Re: [CMLHope]

2013-07-20 Thread Richard H
Yes the H is for my last name.  Richard Troxel was a member before I joined 
so have used added the inital to lessen the confusion when I post.  

Richard H.

On Saturday, July 20, 2013 3:55:37 PM UTC-5, millie wrote:
>
>  *Hi Richard,*
> ** 
> *I smile when I see you're messages come in.  Don't know if the H in your 
> name is last name or middle, but my husband is also Richard, and last name 
> Houtz, so the first time I saw one of your  messages, I wondered why he was 
> mailing me something.  We both have our own computers, and there are times 
> he sends me messages and vise versa.At any rate, I also have a son with 
> the same name.*
> ** 
> *I am also on a very restricted diet, and have trouble sticking to it.  I 
> have good days and bad ones.  When I have a bad one, I just put it behind 
> me and try to do better the next day as we can't change what we've already 
> done, and getting stressed out over it doesn't help either.  I have heart 
> issues and have a pace maker, so shouldn't have salt.   I try very hard not 
> to over use it, but do use it in my cooking and don't salt extra at the 
> table.  Yesterday, I ate potato chips though and pretzels, so my legs and 
> feet were swollen today.  You'd think I'd learn, but there are days when 
> you just don't care...or whatever it is.  I also am dealing with my liver 
> issues, and that causes my legs and feet to swell also, so am dealing with 
> two different things that are causing the same problem.  I'm also diabetic, 
> so I try to count my carbs and do pretty well doing that, but also have the 
> occasional piece of candy.  I'm taking a half dose of the medication they 
> give me for that, so I'm doing okay most days.  When you're struggling with 
> so many health issues, it's difficult and so there are days when you just 
> want to stop dealing, but I get passed that and am happy for the life that 
> I have...even with problems.  I wish I could exercise.  I do try to 
> exercise my arms, but lately  my polymyalgia prevents me from lifting my 
> arms.  Today is one of those days.  It mostly hits you in the arms, 
> shoulders, and neck.  I also have regular arthritis, so I'm a real mess!  
> I'm smiling and laughing now as it is a lot to deal with, so I just lump it 
> all together and do the very best I can to enjoy my life one day at a 
> time.  I don't want to spend my life being miserable, so it's the way I 
> deal with it.  The doctor that just did my liver biopsy, wanted me to tell 
> him what health issues I had and when I finished, he said"Is that 
> all?".  I told him that is he waited 5 minutes, I might come up with more.  
> I had him laughing...also the nurses and myself.  I felt no pain from the 
> liver biopsy, so that was a wonderful thing.  The nurse told me that most 
> people dealing with all of my health issues would be miserable...but I 
> choose not to be.  I think that we can choose to deal with our health 
> issues any way we want to, and I would rather be happy then miserable.  I'm 
> not saying that I don't have bad days.  I think that we all do.*
> ** 
> *You take care and keep us posted on what's going on with you.  You are 
> among friends hereHugs, Millie*
>

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Re: [CMLHope]

2013-07-20 Thread bkbarney
Millie, I can just picture you making your doctor's laugh..you are a 
wonder..it's the small things that matter...a little thing that makes us 
smile...like your message..means a lot...I feel like I get a shot in the arm 
every time I read one of your posts..stay positive, count your blessings, find 
the humorthe silver lining somewheremaybe have a pity party, but not 
for too long..then there's life to keep on living...chronic pain can change a 
person's disposition, so can an abundance of illnesses all stacked one on top 
of the other...but not youyou remind me of a rainbow. Beth



-Original Message-
From: C.M. Houtz 
To: cmlhope 
Sent: Sat, Jul 20, 2013 2:56 pm
Subject: Re: [CMLHope]



Hi Richard,
 
I smile when I see you're messages come in.  Don't know if the H in your name 
is last name or middle, but my husband is also Richard, and last name Houtz, so 
the first time I saw one of your  messages, I wondered why he was mailing me 
something.  We both have our own computers, and there are times he sends me 
messages and vise versa.At any rate, I also have a son with the same name.
 
