 Hi AngieWe have similar story. I 
started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to 
my Dr's advise to stop. I am now 1 year without treatment doing very well, 
monthly PCR are all in deep MR4.5 response.I fully understand your concern, I 
had the same issues and didn’t agree to stop for couple of years. When I saw 
the data indicating that all the patients who stop and relapse (about 50-60 %) 
respond well when they restart treatment, I agreed to stop. I also didn’t have 
severe side effects on Glivec, but I am happy to be drug free and do very 
strict monthly or 6 weeks monitoring. Please remember if you decide to stop- 
the most important thing is a very strict monthly PCR on international scale. 
(IS)Good luck whatever you decideGiora  

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
ANGELYN ESDERS
Sent: Wednesday, June 17, 2015 4:03 AM
To: cmlhope@googlegroups.com
Subject: [CMLHope] Stopping Gleevec  I just received an email from my 
oncologist telling me that it is safe for me to stop Gleevec for 3 months.I 
started Gleevec in January 2001, and reached cytogenic remission in July 2001. 
I've continued on 300mg per day.I was in the study for 12  years.I feel like it 
is my safety net between wellness and reoccurrence of CML.I am almost afraid to 
stop it. I no longer have any side effects from it.Who has stopped Gleevec, and 
what have you experienced as a result of doing so?Thanking you all for your 
input...Angie in Canada-- 
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