Re: [CMLHope] Re: Back on Gleevec uplifting us all

[ICANDOALLTTC]

Hi Marty and good to hear from you.  Yes, I have a great  family support 
group, and I am so happy about that.  I always say if the  day dawns for you 
wake up and smell there roses.
I never had any spousal support a my hubby died a few years  before I got 
sick, but I know a lot of you do, and that is so  great!
Thanks for the uplift,
Blessings
Jeanie<3
 
 
In a message dated 9/1/2013 3:27:59 P.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
 
 
 
 
 
Hi again Jeanie,


Oh I think that some of them know. Take  for-in-stance my wife Rachelle. 
She saw first hand what I was going through  before, when I didn't even look 
sick, during, when I looked like hell, and  after, when I still looked like 
hell at what was going on by my bone marrow  transplant. 


So, don't cut some of your family or friends short.  Yes you may be correct 
about some members of your family and you may also be  correct about most 
that you call friends because some may not be so  understanding as some of 
your close family members. It all depends on the  person.


I'm sure that you already know which family members and  friends are more 
understanding about what you are now going through, and which  are not.


You are your own best about knowing what your going  through...


18's


Marty

 
 
 
 
 
 












On Sun, Sep 1, 2013 at 10:14 AM, <_ICANDOALLTTC@aol.com_ 
(mailto:icandoall...@aol.com) > wrote:


Hi Marty and you are so right.  This disease has opened our eyes  to the 
love of others and that is really what counts.  Our own families  don't really 
understand what we are going through because we don't look that  sick, but 
his group knows exactly what is happening to us.
Thanks for all the uplifting to all.
Jeanie<3
 
 
In a message dated 8/30/2013 8:56:26 P.M. Eastern Daylight Time, 
_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com)  writes:

 
 
 
Jeanie, Millie, just look at what  this disease has done for all  of us. We 
are like a family and all of our love for each other is what  really 
counts. 


I believe that everything happens for a  reason. Perhaps this is our  
reason.


18's


Marty

 
 
 









On Fri, Aug 30, 2013 at 4:37 PM, <_ICANDOALLTTC@aol.com_ 
(mailto:icandoall...@aol.com) > wrote:


Just a note to say I love all of you.  Blessings
Jeanie<3
 
 
In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time,  
_houtz@ptd.net_ (mailto:ho...@ptd.net)  writes:

Hi  Marty
 
Right back to you...I'm sending you hugs for the  day and know that we all 
need love and hugs18's to you, my  friendMillie

- Original Message - 
From: _Marty Gartenberg_ (mailto:wa2...@gmail.com)  
To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  
Sent: Wednesday, August 21,  2013 6:46 AM
Subject: Re: [CMLHope] Re: Back  on Gleevec


Hi Millie,  


I'm reading over some of the previous posts on here.


You know what? I love you!


18's


Marty



On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  <_houtz@ptd.net_ 
(mailto:ho...@ptd.net) > wrote:


Hi SkipI try hard to be strong, but, as  you know, it isn't always an 
easy thing to do.  I'm so glad  that you have fought this CML for all of the 
years you have.   It gives everyone hope that they'll be able to do the same 
 thing.  I'm sure you've been on all of the drugs as I have,  but at one 
point the doctor said he could put me back on the  Interferon if it ever came 
to that.   Have they done  that with  you?  Just wondering.   

I wish you many more years of being with  your grandson.  I know how I love 
my little  ones.   I have them ranging from 33 to 4 so I always have little 
ones in  my life.  Most are grown now, but my youngest bring me lots  of 
joy when I get to see them.  They are living in New Jersey  and it is a trip 
that I can no longer make easily, plus their  house is just not set up for 
me, so it's difficult for me to spend  the night and to do the trip in one day 
is to hard.  I am  hoping to try it one more time this summer, so we shall 
see.   I think about it anyway. Children are the joy in our lives and  
grandchildren even better as we can give them back. :>)  I  gave my 8 year old 
a 
quilt when he was here a couple of months ago  and he had tears in his eyes. 
 My son, Rick, says that he  doesn't let it out of his site.  I had made 
him a small one  when he was born, but the other 2 got larger ones and now he 
has  his.  I tried to talk him into giving up the baby quilt, so  we shall 
see.  It might go to college with  him.
 
You take care, Skip.  You and Marty are  great inspirations to me and 
others.  I always keep you in my  prayers as I think it helps.can't hurt, 
right?   
Many hugs and 18's to you and  yours,
Millie

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

You  received this message 

Re: [CMLHope] Re: Back on Gleevec uplifting us all

[ICANDOALLTTC]

Hi Millie and thanks for the uplift.  Yes we have to keep on fighting  and 
you are truly a great warrior!
More later-
Jeanie<3
 
 
In a message dated 9/1/2013 8:29:09 P.M. Eastern Daylight Time,  
ho...@ptd.net writes:

I agree  with you as when I started with CML 15 years ago, it was the same 
for  me.  I felt like other people were leaving every time I went to see my  
Oncologist and I was the only one at that particular clinic that had CML at 
 that time.  I asked him if there were any support groups, and he told me  
"No", so I struggled by myself until my son found this site on Google and 
put  me on it.  It truly was the best thing that he could have done for  me.  
We really do support one another and that's a good thing.  No,  I was never 
offered Myleran.  I never even heard of it and was nothing  that my doctor 
mentioned at the time.  I'm glad it worked for you for  that length of time.
 
I know  that the angels do watch over me as I'm still here and not planning 
on going  anywhere soon.  I have been fighting a lot of pain, and that gets 
me  down, but very little they're going to do about that.  I don't want any 
 more pain meds that go through the liver as I'm trying to delay the 
progress  of what's going on with that.  I really do limit what I take for 
pain,  
and have cut out other drugs that could hurt me more.  The drug for  
cholesterol can cause liver disease too, so I quit taking that.  I was  also on 
a 
patch for pain, that can cause liver problems, so I don't use those  either.  
I am trying to beat this thing, and perhaps I will.  We all  have to fight 
to win over this CML.  Some fight harder then others as  they have such side 
effects from this medicine that we have to take.  I  am back on a half dose 
and in a week or so will have my blood work done for my  Oncologist and 
he'll let me know what's happening.  He's been in touch  with the company that 
makes it, and their doctor recommended 1/2 dose for now  and see where that 
goes.
 
You take  care, my friend, and stay in touch.  I'm sending blessings, hugs, 
love,  and angels your way too.  We can never have enough  help.
Millie

- Original Message - 
From:  _Skip  Duffie_ (mailto:skipd_2...@yahoo.com)  
To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  
Sent: Sunday, September 01, 2013 5:14  PM
Subject: Re: [CMLHope] Re: Back on  Gleevec uplifting us all



Hi Millie;
It is nice to have this group, everyone care deeply about each  other.  
Back in the day, It seemed I was all alone, none of these  groups, most people 
did not even have a computer.
The only indication of how thing were going, is how small the  group in the 
cancer centre was getting.  Seems like I was the only  one who has tried 
Myleran it was great for
about 27 years, I often wonder why no one else has tried  it.  Maybe Marty 
might have, he had a bone marrow? You suffered a lot,  but drugs are getting 
better, you have great 
courage, so combine that combo, you have Millie.  My  platelet count was 6 
hgb was 87 wbc 2.0, my ANC was to low to count, yet I  feel great and still 
have a good quality of life.  
Keep on doing what your doing and GOD willing you will have a long and  
productive life.  Thanks for the nice wishes and I return them to you  with and 
angelto watch over you


 
 

From: "icandoall...@aol.com"  
To: cmlhope@googlegroups.com  
Sent: Sunday, September  1, 2013 11:14:16 AM
Subject: Re: [CMLHope] Re: Back on  Gleevec uplifting us all



 
Hi Marty and you are so right.  This disease has opened our eyes  to the 
love of others and that is really what counts.  Our own  families don't really 
understand what we are going through because we  don't look that sick, but 
his group knows exactly what is happening to  us.
Thanks for all the uplifting to all.
Jeanie<3
 
 
In a message dated 8/30/2013 8:56:26 P.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
 
 
Jeanie, Millie, just look at what  this disease has done for  all of us. We 
are like a family and all of our love for each other is  what really 
counts. 


I believe that everything happens for  a reason. Perhaps this is our  
reason.


18's


Marty

 
 
 









On Fri, Aug 30, 2013 at 4:37 PM,  <_ICANDOALLTTC@aol.com_ 
(mailto:icandoall...@aol.com) >  wrote:


Just a note to say I love all of you.  Blessings
Jeanie<3
 
 
In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time,  
_houtz@ptd.net_ (mailto:ho...@ptd.net)   writes:

Hi  Marty
 
Right  back to you...I'm sending you hugs for the day and know that we all  
need love and hugs18's to you, my  friendMillie

-  Original Message - 
From:  _Marty  Gartenberg_ (mailto:wa2...@gmail.com)  
To:  _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)   
Sent:  Wednesday, August 21, 2013 6:46 AM
Subject:  Re: [CMLHope] Re: Back on Gleevec


Hi Millie,  

Re: [CMLHope] Re: Back on Gleevec uplifting us all

[C.M. Houtz]

I agree with you as when I started with CML 15 years ago, it was the same for 
me.  I felt like other people were leaving every time I went to see my 
Oncologist and I was the only one at that particular clinic that had CML at 
that time.  I asked him if there were any support groups, and he told me "No", 
so I struggled by myself until my son found this site on Google and put me on 
it.  It truly was the best thing that he could have done for me.  We really do 
support one another and that's a good thing.  No, I was never offered Myleran.  
I never even heard of it and was nothing that my doctor mentioned at the time.  
I'm glad it worked for you for that length of time.