I am also on a very restricted diet, and have trouble sticking to it.  I have 
good days and bad ones.  When I have a bad one, I just put it behind me and try 
to do better the next day as we can't change what we've already done, and 
getting stressed out over it doesn't help either.  I have heart issues and have 
a pace maker, so shouldn't have salt.   I try very hard not to over use it, but 
do use it in my cooking and don't salt extra at the table.  Yesterday, I ate 
potato chips though and pretzels, so my legs and feet were swollen today.  
You'd think I'd learn, but there are days when you just don't care...or 
whatever it is.  I also am dealing with my liver issues, and that causes my 
legs and feet to swell also, so am dealing with two different things that are 
causing the same problem.  I'm also diabetic, so I try to count my carbs and do 
pretty well doing that, but also have the occasional piece of candy.  I'm 
taking a half dose of the medication they give me for that, so I'm doing okay 
most days.  When you're struggling with so many health issues, it's difficult 
and so there are days when you just want to stop dealing, but I get passed that 
and am happy for the life that I have...even with problems.  I wish I could 
exercise.  I do try to exercise my arms, but lately  my polymyalgia prevents me 
from lifting my arms.  Today is one of those days.  It mostly hits you in the 
arms, shoulders, and neck.  I also have regular arthritis, so I'm a real mess!  
I'm smiling and laughing now as it is a lot to deal with, so I just lump it all 
together and do the very best I can to enjoy my life one day at a time.  I 
don't want to spend my life being miserable, so it's the way I deal with it.  
The doctor that just did my liver biopsy, wanted me to tell him what health 
issues I had and when I finished, he said"Is that all?".  I told him that 
is he waited 5 minutes, I might come up with more.  I had him laughing...also 
the nurses and myself.  I felt no pain from the liver biopsy, so that was a 
wonderful thing.  The nurse told me that most people dealing with all of my 
health issues would be miserable...but I choose not to be.  I think that we can 
choose to deal with our health issues any way we want to, and I would rather be 
happy then miserable.  I'm not saying that I don't have bad days.  I think that 
we all do.
 
You take care and keep us posted on what's going on with you.  You are among 
friends hereHugs, Millie

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Re: [CMLHope] Re: Hi..Susan's Life

2013-07-20 Thread ANGELYN ESDERS
AWESOME Susan! That was very interesting.
Keep on celebrating!

What lies behind us and what lies before us are tiny matters compared to what 
lies within us
Angie
 


 From: Susan Zimmerman 
To: cmlhope@googlegroups.com 
Sent: Saturday, July 20, 2013 6:14:10 PM
Subject: Re: [CMLHope] Re: Hi
  


Thanks and hats off to Marty and Millie.  I realize I am no different, believe 
me.  You guys haven't heard much about my life, and maybe I won't bore you with 
details today.  But I do stay busy now doing the things I love.  I just was 
slightly paralyzed about getting going to a specialist.  I knew I must do that, 
and have researched many around the country over the years.  A good kick in the 
butt by you blood brothers and sisters was exactly what I needed.   
 
I earned my theology degree at age 52 (year 2000), in Florida before we 
returned here to Indiana in 2010.  Before moving to Fla., I also have done a 
lot of counseling to lay people and training of leaders over the years in the 
Christian element.  Did a lot of public speaking for seventeen years within a 
parachurch organization.  Worked for eleven years at what I called a "social 
service agency" within a large church.  I coordinated all the volunteers to go 
to nursing homes, prisons, juvenile detention facilities, etc.  Planned 3 or 4 
trips a year to raise money for all this.  Also had a list of shut-ins that we 
ministered to regularly. Did visitation to the hospitals as well.  Still do 
that!  The best part was giving food to the poor through the church. I couldn't 
wait to go to work each day!  After that time period ended in my life I was 
still very active going on mission trips, conducting weekend marriage seminars, 
and marriage classes.  Had
 gone into selling advertising for Christian organizations to make my living 
after the church thing was done.  Now I do a lot of studying and hope to 
develop some teaching classes at our church, etc.  I coordinate the prayer team 
at our church as well, and send out prayer requests by e-mail for two 
organizations.  As I told Marcie, I love Israel and support them in any way I 
can.  Sometimes our house also becomes a hotel as our friends and family pop in 
and out.   
 