I know that the angels do watch over me as I'm still here and not planning on 
going anywhere soon.  I have been fighting a lot of pain, and that gets me 
down, but very little they're going to do about that.  I don't want any more 
pain meds that go through the liver as I'm trying to delay the progress of 
what's going on with that.  I really do limit what I take for pain, and have 
cut out other drugs that could hurt me more.  The drug for cholesterol can 
cause liver disease too, so I quit taking that.  I was also on a patch for 
pain, that can cause liver problems, so I don't use those either.  I am trying 
to beat this thing, and perhaps I will.  We all have to fight to win over this 
CML.  Some fight harder then others as they have such side effects from this 
medicine that we have to take.  I am back on a half dose and in a week or so 
will have my blood work done for my Oncologist and he'll let me know what's 
happening.  He's been in touch with the company that makes it, and their doctor 
recommended 1/2 dose for now and see where that goes.

You take care, my friend, and stay in touch.  I'm sending blessings, hugs, 
love, and angels your way too.  We can never have enough help.
Millie
  - Original Message - 
  From: Skip Duffie 
  To: cmlhope@googlegroups.com 
  Sent: Sunday, September 01, 2013 5:14 PM
  Subject: Re: [CMLHope] Re: Back on Gleevec uplifting us all


  Hi Millie;
  It is nice to have this group, everyone care deeply about each other.  Back 
in the day, It seemed I was all alone, none of these groups, most people did 
not even have a computer.
  The only indication of how thing were going, is how small the group in the 
cancer centre was getting.  Seems like I was the only one who has tried Myleran 
it was great for
  about 27 years, I often wonder why no one else has tried it.  Maybe Marty 
might have, he had a bone marrow? You suffered a lot, but drugs are getting 
better, you have great 
  courage, so combine that combo, you have Millie.  My platelet count was 6 hgb 
was 87 wbc 2.0, my ANC was to low to count, yet I feel great and still have a 
good quality of life.  
  Keep on doing what your doing and GOD willing you will have a long and 
productive life.  Thanks for the nice wishes and I return them to you with and 
angelto watch over you

From: "icandoall...@aol.com" 
To: cmlhope@googlegroups.com 
    Sent: Sunday, September 1, 2013 11:14:16 AM
Subject: Re: [CMLHope] Re: Back on Gleevec uplifting us all



Hi Marty and you are so right.  This disease has opened our eyes to the 
love of others and that is really what counts.  Our own families don't really 
understand what we are going through because we don't look that sick, but his 
group knows exactly what is happening to us.
Thanks for all the uplifting to all.
Jeanie<3

In a message dated 8/30/2013 8:56:26 P.M. Eastern Daylight Time, 
wa2...@gmail.com writes:
  Jeanie, Millie, just look at what  this disease has done for all of us. 
We are like a family and all of our love for each other is what really counts. 


  I believe that everything happens for a reason. Perhaps this is our 
reason.


  18's


  Marty




  On Fri, Aug 30, 2013 at 4:37 PM,  wrote:

 Just a note to say I love all of you. Blessings
Jeanie<3

In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time, 
ho...@ptd.net writes:
  Hi Marty

  Right back to you...I'm sending you hugs for the day and know that we 
all need love and hugs18's to you, my friendMillie
- Original Message - 
From: Marty Gartenberg 
    To: cmlhope@googlegroups.com 
Sent: Wednesday, August 21, 2013 6:46 AM
Subject: Re: [CMLHope] Re: Back on Gleevec


Hi Millie, 


I'm reading over some of the previous posts on here.


You know what? I love you!


18's


Marty



On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:

  Hi SkipI try hard to be strong, but, as you know, it isn't 
always an easy thing to do.  I'm so glad that you

Re: [CMLHope] Re: Back on Gleevec uplifting us all

[Skip Duffie]

Hi Millie;
It is nice to have this group, everyone care deeply about each other.  Back in 
the day, It seemed I was all alone, none of these groups, most people did not 
even have a computer.
The only indication of how thing were going, is how small the group in the 
cancer centre was getting.  Seems like I was the only one who has tried Myleran 
it was great for
about 27 years, I often wonder why no one else has tried it.  Maybe Marty might 
have, he had a bone marrow? You suffered a lot, but drugs are getting better, 
you have great 
courage, so combine that combo, you have Millie.  My platelet count was 6 hgb 
was 87 wbc 2.0, my ANC was to low to count, yet I feel great and still have a 
good quality of life.  
Keep on doing what your doing and GOD willing you will have a long and 
productive life.  Thanks for the nice wishes and I return them to you with and 
angelto watch over you


>
> From: "icandoall...@aol.com" 
>To: cmlhope@googlegroups.com 
>Sent: Sunday, September 1, 2013 11:14:16 AM
>Subject: Re: [CMLHope] Re: Back on Gleevec uplifting us all
>  
>
>
>Hi Marty and you are so right.  This disease has opened our eyes to 
the love of others and that is really what counts.  Our own families don't 
really understand what we are going through because we don't look that sick, 
but 
his group knows exactly what is happening to us. 
>Thanks for all the uplifting to all. 
>Jeanie<3 
>
>In a message dated 8/30/2013 8:56:26 P.M. Eastern Daylight Time, 
wa2...@gmail.com writes: 
>Jeanie, Millie, just look at what  this disease has done for all of  us. We 
>are like a family and all of our love for each other is what really  counts. 
>>
>>I believe that everything happens for a reason. Perhaps  this is our reason.
>>
>>18's
>>
>>Marty
>>  
>>
>>
>>
>>On Fri, Aug 30, 2013 at 4:37 PM,  wrote:
>>
>> 
>>> Just a note to say I love all of you.  Blessings 
>>>Jeanie<3 
>>>
>>>In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time, 
>>>ho...@ptd.net writes: 
>>>Hi  Marty 
>>>>  
>>>>Right  back to you...I'm sending you hugs for the day and know that we all 
>>>>need  love and hugs18's to you, my  friendMillie 
>>>>- Original Message -  
>>>>>From: Marty Gartenberg  
>>>>>To: cmlhope@googlegroups.com  
>>>>>Sent: Wednesday, August 21, 2013  6:46 AM 
>>>>>Subject: Re: [CMLHope] Re: Back on  Gleevec 
>>>>>
>>>>> 
>>>>>Hi Millie, 
>>>>>
>>>>> 
>>>>>I'm reading over some of the previous posts on here. 
>>>>>
>>>>> 
>>>>>You know what? I love you! 
>>>>>
>>>>> 
>>>>>18's 
>>>>>
>>>>> 
>>>>>Marty 
>>>>>
>>>>>
>>>>>
>>>>>On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:
>>>>>
>>>>> 
>>>>>>Hi  SkipI try hard to be strong, but, as you know, it isn't always an 
>>>>>> easy thing to do.  I'm so glad that you have fought this CML for  all of 
>>>>>>the years you have.  It gives everyone hope that they'll  be able to do 
>>>>>>the same thing.  I'm sure you've been on all of the  drugs as I have, but 
>>>>>>at one point the doctor said he could put me back  on the Interferon if 
>>>>>>it ever came to that.   Have they done  that with  you?  Just wondering.  
>>>>>> 
>>>>>>  
>>>>>>I  wish you many more years of being with your grandson.  I know how  I 
>>>>>>love my little  ones.  I have them ranging from 33 to 4 so  I always have 
>>>>>>little ones in my life.  Most are grown now, but my  youngest bring me 
>>>>>>lots of joy when I get to see them.  They are  living in New Jersey and 
>>>>>>it is a trip that I can no longer make  easily, plus their house is just 
>>>>>>not set up for me, so it's difficult  for me to spend the night and to do 
>>>>>>the trip in one day is to  hard.  I am hoping to try it one more time 
>>>>>>this summer, so we  shall see.  I think about it anyway. Children are the 
>>>>>>joy in our  lives and grandchildren even better as we can give them back. 
>>>>>> :>)  I gave my 8 year old a quilt when he was here a couple of  months 
>>>&g

Re: [CMLHope] Re: Back on Gleevec uplifting us all

[Marty Gartenberg]

Hi again Jeanie,

Oh I think that some of them know. Take for-in-stance my wife Rachelle. She
saw first hand what I was going through before, when I didn't even look
sick, during, when I looked like hell, and after, when I still looked like
hell at what was going on by my bone marrow transplant.

So, don't cut some of your family or friends short. Yes you may be correct
about some members of your family and you may also be correct about most
that you call friends because some may not be so understanding as some of
your close family members. It all depends on the person.

I'm sure that you already know which family members and friends are more
understanding about what you are now going through, and which are not.

You are your own best about knowing what your going through...

18's

Marty


On Sun, Sep 1, 2013 at 10:14 AM,  wrote:

> **
> Hi Marty and you are so right.  This disease has opened our eyes to the
> love of others and that is really what counts.  Our own families don't
> really understand what we are going through because we don't look that
> sick, but his group knows exactly what is happening to us.
> Thanks for all the uplifting to all.
> Jeanie<3
>
>  In a message dated 8/30/2013 8:56:26 P.M. Eastern Daylight Time,
> wa2...@gmail.com writes:
>
>   Jeanie, Millie, just look at what  this disease has done for all of us.
> We are like a family and all of our love for each other is what really
> counts.
>
> I believe that everything happens for a reason. Perhaps this is our reason.
>
> 18's
>
> Marty
>
>
> On Fri, Aug 30, 2013 at 4:37 PM,  wrote:
>
>> **
>>  Just a note to say I love all of you. Blessings
>> Jeanie<3
>>
>>  In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time,
>> ho...@ptd.net writes:
>>
>> *Hi Marty*
>> **
>> *Right back to you...I'm sending you hugs for the day and know that we
>> all need love and hugs18's to you, my friend....Millie*
>>
>> - Original Message -
>> *From:* Marty Gartenberg 
>> *To:* cmlhope@googlegroups.com
>> *Sent:* Wednesday, August 21, 2013 6:46 AM
>> *Subject:* Re: [CMLHope] Re: Back on Gleevec
>>
>> Hi Millie,
>>
>> I'm reading over some of the previous posts on here.
>>
>> You know what? I love you!
>>
>> 18's
>>
>> Marty
>>
>>
>> On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:
>>
>>> **
>>> *Hi SkipI try hard to be strong, but, as you know, it isn't always
>>> an easy thing to do.  I'm so glad that you have fought this CML for all of
>>> the years you have.  It gives everyone hope that they'll be able to do the
>>> same thing.  I'm sure you've been on all of the drugs as I have, but at one
>>> point the doctor said he could put me back on the Interferon if it ever
>>> came to that.   Have they done that with  you?  Just wondering.  *
>>> **
>>> *I wish you many more years of being with your grandson.  I know how I
>>> love my little  ones.  I have them ranging from 33 to 4 so I always have
>>> little ones in my life.  Most are grown now, but my youngest bring me lots
>>> of joy when I get to see them.  They are living in New Jersey and it is a
>>> trip that I can no longer make easily, plus their house is just not set up
>>> for me, so it's difficult for me to spend the night and to do the trip in
>>> one day is to hard.  I am hoping to try it one more time this summer, so we
>>> shall see.  I think about it anyway. Children are the joy in our lives and
>>> grandchildren even better as we can give them back. :>)  I gave my 8 year
>>> old a quilt when he was here a couple of months ago and he had tears in his
>>> eyes.  My son, Rick, says that he doesn't let it out of his site.  I had
>>> made him a small one when he was born, but the other 2 got larger ones and
>>> now he has his.  I tried to talk him into giving up the baby quilt, so we
>>> shall see.  It might go to college with him.*
>>> **
>>> *You take care, Skip.  You and Marty are great inspirations to me and
>>> others.  I always keep you in my prayers as I think it helps.can't
>>> hurt, right?  *
>>> *Many hugs and 18's to you and yours,*
>>> *Millie*
>>>
>>> --
>>> --
>>> [CMLHope]
>>> A support group of http://cmlhope.com
>>> -
>>>
>>> You received this message because you are subscribed to the Google
>>> Groups "CM

Re: [CMLHope] Re: Back on Gleevec uplifting us all

[ICANDOALLTTC]

Hi Marty and you are so right.  This disease has opened our eyes to  the 
love of others and that is really what counts.  Our own families don't  really 
understand what we are going through because we don't look that sick, but  
his group knows exactly what is happening to us.
Thanks for all the uplifting to all.
Jeanie<3
 
 
In a message dated 8/30/2013 8:56:26 P.M. Eastern Daylight Time,  
wa2...@gmail.com writes:

 
 
 
Jeanie, Millie, just look at what  this disease has done for all of  us. We 
are like a family and all of our love for each other is what really  
counts. 


I believe that everything happens for a reason. Perhaps  this is our reason.


18's


Marty

 
 
 









On Fri, Aug 30, 2013 at 4:37 PM, <_ICANDOALLTTC@aol.com_ 
(mailto:icandoall...@aol.com) > wrote:


Just a note to say I love all of you.  Blessings
Jeanie<3
 
 
In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time, 
_houtz@ptd.net_ (mailto:ho...@ptd.net)  writes:

Hi  Marty
 
Right  back to you...I'm sending you hugs for the day and know that we all 
need  love and hugs18's to you, my  friendMillie

- Original Message - 
From: _Marty Gartenberg_ (mailto:wa2...@gmail.com)  
To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  
Sent: Wednesday, August 21, 2013  6:46 AM
Subject: Re: [CMLHope] Re: Back on  Gleevec


Hi Millie,  


I'm reading over some of the previous posts on here.


You know what? I love you!


18's


Marty



On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz <_houtz@ptd.net_ 
(mailto:ho...@ptd.net) > wrote:


Hi  SkipI try hard to be strong, but, as you know, it isn't always an  
easy thing to do.  I'm so glad that you have fought this CML for  all of the 
years you have.  It gives everyone hope that they'll  be able to do the 
same thing.  I'm sure you've been on all of the  drugs as I have, but at one 
point the doctor said he could put me back  on the Interferon if it ever came 
to that.   Have they done  that with  you?  Just wondering.   

I  wish you many more years of being with your grandson.  I know how  I 
love my little  ones.  I have them ranging from 33 to 4 so  I always have 
little ones in my life.  Most are grown now, but my  youngest bring me lots of 
joy when I get to see them.  They are  living in New Jersey and it is a trip 
that I can no longer make  easily, plus their house is just not set up for 
me, so it's difficult  for me to spend the night and to do the trip in one day 
is to  hard.  I am hoping to try it one more time this summer, so we  shall 
see.  I think about it anyway. Children are the joy in our  lives and 
grandchildren even better as we can give them back.  :>)  I gave my 8 year old 
a 
quilt when he was here a couple of  months ago and he had tears in his eyes. 
 My son, Rick, says that  he doesn't let it out of his site.  I had made 
him a small one  when he was born, but the other 2 got larger ones and now he 
has  his.  I tried to talk him into giving up the baby quilt, so we  shall 
see.  It might go to college with  him.
 
You  take care, Skip.  You and Marty are great inspirations to me and  
others.  I always keep you in my prayers as I think it  helps.can't hurt, 
right?  
Many  hugs and 18's to you and yours,
Millie

 
 
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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

I do believe what you are saying with all of my heart.  You are like family to 
me and when I don't see your posts for a few days, I get worried.  It just may 
be the reason that we're all here together, sharing our struggles and joys.  I 
love the mountains too, but as I said, miss the ocean.  If we could bring it to 
PA. it might be a perfect world.  Yes, the winters are hard and I didn't grow 
up with the snow, so can't even walk in it, and hate to drive in it.  Oh well, 
nothing is perfect.
I'm so glad that you're in my lifeStay well
Hugs, and 18's
Millie
  - Original Message - 
  From: Marty Gartenberg 
  To: cmlhope@googlegroups.com 
  Sent: Friday, August 30, 2013 8:56 PM
  Subject: Re: [CMLHope] Re: Back on Gleevec


  Jeanie, Millie, just look at what  this disease has done for all of us. We 
are like a family and all of our love for each other is what really counts. 


  I believe that everything happens for a reason. Perhaps this is our reason.


  18's


  Marty




  On Fri, Aug 30, 2013 at 4:37 PM,  wrote:

 Just a note to say I love all of you. Blessings
Jeanie<3

In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time, 
ho...@ptd.net writes:
  Hi Marty

  Right back to you...I'm sending you hugs for the day and know that we all 
need love and hugs18's to you, my friendMillie
- Original Message - 
From: Marty Gartenberg 
To: cmlhope@googlegroups.com 
Sent: Wednesday, August 21, 2013 6:46 AM
Subject: Re: [CMLHope] Re: Back on Gleevec


Hi Millie, 


I'm reading over some of the previous posts on here.


You know what? I love you!


18's


Marty



On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:

  Hi SkipI try hard to be strong, but, as you know, it isn't always 
an easy thing to do.  I'm so glad that you have fought this CML for all of the 
years you have.  It gives everyone hope that they'll be able to do the same 
thing.  I'm sure you've been on all of the drugs as I have, but at one point 
the doctor said he could put me back on the Interferon if it ever came to that. 
  Have they done that with  you?  Just wondering.  