So that's what keeps me busy, and other family things as well.  To begin going 
back to doctors regularly again is beyond fun to think about, but the 
alternative is simply not acceptable.  I really do thank God every day for each 
day and love Celebrating My Life!!! 
 
Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was 
working on, but he only answered me about his recommendation of medication and 
two docs he recommended.  I guess I asked him too many questions for him to 
answer.totally understandable. 

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


-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Sat, Jul 20, 2013 4:38 pm
Subject: Re: [CMLHope] Re: Hi


Hi Susan,  
 
Sure you may have your problems but the important thing is that you have 
decided to try and do something about them. You are no different then anyone 
else. Sometimes we just go through so much that we are terribly frightened to 
do anything about them because anything that is of the unknown always seems to 
frighten us.  
 
I want to tell you that you, Millie, Richard, Greenie and all of the rest of 
those even on different CML sites that are suffering from CML would probably 
not be here right now if it weren't for the TKI's that are out there now.  
 
You will see, mark my words, that there will be something coming soon that will 
rid you and everyone else of this terrible disease just like when the Polio 
vaccine got rid of Polio. Just like Penicillin and all of the rest of the 
antibiotics help with curing infections. 
 
I think that we all should take an example from Millie. She may have some 
debilitating things going on but she still keeps herself busy with making her 
pillow cases and shams and the like. She says that it is nuts, but is it 
really? 
 
She further says that, and I quote her exact words: "I know it's nuts, but 
doing these things, keeps me going (like the energizer bunny) and takes my mind 
off of everything else."   
 
 
Enough said judge for yourself. Get doing things that you like, I guarantee 
that it will make you feel better.  
I always say that your mind is a very powerful tool, you just have to learn to 
use it in constructive ways.  
 
Now I'm not saying that it is going to cure you of any disease but you will 
feel better when your doing something that you enjoy. Isn't that what life is 
all about? 
 
Busy hands make happy minds. 
 
18's, 
 
Marty 
  



On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz  wrote:

 
>Hi 
Susan, 
>  
>I'm glad that 
you are going to get so

Re: [CMLHope] Re: Hi

2013-07-20 Thread Susan Zimmerman
Thanks and hats off to Marty and Millie.  I realize I am no different, believe 
me.  You guys haven't heard much about my life, and maybe I won't bore you with 
details today.  But I do stay busy now doing the things I love.  I just was 
slightly paralyzed about getting going to a specialist.  I knew I must do that, 
and have researched many around the country over the years.  A good kick in the 
butt by you blood brothers and sisters was exactly what I needed.  


I earned my theology degree at age 52 (year 2000), in Florida before we 
returned here to Indiana in 2010.  Before moving to Fla., I also have done a 
lot of counseling to lay people and training of leaders over the years in the 
Christian element.  Did a lot of public speaking for seventeen years within a 
parachurch organization.  Worked for eleven years at what I called a "social 
service agency" within a large church.  I coordinated all the volunteers to go 
to nursing homes, prisons, juvenile detention facilities, etc.  Planned 3 or 4 
trips a year to raise money for all this.  Also had a list of shut-ins that we 
ministered to regularly. Did visitation to the hospitals as well.  Still do 
that!  The best part was giving food to the poor through the church. I couldn't 
wait to go to work each day!  After that time period ended in my life I was 
still very active going on mission trips, conducting weekend marriage seminars, 
and marriage classes.  Had gone into selling advertising for Christian 
organizations to make my living after the church thing was done.  Now I do a 
lot of studying and hope to develop some teaching classes at our church, etc.  
I coordinate the prayer team at our church as well, and send out prayer 
requests by e-mail for two organizations.  As I told Marcie, I love Israel and 
support them in any way I can.  Sometimes our house also becomes a hotel as our 
friends and family pop in and out.  