  I wish you many more years of being with your grandson.  I know how I 
love my little  ones.  I have them ranging from 33 to 4 so I always have little 
ones in my life.  Most are grown now, but my youngest bring me lots of joy when 
I get to see them.  They are living in New Jersey and it is a trip that I can 
no longer make easily, plus their house is just not set up for me, so it's 
difficult for me to spend the night and to do the trip in one day is to hard.  
I am hoping to try it one more time this summer, so we shall see.  I think 
about it anyway. Children are the joy in our lives and grandchildren even 
better as we can give them back. :>)  I gave my 8 year old a quilt when he was 
here a couple of months ago and he had tears in his eyes.  My son, Rick, says 
that he doesn't let it out of his site.  I had made him a small one when he was 
born, but the other 2 got larger ones and now he has his.  I tried to talk him 
into giving up the baby quilt, so we shall see.  It might go to college with 
him.

  You take care, Skip.  You and Marty are great inspirations to me and 
others.  I always keep you in my prayers as I think it helps.can't hurt, 
right?  
  Many hugs and 18's to you and yours,
  Millie

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Re: [CMLHope] Re: Back on Gleevec

[Marty Gartenberg]

Jeanie, Millie, just look at what  this disease has done for all of us. We
are like a family and all of our love for each other is what really counts.

I believe that everything happens for a reason. Perhaps this is our reason.

18's

Marty


On Fri, Aug 30, 2013 at 4:37 PM,  wrote:

> **
>  Just a note to say I love all of you. Blessings
> Jeanie<3
>
>  In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time,
> ho...@ptd.net writes:
>
> *Hi Marty*
> **
> *Right back to you...I'm sending you hugs for the day and know that we
> all need love and hugs18's to you, my friendMillie*
>
> - Original Message -
> *From:* Marty Gartenberg 
> *To:* cmlhope@googlegroups.com
> *Sent:* Wednesday, August 21, 2013 6:46 AM
> *Subject:* Re: [CMLHope] Re: Back on Gleevec
>
> Hi Millie,
>
> I'm reading over some of the previous posts on here.
>
> You know what? I love you!
>
> 18's
>
> Marty
>
>
> On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:
>
>> **
>> *Hi SkipI try hard to be strong, but, as you know, it isn't always
>> an easy thing to do.  I'm so glad that you have fought this CML for all of
>> the years you have.  It gives everyone hope that they'll be able to do the
>> same thing.  I'm sure you've been on all of the drugs as I have, but at one
>> point the doctor said he could put me back on the Interferon if it ever
>> came to that.   Have they done that with  you?  Just wondering.  *
>> **
>> *I wish you many more years of being with your grandson.  I know how I
>> love my little  ones.  I have them ranging from 33 to 4 so I always have
>> little ones in my life.  Most are grown now, but my youngest bring me lots
>> of joy when I get to see them.  They are living in New Jersey and it is a
>> trip that I can no longer make easily, plus their house is just not set up
>> for me, so it's difficult for me to spend the night and to do the trip in
>> one day is to hard.  I am hoping to try it one more time this summer, so we
>> shall see.  I think about it anyway. Children are the joy in our lives and
>> grandchildren even better as we can give them back. :>)  I gave my 8 year
>> old a quilt when he was here a couple of months ago and he had tears in his
>> eyes.  My son, Rick, says that he doesn't let it out of his site.  I had
>> made him a small one when he was born, but the other 2 got larger ones and
>> now he has his.  I tried to talk him into giving up the baby quilt, so we
>> shall see.  It might go to college with him.*
>> **
>> *You take care, Skip.  You and Marty are great inspirations to me and
>> others.  I always keep you in my prayers as I think it helps.can't
>> hurt, right?  *
>> *Many hugs and 18's to you and yours,*
>> *Millie*
>>
>> --
>> --
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>> A support group of http://cmlhope.com
>> -
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>>
>>
>>
>
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Re: [CMLHope] Re: Back on Gleevec

[ICANDOALLTTC]

Just  a note to say I love all of you. Blessings
Jeanie<3
 
 
In a message dated 8/21/2013 12:00:46 P.M. Eastern Daylight Time,  
ho...@ptd.net writes:

Hi  Marty
 
Right back  to you...I'm sending you hugs for the day and know that we all 
need love and  hugs18's to you, my friendMillie

- Original Message - 
From:  _Marty  Gartenberg_ (mailto:wa2...@gmail.com)  
To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  
Sent: Wednesday, August 21, 2013 6:46  AM
Subject: Re: [CMLHope] Re: Back on  Gleevec


Hi Millie,  


I'm reading over some of the previous posts on here.


You know what? I love you!


18's


Marty



On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz <_houtz@ptd.net_ 
(mailto:ho...@ptd.net) > wrote:


Hi  SkipI try hard to be strong, but, as you know, it isn't always an 
easy  thing to do.  I'm so glad that you have fought this CML for all of  the 
years you have.  It gives everyone hope that they'll be able to  do the 
same thing.  I'm sure you've been on all of the drugs as I  have, but at one 
point the doctor said he could put me back on the  Interferon if it ever came 
to that.   Have they done that  with  you?  Just wondering.  
 
I wish  you many more years of being with your grandson.  I know how I love 
 my little  ones.  I have them ranging from 33 to 4 so I always  have 
little ones in my life.  Most are grown now, but my youngest  bring me lots of 
joy when I get to see them.  They are living in New  Jersey and it is a trip 
that I can no longer make easily, plus their house  is just not set up for 
me, so it's difficult for me to spend the night and  to do the trip in one day 
is to hard.  I am hoping to try it one more  time this summer, so we shall 
see.  I think about it anyway. Children  are the joy in our lives and 
grandchildren even better as we can give them  back. :>)  I gave my 8 year old 
a 
quilt when he was here a couple  of months ago and he had tears in his eyes.  
My son, Rick, says that  he doesn't let it out of his site.  I had made him 
a small one when  he was born, but the other 2 got larger ones and now he 
has his.  I  tried to talk him into giving up the baby quilt, so we shall 
see.  It  might go to college with him.
 
You take  care, Skip.  You and Marty are great inspirations to me and  
others.  I always keep you in my prayers as I think it  helps.can't hurt, 
right?  
Many  hugs and 18's to you and yours,
Millie

 
 
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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Hi Marty

Right back to you...I'm sending you hugs for the day and know that we all need 
love and hugs18's to you, my friendMillie
  - Original Message - 
  From: Marty Gartenberg 
  To: cmlhope@googlegroups.com 
  Sent: Wednesday, August 21, 2013 6:46 AM
  Subject: Re: [CMLHope] Re: Back on Gleevec


  Hi Millie,


  I'm reading over some of the previous posts on here.


  You know what? I love you!


  18's


  Marty



  On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:

Hi SkipI try hard to be strong, but, as you know, it isn't always an 
easy thing to do.  I'm so glad that you have fought this CML for all of the 
years you have.  It gives everyone hope that they'll be able to do the same 
thing.  I'm sure you've been on all of the drugs as I have, but at one point 
the doctor said he could put me back on the Interferon if it ever came to that. 
  Have they done that with  you?  Just wondering.  

I wish you many more years of being with your grandson.  I know how I love 
my little  ones.  I have them ranging from 33 to 4 so I always have little ones 
in my life.  Most are grown now, but my youngest bring me lots of joy when I 
get to see them.  They are living in New Jersey and it is a trip that I can no 
longer make easily, plus their house is just not set up for me, so it's 
difficult for me to spend the night and to do the trip in one day is to hard.  
I am hoping to try it one more time this summer, so we shall see.  I think 
about it anyway. Children are the joy in our lives and grandchildren even 
better as we can give them back. :>)  I gave my 8 year old a quilt when he was 
here a couple of months ago and he had tears in his eyes.  My son, Rick, says 
that he doesn't let it out of his site.  I had made him a small one when he was 
born, but the other 2 got larger ones and now he has his.  I tried to talk him 
into giving up the baby quilt, so we shall see.  It might go to college with 
him.

You take care, Skip.  You and Marty are great inspirations to me and 
others.  I always keep you in my prayers as I think it helps.can't hurt, 
right?  
Many hugs and 18's to you and yours,
Millie

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Re: [CMLHope] Re: Back on Gleevec

[Marty Gartenberg]

Hi Millie,

I'm reading over some of the previous posts on here.

You know what? I love you!

18's

Marty


On Sun, Aug 4, 2013 at 7:10 PM, C.M. Houtz  wrote:

> **
> *Hi SkipI try hard to be strong, but, as you know, it isn't always an
> easy thing to do.  I'm so glad that you have fought this CML for all of the
> years you have.  It gives everyone hope that they'll be able to do the same
> thing.  I'm sure you've been on all of the drugs as I have, but at one
> point the doctor said he could put me back on the Interferon if it ever
> came to that.   Have they done that with  you?  Just wondering.  *
> **
> *I wish you many more years of being with your grandson.  I know how I
> love my little  ones.  I have them ranging from 33 to 4 so I always have
> little ones in my life.  Most are grown now, but my youngest bring me lots
> of joy when I get to see them.  They are living in New Jersey and it is a
> trip that I can no longer make easily, plus their house is just not set up
> for me, so it's difficult for me to spend the night and to do the trip in
> one day is to hard.  I am hoping to try it one more time this summer, so we
> shall see.  I think about it anyway. Children are the joy in our lives and
> grandchildren even better as we can give them back. :>)  I gave my 8 year
> old a quilt when he was here a couple of months ago and he had tears in his
> eyes.  My son, Rick, says that he doesn't let it out of his site.  I had
> made him a small one when he was born, but the other 2 got larger ones and
> now he has his.  I tried to talk him into giving up the baby quilt, so we
> shall see.  It might go to college with him.*
> **
> *You take care, Skip.  You and Marty are great inspirations to me and
> others.  I always keep you in my prayers as I think it helps.can't
> hurt, right?  *
> *Many hugs and 18's to you and yours,*
> *Millie*
>
> --
> --
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Re: [CMLHope] Re: Back on Gleevec

[Skip Duffie]

>
>
>  Hi Millie;
>great to hear from you again.  I know your strong by the tone of  your email, 
>but remember some days are diamonds and some are coal, so if you feel like 
>venting well bless  your pea picking little heart,  just do that.  Some days 
>my wife has to keep me in a cage and feed me raw meat with a slingshot.  Most 
>days though, I am pretty content with my lot in life.  All these years I have 
>one motto "pick my self off the floor and give it another go"  My prayer for 
>us all,  peace, long life, and love in our hearts.  
>There is a line from a book, called the little prince.  It is only with the 
>heart one sees rightly, what is essential is invisible to the eye"  I truly 
>believe that, I look at the past see how it was, I now see the future and see 
>how it will be.
>Bless you all.
>SkipD
>
> 
>Hi SkipI 
try hard to be strong, but, as you know, it isn't always an easy thing to 
do.  I'm so glad that you have fought this CML for all of the years you 
have.  It gives everyone hope that they'll be able to do the same 
thing.  I'm sure you've been on all of the drugs as I have, but at one 
point the doctor said he could put me back on the Interferon if it ever came to 
that.   Have they done that with  you?  Just 
wondering.   
>  
>I wish you 
many more years of being with your grandson.  I know how I love my 
little  ones.  I have them ranging from 33 to 4 so I always have 
little ones in my life.  Most are grown now, but my youngest bring me lots 
of joy when I get to see them.  They are living in New Jersey and it is a 
trip that I can no longer make easily, plus their house is just not set up for 
me, so it's difficult for me to spend the night and to do the trip in one day 
is 
to hard.  I am hoping to try it one more time this summer, so we shall 
see.  I think about it anyway. Children are the joy in our lives and 
grandchildren even better as we can give them back. :>)  I gave my 8 
year old a quilt when he was here a couple of months ago and he had tears in 
his 
eyes.  My son, Rick, says that he doesn't let it out of his site.  I 
had made him a small one when he was born, but the other 2 got larger ones and 
now he has his.  I tried to talk him into giving up the baby quilt, so we 
shall see.  It might go to college with him. 
>  
>You take care, 
Skip.  You and Marty are great inspirations to me and others.  I 
always keep you in my prayers as I think it helps.can't hurt, right?   
>Many hugs and 
18's to you and yours, 
>Millie
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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Hi SkipI try hard to be strong, but, as you know, it isn't always an easy 
thing to do.  I'm so glad that you have fought this CML for all of the years 
you have.  It gives everyone hope that they'll be able to do the same thing.  
I'm sure you've been on all of the drugs as I have, but at one point the doctor 
said he could put me back on the Interferon if it ever came to that.   Have 
they done that with  you?  Just wondering.  

I wish you many more years of being with your grandson.  I know how I love my 
little  ones.  I have them ranging from 33 to 4 so I always have little ones in 
my life.  Most are grown now, but my youngest bring me lots of joy when I get 
to see them.  They are living in New Jersey and it is a trip that I can no 
longer make easily, plus their house is just not set up for me, so it's 
difficult for me to spend the night and to do the trip in one day is to hard.  
I am hoping to try it one more time this summer, so we shall see.  I think 
about it anyway. Children are the joy in our lives and grandchildren even 
better as we can give them back. :>)  I gave my 8 year old a quilt when he was 
here a couple of months ago and he had tears in his eyes.  My son, Rick, says 
that he doesn't let it out of his site.  I had made him a small one when he was 
born, but the other 2 got larger ones and now he has his.  I tried to talk him 
into giving up the baby quilt, so we shall see.  It might go to college with 
him.

You take care, Skip.  You and Marty are great inspirations to me and others.  I 
always keep you in my prayers as I think it helps.can't hurt, right?  
Many hugs and 18's to you and yours,
Millie

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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Hi Marty,
Thanks for all of the kind words.  It really does help a lot.  I wanted to ask 
you if you'd do something for me.  I never did get the photo you sent out.  I 
believe it was of you and your wife, etc.   I couldn't bring it in, but since 
then my computer guy has worked on this, so perhaps I could get it now.  If you 
find the time, please forward it to me.  Many hugs and lots of 18's, Millie

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Re: [CMLHope] Re: Back on Gleevec what causes high CPKs

[ICANDOALLTTC]

What abnormal results mean
High CPK levels may be seen in patients who  have:
 
Brain injury or stroke
Convulsions
Delirium  tremens
Dermatomyositis or polymyositis
Electric shock
Heart  attack
Inflammation of the heart muscle (myocarditis)
Lung tissue death  (pulmonary infarction)
Muscular dystrophies
Myopathy
Additional  conditions may give positive test results:
 
Hypothyroidism
Hyperthyroidism
Pericarditis following a heart  attack
Rhabdomyolysis

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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Thanks Marty for all of your kind words and for your wisdom.  I had read that 
story before, but it was well worth reading again.I try to look for the 
good in all people.  Hugs & 18's  Millie

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Re: [CMLHope] Re: Back on Gleevec

[Marty Gartenberg]

Dear everyone, I want you to read this. We may all have our faults but we
are all here for a reason. I always say that there is a reason for
everything but you must first open your eyes to be able to see these
reasons.

The Water Bearer 

[image: 00081]A water bearer in China had two large pots, each hung on the
ends of a pole which he carried across his neck. One of the pots had a
crack in it, while the other pot was perfect and always delivered a full
portion of water. At the end of the long walk from the stream to the House,
the cracked pot arrived only half full. For a full two years this went on
daily, with the bearer delivering only one and a half pots full of water to
his house. Of course, the perfect pot was proud of its accomplishments,
perfect for which it was made. But the poor cracked pot was ashamed of it’s
own imperfection. And miserable that it was able to accomplish only half of
what it had been made to do.

After two years of what it perceived to be a bitter failure, it spoke to
the water bearer one day by the stream. “I am ashamed of myself, and I want
to apologize to you. I have been able to deliver only half my load because
this crack in my side causes water to leak out all the way back to your
house. Because of my flaws, you have to do all of this work, and you don’t
get full value from your efforts,” the pot said.

The bearer said to the pot, “Did you notice that there were flowers only on
your side of the path, but not on the other pot’s side? That’s because I
have always known about your flaw. So I planted flower seeds on your side
of the path, and every day while we walk back, you've watered them. For two
years I have been able to pick these beautiful flowers to decorate the
table. Without you being just the way you are, there would not be this
beauty to grace the house?

*Moral:* Each of us has our own unique flaws. We’re all cracked pots. But
it’s the cracks and flaws we each have that make our lives together so very
interesting and rewarding. You've just got to take each person for what
they are, and look for the good in them.

Blessed are the flexible, for they shall not be bent out of shape.
Remember to appreciate all the different people in your life.

18's

Marty


On Sat, Aug 3, 2013 at 1:35 AM, C.M. Houtz  wrote:

> **
> *Hi BethYou sound a lot like me.  I do find strength in sharing with
> others and if I can help someone, that's the best medicine in the world for
> me.  I've always been that way.  My kids always think I do to much for
> others, but I do it for me as it has always helped me through life.  Oh...I
> do it for them too, but, hopefully, it helps everyone.  I just love people
> and feel their pain too.  This group has become so important to me and I
> think that we're a great group that help one another through some very
> rough times.  I'm sure that you miss you Mother a lot.  32 years after
> loosing my one and only daughter, I still feel the pain and miss her so
> much.  She was my best friend and we shared so many thingslikes and
> dislikes.  She was only 20 and  had so much to live for. *
> **
> * Tomorrow will be a better day for you.  That's the way I look at life.
> I take one day at a time and most of the time that works out for me.  To
> bad we don't all live closer so we could get together.  I imagine that we
> could talk for hours and have a great time.  Thanks for always being there
> for me.  I do appreciate it and hope that we can continue to help one
> another when needed.  The days I don't get any e-mails from the group, I
> really miss them.  They always lift my spirits and give me the strength to
> just do the best I can.  By the way, supper was great.  My son made the
> burgers on our indoor grill and the rest was simple, but good.  We always
> sit down together for our  meals and that's a good thing.  Families today
> don't do that often enough.  *
> **
> *Let me know how you're doing and know that I'm always here to listen.*
> *Many hugs, blessings, and 18's,*
> *Millie*
>
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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Hi BethYou sound a lot like me.  I do find strength in sharing with others 
and if I can help someone, that's the best medicine in the world for me.  I've 
always been that way.  My kids always think I do to much for others, but I do 
it for me as it has always helped me through life.  Oh...I do it for them too, 
but, hopefully, it helps everyone.  I just love people and feel their pain too. 
 This group has become so important to me and I think that we're a great group 
that help one another through some very rough times.  I'm sure that you miss 
you Mother a lot.  32 years after loosing my one and only daughter, I still 
feel the pain and miss her so much.  She was my best friend and we shared so 
many thingslikes and dislikes.  She was only 20 and  had so much to live 
for. 