So that's what keeps me busy, and other family things as well.  To begin going 
back to doctors regularly again is beyond fun to think about, but the 
alternative is simply not acceptable.  I really do thank God every day for each 
day and love Celebrating My Life!!!


Oh, by the way, I asked Dr. Pinilla through e-mail about the vaccine he was 
working on, but he only answered me about his recommendation of medication and 
two docs he recommended.  I guess I asked him too many questions for him to 
answer.totally understandable.

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



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Sat, Jul 20, 2013 4:38 pm
Subject: Re: [CMLHope] Re: Hi


Hi Susan, 


Sure you may have your problems but the important thing is that you have 
decided to try and do something about them. You are no different then anyone 
else. Sometimes we just go through so much that we are terribly frightened to 
do anything about them because anything that is of the unknown always seems to 
frighten us. 


I want to tell you that you, Millie, Richard, Greenie and all of the rest of 
those even on different CML sites that are suffering from CML would probably 
not be here right now if it weren't for the TKI's that are out there now. 


You will see, mark my words, that there will be something coming soon that will 
rid you and everyone else of this terrible disease just like when the Polio 
vaccine got rid of Polio. Just like Penicillin and all of the rest of the 
antibiotics help with curing infections.


I think that we all should take an example from Millie. She may have some 
debilitating things going on but she still keeps herself busy with making her 
pillow cases and shams and the like. She says that it is nuts, but is it really?


She further says that, and I quote her exact words: "I know it's nuts, but 
doing these things, keeps me going (like the energizer bunny) and takes my mind 
off of everything else."   



Enough said judge for yourself. Get doing things that you like, I guarantee 
that it will make you feel better. 
I always say that your mind is a very powerful tool, you just have to learn to 
use it in constructive ways. 


Now I'm not saying that it is going to cure you of any disease but you will 
feel better when your doing something that you enjoy. Isn't that what life is 
all about?


Busy hands make happy minds.


18's,


Marty






On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz  wrote:


Hi Susan,
 
I'm glad that you are going to get some help with your issues.  I know that 
once you deal with them, it will make your life so much easier.  I know that I 
feel that dealing with my liver problem is so much better then not knowing and 
worrying all of the time.  We all face a lot of things with this CML.  It's 
different, but the same because we all have to deal with what is.  If we had a 
choice,

Re: [CMLHope]

2013-07-20 Thread C.M. Houtz
Hi Richard,

I smile when I see you're messages come in.  Don't know if the H in your name 
is last name or middle, but my husband is also Richard, and last name Houtz, so 
the first time I saw one of your  messages, I wondered why he was mailing me 
something.  We both have our own computers, and there are times he sends me 
messages and vise versa.At any rate, I also have a son with the same name.