 Tomorrow will be a better day for you.  That's the way I look at life.  I take 
one day at a time and most of the time that works out for me.  To bad we don't 
all live closer so we could get together.  I imagine that we could talk for 
hours and have a great time.  Thanks for always being there for me.  I do 
appreciate it and hope that we can continue to help one another when needed.  
The days I don't get any e-mails from the group, I really miss them.  They 
always lift my spirits and give me the strength to just do the best I can.  By 
the way, supper was great.  My son made the burgers on our indoor grill and the 
rest was simple, but good.  We always sit down together for our  meals and 
that's a good thing.  Families today don't do that often enough.  

Let me know how you're doing and know that I'm always here to listen.
Many hugs, blessings, and 18's,
Millie

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Re: [CMLHope] Re: Back on Gleevec

[bkbarney]

Thanks MIllie
I'm a trouper... I appreciate your kindness and writing. Today was the 2nd 
anniversary of my mom's death and I think the whole week was hard as my body 
and heart remember companioning her...I  miss her so... My cpk is up higher 
than it's ever been and so I am trying to get to the bottom of why? and what 
action to takelike so manyof us, it's a slow process to uncover what's 
really going on, but I feel confident that some way, some how, I can and will 
get through this pain by staying positive, hopeful and taking action where I 
cangiving to others, in meaningful ways, brings meaning to my life. I thank 
you and Marty and Skip and other long term thrivers here who take the time to 
share. It's more important than I have words for. It just is., You keep taking 
good care of yoruself, stay positive, enjoy the little things that make you 
smile ..like a really good deal on thread, or the taste of summer fresh corn on 
the cobbshared with those you love..simple
Love, 
Beth


From: C.M. Houtz 
To: cmlhope 
Sent: Fri, Aug 2, 2013 1:57 pm
Subject: Re: [CMLHope] Re: Back on Gleevec




Hi Beth,  Sorry that you're having a bad day.  Hope that the walk will help.  I 
sure wish I could get out and walk, so feel lucky that you can do that.  I was 
just working on supper.  I am having burgers, corn, cut off the cob and sautéed 
in butter, and a tomato and cucumber salad that  I love.  It's what it is, and 
I love to get it done early.  Actually, I got on here because JoAnn Fabrics was 
having a sale on some thread that I use and shipping was next to nothing, so 
I'm happy that I got such a good deal.  That always makes me smile
 
We all have tough days.  I'm sure that I'll have many in the future, and hope 
that you all will be there for me.  I'm there for anyone that needs to vent, or 
just talk.  We have issues with taking these meds, yet they are our salvation 
too.  It's a rough call sometimes.  I'm in pain today, so am taking my meds for 
that and hoping to control it...which I am so far.  It isn't a CML thing, but 
my Polymyalgia and some days are worse then others.  Lately, it seems like it's 
more of the worse.  It will go away for days, but always manages to come back.  
I also had a call from the place where I send for my prescriptions and they 
can't get my one medication and don't know when they'll be able to, so want the 
doctor to prescribe something else and that means possibly having a different 
reaction to a new medication.  I've decided to put off calling my Cardiologist 
until Monday as I just don't feel like dealing with it today.  I guess that 
sounds stupid, but it is what it is.  It's one of my heart medications and I 
have over a months supply left, so no big deal.
 
You take care, my friend, and let me know if there's anything I can do to help 
you.  I wish I could come up with the answers that we're all searching for and, 
Marty is right, Someday they'll find the answer to this awful CML and other 
cancers and people won't have to deal with it any more.  I'm sure that 
something else will crop up to take it's place though.  We are lucky to be 
living in a time when they look for solutions.  
 
Many hugs (I believe they help) and lots of 18's too.
Millie

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Re: [CMLHope] Re: Back on Gleevec

[Marty Gartenberg]

Millie,

I know that i'm right, they will come up with something.
i'm sorry that you have to deal with all of that pain. You must be such a
strong person and I admire you for that.

Many more 18's dear Millie,

Marty


On Fri, Aug 2, 2013 at 3:56 PM, C.M. Houtz  wrote:

> **
> *Hi Beth,  Sorry that you're having a bad day.  Hope that the walk will
> help.  I sure wish I could get out and walk, so feel lucky that you can do
> that.  I was just working on supper.  I am having burgers, corn, cut off
> the cob and sautéed in butter, and a tomato and cucumber salad that  I
> love.  It's what it is, and I love to get it done early.  Actually, I got
> on here because JoAnn Fabrics was having a sale on some thread that I use
> and shipping was next to nothing, so I'm happy that I got such a good
> deal.  That always makes me smile*
> **
> *We all have tough days.  I'm sure that I'll have many in the future, and
> hope that you all will be there for me.  I'm there for anyone that needs to
> vent, or just talk.  We have issues with taking these meds, yet they are
> our salvation too.  It's a rough call sometimes.  I'm in pain today, so am
> taking my meds for that and hoping to control it...which I am so far.  It
> isn't a CML thing, but my Polymyalgia and some days are worse then others.
> Lately, it seems like it's more of the worse.  It will go away for days,
> but always manages to come back.  I also had a call from the place where I
> send for my prescriptions and they can't get my one medication and don't
> know when they'll be able to, so want the doctor to prescribe something
> else and that means possibly having a different reaction to a new
> medication.  I've decided to put off calling my Cardiologist until Monday
> as I just don't feel like dealing with it today.  I guess that sounds
> stupid, but it is what it is.  It's one of my heart medications and I have
> over a months supply left, so no big deal.*
> **
> *You take care, my friend, and let me know if there's anything I can do
> to help you.  I wish I could come up with the answers that we're all
> searching for and, Marty is right, Someday they'll find the answer to this
> awful CML and other cancers and people won't have to deal with it any
> more.  I'm sure that something else will crop up to take it's place
> though.  We are lucky to be living in a time when they look for solutions.
> *
> **
> *Many hugs (I believe they help) and lots of 18's too.*
> *Millie*
>
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Re: [CMLHope] Re: Back on Gleevec

[Skip Duffie]

>
>
>  Millie 
>Your attitude is so impressive, your a wonder and a survivor 
> as most of you know I have survived CML for 36 years
>and still enjoy my life.  I truly believe attitude has so much to do with ones 
>overall health.
>I have been off all drugs for almost 3 years now, I know the docs have nothing 
>left for 
>them to try on me, but on the other hand my life is good.  I read most of the 
>posts, and I
>wish all of us in this battle for life, good health, long life and less aches 
>and pains.  The 
>drug companies have tons of drugs they are working on, maybe there will be 
>cure next week,
>next month or next year.  All we patients have to do is wait.  I still hold 
>hope in my heart.
>I do not let CML rule my life, I do not mind going to the hospital for blood 
>and Apheresis Platelets
>twice weekly.  I am thankful for every day I spend with my 3 year old 
>grandson.  When Marty 
>signs off he wishes you 18's.   In Nova Scotia there is a saying like 18's so 
>I will wish you 
>all from Nova Scotia (Alba Nudah) Slainte Mhath . alba nudah means new 
>Scotland  and 
>Slàinte mhath means Good Health,  
> 
>Skipd 36 year survivor
>1977 to 2013
>
> 
> 
>Hi 
SylviaYes, some of us are luckier then others.  I never did well when 
they pulled me off of the Gleevec for long, but then it never put me into 
remission and stopped working for me altogether.  I am on Tasigna for years 
now, and got pulled off due to my liver problem.  I'm hoping that I'm still 
in remission, but don't know, and don't know how they're going to handle things 
if I'm not.  Anyway I look at it, I'm in trouble, but am not giving 
up 
>I just pray 
that there are answers, but so far my doctors are still looking for one.  I 
see my Oncologist at the end of the month and I will know more 
then. 
>You hang in 
there and know that we're always here to share and 
listen. 
>Millie
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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Hi SylviaYes, some of us are luckier then others.  I never did well when 
they pulled me off of the Gleevec for long, but then it never put me into 
remission and stopped working for me altogether.  I am on Tasigna for years 
now, and got pulled off due to my liver problem.  I'm hoping that I'm still in 
remission, but don't know, and don't know how they're going to handle things if 
I'm not.  Anyway I look at it, I'm in trouble, but am not giving up
I just pray that there are answers, but so far my doctors are still looking for 
one.  I see my Oncologist at the end of the month and I will know more then.
You hang in there and know that we're always here to share and listen.
Millie

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Re: [CMLHope] Re: Back on Gleevec

[C.M. Houtz]

Hi Beth,  Sorry that you're having a bad day.  Hope that the walk will help.  I 
sure wish I could get out and walk, so feel lucky that you can do that.  I was 
just working on supper.  I am having burgers, corn, cut off the cob and sautéed 
in butter, and a tomato and cucumber salad that  I love.  It's what it is, and 
I love to get it done early.  Actually, I got on here because JoAnn Fabrics was 
having a sale on some thread that I use and shipping was next to nothing, so 
I'm happy that I got such a good deal.  That always makes me smile

We all have tough days.  I'm sure that I'll have many in the future, and hope 
that you all will be there for me.  I'm there for anyone that needs to vent, or 
just talk.  We have issues with taking these meds, yet they are our salvation 
too.  It's a rough call sometimes.  I'm in pain today, so am taking my meds for 
that and hoping to control it...which I am so far.  It isn't a CML thing, but 
my Polymyalgia and some days are worse then others.  Lately, it seems like it's 
more of the worse.  It will go away for days, but always manages to come back.  
I also had a call from the place where I send for my prescriptions and they 
can't get my one medication and don't know when they'll be able to, so want the 
doctor to prescribe something else and that means possibly having a different 
reaction to a new medication.  I've decided to put off calling my Cardiologist 
until Monday as I just don't feel like dealing with it today.  I guess that 
sounds stupid, but it is what it is.  It's one of my heart medications and I 
have over a months supply left, so no big deal.

You take care, my friend, and let me know if there's anything I can do to help 
you.  I wish I could come up with the answers that we're all searching for and, 
Marty is right, Someday they'll find the answer to this awful CML and other 
cancers and people won't have to deal with it any more.  I'm sure that 
something else will crop up to take it's place though.  We are lucky to be 
living in a time when they look for solutions.  

Many hugs (I believe they help) and lots of 18's too.
Millie

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Re: [CMLHope] Re: Back on Gleevec

[bkbarney]

Marty,
Thanks for your words of encouragement to all of us...I needed them today. The 
fighter in me can sometimes get tired...holding perspective of how much better 
I am than many is useful. I know it doesn't negate what Peter said, it feels 
bad when we go off and it comes right backroaring in a very short time 
span...but as you say, it's individual...it's
 just our lot...so I am counting my blessings...I know it could be lots 
worsejust not feeling great today...hopefully in a few hours I will feel 
better.going to take a walk.lving in gratitude for my two feet and 
ability to walk!!! Thanks. B



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Aug 2, 2013 10:24 am
Subject: Re: [CMLHope] Re: Back on Gleevec


Hi Peter,


Don'r become discouraged. We all have different bodies and what may work for 
one may not work for another. Everyone acts differently from different drugs. 
Who knows why but the fact is you you are still alive and basically doing well.


I just wish any of these TKI's would have been around when I had CML. This was 
way back in 1989 and I had nothing available to me but a bone marrow 
transplant.  


Peter, you know that old saying "I was sad because I had no shoes until I met a 
man with no feet"


Anyway, it is in my heart that there will be something that will come up to 
cure or prevent CML in the near future. It will be like the Salk Vaccine that 
prevents Polio. 


18's (Symbol for life)


Marty




On Fri, Aug 2, 2013 at 7:50 AM, Peter  wrote:

Those vacations can backfire. A few months ago, I was in really bad shape, 
undoubtedly caused by Tasigna.
I did not take Tasigna for ten days and then resumed the regular dose.
The next blood test, about two months later, showed that my log reduction had 
decreased from 3.4 to 2.5. Ouch!!!
The two tests three and six months after that, showed a 3.0 log reduction, 
which is where I am now.
Needless to say, I have been taking my meds religiously ever since.
There must be some secret which has not been unlocked yet. 
Why can some people get away with not taking any TKIs for years, while others 
are instantly punished after skipping a few doses?


On Thursday, August 1, 2013 9:04:09 PM UTC-4, Sylvia wrote:
Hi everyone 
I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take a 
break and go off for a while.  My dr wasn't too pleased and said i needed to 
come back in a month for a PCR.  Well my results went from a 4.5 log reduction 
to a 2.8 log reduction.  That's a lot in 1 month.  So I am back on Gleevec.  
It's like welcoming back an old friend.  I am thankful for Gleevec as many of 
my CML friends didn't live long enough to try it. 
Blessings to all 
Sylvia Guenther 
Dx 6/98

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Re: [CMLHope] Re: Back on Gleevec

[bkbarney]

Thank you Pat! I have found that when I am off sprycel the numbers right 
themselves. so I think it's caused by the drug. There had been some question as 
to if the sprycel had created a situation where another disease process could 
have been evoked by it's use. I have had extensive tests AMA panel etc...they 
cannot seem to find the culprit. Thank you again for your help Pat and all you 
do for all of us. Best, Beth



-Original Message-
From: Pat Elliott 
To: cmlhope 
Sent: Fri, Aug 2, 2013 10:29 am
Subject: RE: [CMLHope] Re: Back on Gleevec



Hi Beth- I’m not sure what you’re asking, but there’s clinical trial data 
showing elevated CPK levels are a rare side effect found with Gleevec.
Clinical Laboratory Tests: Estimated 0.1%-1%: blood CPK increased //Source: 
http://www.drugs.com/pro/gleevec.html
I didn’t find data indicating this as a side effect with Sprycel but Gleevec 
has been studied in trials longer and there’s typically more data available 
there.
You may find it helpful to research information for other conditions that cause 
an elevated CPK level and, of course, to work with your medical team too. 
This link provides some basic info on CPK levels and also lists other 
conditions: http://www.nlm.nih.gov/medlineplus/ency/article/003503.htm
Hope this helps you get some answers soon! Take care. 
Pat
 
 

 
 
 
From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf Of 
bkbar...@aol.com
Sent: Thursday, August 01, 2013 10:58 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Re: Back on Gleevec
 

Dear Sylvia,

 

I am sorry your break did not hold your numbers. I am however, grateful that 
you respond to gleevec and that " your old friend" is, with side effects and 
all, still a very powerful allie. You have a great attitude about it. Just so 
you don't feel alone, I went off sprycel for 7 weeks, and lost my MMR during 
that time. I was dissapointed, but relieved that when I went back on, the med 
worked quickly to get me back in line. Now it's just trying to navigate the 
side effects...Still trying to find a way to bring down my CPKI am 
researching this as much as I am able...anyone who has any ideas about it, 
please let me know!!! Pat? Any suggestions?? Take care Sylvia, we are all here 
to chat with...so we are walking the path together. Warm thoughts and good care 
to all.Take good care, Beth



-Original Message-
From: Richard H 
To: cmlhope 
Sent: Thu, Aug 1, 2013 9:29 pm
Subject: [CMLHope] Re: Back on Gleevec

Sorry to hear that the vacation didn't work.   

 

Richard H.

On Thursday, August 1, 2013 8:04:09 PM UTC-5, Sylvia wrote: 
Hi everyone 
I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take a 
break and go off for a while.  My dr wasn't too pleased and said i needed to 
come back in a month for a PCR.  Well my results went from a 4.5 log reduction 
to a 2.8 log reduction.  That's a lot in 1 month.  So I am back on Gleevec.  
It's like welcoming back an old friend.  I am thankful for Gleevec as many of 
my CML friends didn't live long enough to try it. 
Blessings to all 
Sylvia Guenther 
Dx 6/98

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RE: [CMLHope] Re: Back on Gleevec

[Pat Elliott]

Hi Beth- I'm not sure what you're asking, but there's clinical trial data
showing elevated CPK levels are a rare side effect found with Gleevec.

Clinical Laboratory Tests: Estimated 0.1%-1%: blood CPK increased //Source:
http://www.drugs.com/pro/gleevec.html

I didn't find data indicating this as a side effect with Sprycel but Gleevec
has been studied in trials longer and there's typically more data available
there.

You may find it helpful to research information for other conditions that
cause an elevated CPK level and, of course, to work with your medical team
too. 

This link provides some basic info on CPK levels and also lists other
conditions: http://www.nlm.nih.gov/medlineplus/ency/article/003503.htm

Hope this helps you get some answers soon! Take care. 