I am also on a very restricted diet, and have trouble sticking to it.  I have 
good days and bad ones.  When I have a bad one, I just put it behind me and try 
to do better the next day as we can't change what we've already done, and 
getting stressed out over it doesn't help either.  I have heart issues and have 
a pace maker, so shouldn't have salt.   I try very hard not to over use it, but 
do use it in my cooking and don't salt extra at the table.  Yesterday, I ate 
potato chips though and pretzels, so my legs and feet were swollen today.  
You'd think I'd learn, but there are days when you just don't care...or 
whatever it is.  I also am dealing with my liver issues, and that causes my 
legs and feet to swell also, so am dealing with two different things that are 
causing the same problem.  I'm also diabetic, so I try to count my carbs and do 
pretty well doing that, but also have the occasional piece of candy.  I'm 
taking a half dose of the medication they give me for that, so I'm doing okay 
most days.  When you're struggling with so many health issues, it's difficult 
and so there are days when you just want to stop dealing, but I get passed that 
and am happy for the life that I have...even with problems.  I wish I could 
exercise.  I do try to exercise my arms, but lately  my polymyalgia prevents me 
from lifting my arms.  Today is one of those days.  It mostly hits you in the 
arms, shoulders, and neck.  I also have regular arthritis, so I'm a real mess!  
I'm smiling and laughing now as it is a lot to deal with, so I just lump it all 
together and do the very best I can to enjoy my life one day at a time.  I 
don't want to spend my life being miserable, so it's the way I deal with it.  
The doctor that just did my liver biopsy, wanted me to tell him what health 
issues I had and when I finished, he said"Is that all?".  I told him that 
is he waited 5 minutes, I might come up with more.  I had him laughing...also 
the nurses and myself.  I felt no pain from the liver biopsy, so that was a 
wonderful thing.  The nurse told me that most people dealing with all of my 
health issues would be miserable...but I choose not to be.  I think that we can 
choose to deal with our health issues any way we want to, and I would rather be 
happy then miserable.  I'm not saying that I don't have bad days.  I think that 
we all do.

You take care and keep us posted on what's going on with you.  You are among 
friends hereHugs, Millie

-- 
-- 
[CMLHope]
A support group of http://cmlhope.com
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Re: [CMLHope] Re: Hi

2013-07-20 Thread Marty Gartenberg
Hi Susan,

Sure you may have your problems but the important thing is that you have
decided to try and do something about them. You are no different then
anyone else. Sometimes we just go through so much that we are terribly
frightened to do anything about them because anything that is of the
unknown always seems to frighten us.

I want to tell you that you, Millie, Richard, Greenie and all of the rest
of those even on different CML sites that are suffering from CML would
probably not be here right now if it weren't for the TKI's that are out
there now.

You will see, mark my words, that there will be something coming soon that
will rid you and everyone else of this terrible disease just like when the
Polio vaccine got rid of Polio. Just like Penicillin and all of the rest of
the antibiotics help with curing infections.

I think that we all should take an example from Millie. She may have some
debilitating things going on but she still keeps herself busy with making
her pillow cases and shams and the like. She says that it is nuts, but is
it really?

She further says that, and I quote her exact words: "*I know it's nuts, but
doing these things, keeps me going (like the energizer bunny) and takes my
mind off of everything else."*

Enough said judge for yourself. Get doing things that you like, I guarantee
that it will make you feel better.
I always say that your mind is a very powerful tool, you just have to learn
to use it in constructive ways.

Now I'm not saying that it is going to cure you of any disease but you will
feel better when your doing something that you enjoy. Isn't that what life
is all about?

Busy hands make happy minds.

18's,

Marty



On Sat, Jul 20, 2013 at 4:06 PM, C.M. Houtz  wrote:

> **
> *Hi Susan,*
> **
> *I'm glad that you are going to get some help with your issues.  I know
> that once you deal with them, it will make your life so much easier.  I
> know that I feel that dealing with my liver problem is so much better then
> not knowing and worrying all of the time.  We all face a lot of things with
> this CML.  It's different, but the same because we all have to deal with
> what is.  If we had a choice, it wouldn't be to have these problems, but
> here we areand you are right, connecting with others going through
> similar things helps us all.  Right now, I'm worried about being on a
> forced vacation from my Tasigna, but have no choice until my Doctor can
> come up with something.  I know that he will.  I have such faith in this
> man and he has always come through for me.  My other health issues are
> getting worse, but am trying to deal with them too.  Marty always inspires
> me as I know that he's going through so much and still has such a positive
> attitude.  I try, and usually succeed in doing that.  When I get down, I
> try to think about all of my CML friends who are dealing with so many
> things..and know that each day I have is precious and that's always been
> something I try to remember.  I try to take each day as it comes and be the
> happiest I can be and do things that make me happy.  Today has been a rough
> one.Mostly pain in the left side of the middle section of my back
> radiating around to the side.  I just couldn't get rid of the pain, and
> ended up back in bed with pain meds and put heat on it.  Usually, laying
> down will ease it some.  They (the doctors) don't seem to know what's
> causing it.  My Oncologist seems to think it's my gall, but the others
> don't agree.  I think he could be correct.  To bad he isn't the one to make
> that decision.  Today the pain came clear around to the front and I had to
> deal with it.  I finally gave up and took a shower, came down, ate a little
> and took my pain meds again.  I'm feeling  better now, and will just go on
> and do something I like to do*
> **
> *I finished one pillow case last night, but need to see if I have any
> white crochet thread to make an edging on it.  I have a quilt done in
> blues, white, and yellowthat I only use for good.  I am making these
> pillow cases to go with that, and have shams to finish up for it too.  I
> know it's nuts, but doing these things, keeps me going (like the energizer
> bunny) and takes my mind off of everything else.*
> **
> *You take care, my friend.  I know that you're dealing with so much, so
> keep us informed.  Our love, prayers, and hugs are coming your way.  Millie
> *
>
> --
> --
> [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
> To unsubscribe from this group, send email to
> cmlhope-unsubscr...@googlegroups.com
> For more options, visit this group at
> http://groups.google.com/group/CMLHope
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Re: [CMLHope] Re: Hi

2013-07-20 Thread C.M. Houtz
Hi MartyHope that you're having a wonderful day in Pennsylvania.  I wish I 
could get out, but today hasn't been wonderful.  I'm dealing with a lot of 
pain, and now have it under control, so will enjoy the rest of my day the best 
way I can.  I just wanted to touch base with you and tell you that you are 
never far from my thoughts.  Lately, we have all come together in such a 
positive way.  It sure helps having friends like the people in this group.  I 
hope that we will all continue to be there for one another.  I tried to 
download the site you said could connect us all.  The name escapes me right 
now, but it wouldn't download it completely, and also wouldn't let me get rid 
of it all, so on Monday, I'll call my computer guy and see if he can get on 
here and fix everything I've messed up.  He can do it from his office, so that 
makes our lives easier.  I'll see if he can download it for meand correct 
whatever I did to mess things up.  Usually, I'm pretty good at these things, 
but he has put things (walls) whatever, in here that prevent me from getting 
some pictures and also prevents my downloading some things, so perhaps that's 
what has happened.  I'll keep trying until I get it right.   

You have a great weekend.  God knew what he was doing when he put you into our 
lives.  You inspire each and everyone of us with your life stories and just the 
way you look at things.  I'm working on being that way.  I will talk to you 
soon.  Many hugs and 18's my friend,  Millie

-- 
-- 
[CMLHope]
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Re: [CMLHope] Re: Hi

2013-07-20 Thread C.M. Houtz
Hi Beth,  I'm trying to catch up on my e-mails now, and that's always a nice 
thing to do as I get to read what everyone has written again.  Sometimes, I 
miss things in the first reading and when I go back, find out something new.

I know that you deal with more then most of usor different.  It is 
surprising how these drugs work on each one of us in different ways.  They have 
kept us alive though, and even though we have issues, at least we are here to 
try to deal with them.

As I told Susan, I was having a bad day (with other issues), and finally got 
the pain under control, so now I'll find something to do that makes me happy.  
I took the day off from cooking, and everyone is on their own, or we might 
order out.  Time will tell.  I'd say we'd go out, but I no longer can get up 
from most chairs without a lot of  help, and my son, Chris, has sciatica and so 
we're in really good shape.  He can't sit for long, and is dealing with a lot 
of pain.  So far, my husband is able to do the shopping and tries to help, but 
at 83...almost 84, he is very forgetful, and the three of us, right now, are 
laughing matters!!!  If I don't laugh, I might cry, and I certainly don't want 
to do that. :>

I do keep everyone in my daily prayers.  I know that each one of us deal with 
so many things, but we also have a great bond with one another, and that helps 
me, and I'm sure everyone else too.  You take care of yourself, and let us hear 
from you often.  Many hugs, and 18's as Marty says.  I think it is a wonderful 
thing to celebrate life.  Millie