Pat

 

 

 

 

 

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf
Of bkbar...@aol.com
Sent: Thursday, August 01, 2013 10:58 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Re: Back on Gleevec

 

Dear Sylvia,

 

I am sorry your break did not hold your numbers. I am however, grateful that
you respond to gleevec and that " your old friend" is, with side effects and
all, still a very powerful allie. You have a great attitude about it. Just
so you don't feel alone, I went off sprycel for 7 weeks, and lost my MMR
during that time. I was dissapointed, but relieved that when I went back on,
the med worked quickly to get me back in line. Now it's just trying to
navigate the side effects...Still trying to find a way to bring down my
CPKI am researching this as much as I am able...anyone who has any ideas
about it, please let me know!!! Pat? Any suggestions?? Take care Sylvia, we
are all here to chat with...so we are walking the path together. Warm
thoughts and good care to all.Take good care, Beth



-Original Message-
From: Richard H 
To: cmlhope 
Sent: Thu, Aug 1, 2013 9:29 pm
Subject: [CMLHope] Re: Back on Gleevec

Sorry to hear that the vacation didn't work.   

 

Richard H.

On Thursday, August 1, 2013 8:04:09 PM UTC-5, Sylvia wrote: 

Hi everyone 
I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take
a break and go off for a while.  My dr wasn't too pleased and said i needed
to come back in a month for a PCR.  Well my results went from a 4.5 log
reduction to a 2.8 log reduction.  That's a lot in 1 month.  So I am back on
Gleevec.  It's like welcoming back an old friend.  I am thankful for Gleevec
as many of my CML friends didn't live long enough to try it. 
Blessings to all 
Sylvia Guenther 
Dx 6/98

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Re: [CMLHope] Re: Back on Gleevec

[Marty Gartenberg]

Hi Peter,

Don'r become discouraged. We all have different bodies and what may work
for one may not work for another. Everyone acts differently from different
drugs. Who knows why but the fact is you you are still alive and basically
doing well.

I just wish any of these TKI's would have been around when I had CML. This
was way back in 1989 and I had nothing available to me but a bone marrow
transplant.

Peter, you know that old saying "I was sad because I had no shoes until I
met a man with no feet"

Anyway, it is in my heart that there will be something that will come up to
cure or prevent CML in the near future. It will be like the Salk Vaccine
that prevents Polio.

18's (Symbol for life)

Marty


On Fri, Aug 2, 2013 at 7:50 AM, Peter  wrote:

> Those vacations can backfire. A few months ago, I was in really bad shape,
> undoubtedly caused by Tasigna.
> I did not take Tasigna for ten days and then resumed the regular dose.
> The next blood test, about two months later, showed that my log reduction
> had decreased from 3.4 to 2.5. Ouch!!!
> The two tests three and six months after that, showed a 3.0 log reduction,
> which is where I am now.
> Needless to say, I have been taking my meds religiously ever since.
> There must be some secret which has not been unlocked yet.
> Why can some people get away with not taking any TKIs for years, while
> others are instantly punished after skipping a few doses?
>
>
> On Thursday, August 1, 2013 9:04:09 PM UTC-4, Sylvia wrote:
>>
>> Hi everyone
>> I wrote about 2 months ago that after 12 yrs on Gleevec I was going to
>> take a break and go off for a while.  My dr wasn't too pleased and said i
>> needed to come back in a month for a PCR.  Well my results went from a 4.5
>> log reduction to a 2.8 log reduction.  That's a lot in 1 month.  So I am
>> back on Gleevec.  It's like welcoming back an old friend.  I am thankful
>> for Gleevec as many of my CML friends didn't live long enough to try it.
>> Blessings to all
>> Sylvia Guenther
>> Dx 6/98
>
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[CMLHope] Re: Back on Gleevec

[Peter]

Those vacations can backfire. A few months ago, I was in really bad shape, 
undoubtedly caused by Tasigna.
I did not take Tasigna for ten days and then resumed the regular dose.
The next blood test, about two months later, showed that my log reduction 
had decreased from 3.4 to 2.5. Ouch!!!
The two tests three and six months after that, showed a 3.0 log reduction, 
which is where I am now.
Needless to say, I have been taking my meds religiously ever since.
There must be some secret which has not been unlocked yet. 
Why can some people get away with not taking any TKIs for years, while 
others are instantly punished after skipping a few doses?


On Thursday, August 1, 2013 9:04:09 PM UTC-4, Sylvia wrote:
>
> Hi everyone 
> I wrote about 2 months ago that after 12 yrs on Gleevec I was going to 
> take a break and go off for a while.  My dr wasn't too pleased and said i 
> needed to come back in a month for a PCR.  Well my results went from a 4.5 
> log reduction to a 2.8 log reduction.  That's a lot in 1 month.  So I am 
> back on Gleevec.  It's like welcoming back an old friend.  I am thankful 
> for Gleevec as many of my CML friends didn't live long enough to try it. 
> Blessings to all 
> Sylvia Guenther 
> Dx 6/98

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Re: [CMLHope] Re: Back on Gleevec

[Susan Zimmerman]

Sylvia,
So sorry your numbers didn't hold longer than they did.  After twelve years, 
you'd think they would.  Everybody is different!  Thank God for gleevec.  Best 
wishes to you and thanks for updating us all.  
18's,

Susan


-Original Message-
From: bkbarney 
To: cmlhope 
Sent: Fri, Aug 2, 2013 1:57 am
Subject: Re: [CMLHope] Re: Back on Gleevec


Dear Sylvia,
 
I am sorry your break did not hold your numbers. I am however, grateful that 
you respond to gleevec and that " your old friend" is, with side effects and 
all, still a very powerful allie. You have a great attitude about it. Just so 
you don't feel alone, I went off sprycel for 7 weeks, and lost my MMR during 
that time. I was dissapointed, but relieved that when I went back on, the med 
worked quickly to get me back in line. Now it's just trying to navigate the 
side effects...Still trying to find a way to bring down my CPKI am 
researching this as much as I am able...anyone who has any ideas about it, 
please let me know!!! Pat? Any suggestions?? Take care Sylvia, we are all here 
to chat with...so we are walking the path together. Warm thoughts and good care 
to all.Take good care, Beth



-Original Message-
From: Richard H 
To: cmlhope 
Sent: Thu, Aug 1, 2013 9:29 pm
Subject: [CMLHope] Re: Back on Gleevec


Sorry to hear that the vacation didn't work.  


Richard H.

On Thursday, August 1, 2013 8:04:09 PM UTC-5, Sylvia wrote:
Hi everyone 
I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take a 
break and go off for a while.  My dr wasn't too pleased and said i needed to 
come back in a month for a PCR.  Well my results went from a 4.5 log reduction 
to a 2.8 log reduction.  That's a lot in 1 month.  So I am back on Gleevec.  
It's like welcoming back an old friend.  I am thankful for Gleevec as many of 
my CML friends didn't live long enough to try it. 
Blessings to all 
Sylvia Guenther 
Dx 6/98

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Re: [CMLHope] Re: Back on Gleevec

[bkbarney]

Dear Sylvia,

I am sorry your break did not hold your numbers. I am however, grateful that 
you respond to gleevec and that " your old friend" is, with side effects and 
all, still a very powerful allie. You have a great attitude about it. Just so 
you don't feel alone, I went off sprycel for 7 weeks, and lost my MMR during 
that time. I was dissapointed, but relieved that when I went back on, the med 
worked quickly to get me back in line. Now it's just trying to navigate the 
side effects...Still trying to find a way to bring down my CPKI am 
researching this as much as I am able...anyone who has any ideas about it, 
please let me know!!! Pat? Any suggestions?? Take care Sylvia, we are all here 
to chat with...so we are walking the path together. Warm thoughts and good care 
to all.Take good care, Beth



-Original Message-
From: Richard H 
To: cmlhope 
Sent: Thu, Aug 1, 2013 9:29 pm
Subject: [CMLHope] Re: Back on Gleevec


Sorry to hear that the vacation didn't work.  


Richard H.

On Thursday, August 1, 2013 8:04:09 PM UTC-5, Sylvia wrote:
Hi everyone 
I wrote about 2 months ago that after 12 yrs on Gleevec I was going to take a 
break and go off for a while.  My dr wasn't too pleased and said i needed to 
come back in a month for a PCR.  Well my results went from a 4.5 log reduction 
to a 2.8 log reduction.  That's a lot in 1 month.  So I am back on Gleevec.  
It's like welcoming back an old friend.  I am thankful for Gleevec as many of 
my CML friends didn't live long enough to try it. 
Blessings to all 
Sylvia Guenther 
Dx 6/98

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[CMLHope] Re: Back on Gleevec

[Richard H]

Sorry to hear that the vacation didn't work.  

Richard H.

On Thursday, August 1, 2013 8:04:09 PM UTC-5, Sylvia wrote:
>
> Hi everyone 
> I wrote about 2 months ago that after 12 yrs on Gleevec I was going to 
> take a break and go off for a while.  My dr wasn't too pleased and said i 
> needed to come back in a month for a PCR.  Well my results went from a 4.5 
> log reduction to a 2.8 log reduction.  That's a lot in 1 month.  So I am 
> back on Gleevec.  It's like welcoming back an old friend.  I am thankful 
> for Gleevec as many of my CML friends didn't live long enough to try it. 
> Blessings to all 
> Sylvia Guenther 
> Dx 6/98

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