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Re: [CMLHope] Re: Hi

2013-07-20 Thread C.M. Houtz
Hi Susan,

I'm glad that you are going to get some help with your issues.  I know that 
once you deal with them, it will make your life so much easier.  I know that I 
feel that dealing with my liver problem is so much better then not knowing and 
worrying all of the time.  We all face a lot of things with this CML.  It's 
different, but the same because we all have to deal with what is.  If we had a 
choice, it wouldn't be to have these problems, but here we areand you are 
right, connecting with others going through similar things helps us all.  Right 
now, I'm worried about being on a forced vacation from my Tasigna, but have no 
choice until my Doctor can come up with something.  I know that he will.  I 
have such faith in this man and he has always come through for me.  My other 
health issues are getting worse, but am trying to deal with them too.  Marty 
always inspires me as I know that he's going through so much and still has such 
a positive attitude.  I try, and usually succeed in doing that.  When I get 
down, I try to think about all of my CML friends who are dealing with so many 
things..and know that each day I have is precious and that's always been 
something I try to remember.  I try to take each day as it comes and be the 
happiest I can be and do things that make me happy.  Today has been a rough 
one.Mostly pain in the left side of the middle section of my back radiating 
around to the side.  I just couldn't get rid of the pain, and ended up back in 
bed with pain meds and put heat on it.  Usually, laying down will ease it some. 
 They (the doctors) don't seem to know what's causing it.  My Oncologist seems 
to think it's my gall, but the others don't agree.  I think he could be 
correct.  To bad he isn't the one to make that decision.  Today the pain came 
clear around to the front and I had to deal with it.  I finally gave up and 
took a shower, came down, ate a little and took my pain meds again.  I'm 
feeling  better now, and will just go on and do something I like to do

I finished one pillow case last night, but need to see if I have any white 
crochet thread to make an edging on it.  I have a quilt done in blues, white, 
and yellowthat I only use for good.  I am making these pillow cases to go 
with that, and have shams to finish up for it too.  I know it's nuts, but doing 
these things, keeps me going (like the energizer bunny) and takes my mind off 
of everything else.

You take care, my friend.  I know that you're dealing with so much, so keep us 
informed.  Our love, prayers, and hugs are coming your way.  Millie

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Re: [CMLHope] Re: Hi

2013-07-20 Thread bkbarney

Dear Susan,


I am so glad you are taking action..and it sounds like you have a great 
action place in place. Keep us posted and let us know how you are doing! Beth


-Original Message-
From: Susan Zimmerman 
To: cmlhope 
Sent: Sat, Jul 20, 2013 9:17 am
Subject: Re: [CMLHope] Re: Hi


Thanks all so very much for the encouragement.  I think I've made my decision 
about where to go, will contact Northwestern univ. on Monday to see a 
specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in 
Tampa (my former specialist).  You have no idea how you've helped me just by 
your comments.  After six years without medicine I needed a swift kick to get 
me DOING something about all this.  As you say, Beth, help is out there but I 
just have not had the gumption to get going about it.  Richard, your comments 
have also been so very helpful. 


Thanks again,

18's,

Susan 




-Original Message-
From: Richard H 
To: cmlhope 
Sent: Sat, Jul 20, 2013 1:25 am
Subject: Re: [CMLHope] Re: Hi


You are spot on about having the right specialist.  I am very fortunate to have 
an ONC that is a specialist in CML and he has at least one other CML specialist 
in rhe same group to concult with.  Last year the total group became part of 
the latest desinated National Cancer Centers. 


Richard H.. 

On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote:
Amen! Specialist who deal with CML and know the ins and outs of the disease and 
how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and 
it helps me immensely. I Have found it's not a lack of concern of general 
oncologist, but a lack of experience with CML or the new drugs, or how they 
might be administered..for each unique person and theri circumstances. Sounds 
goodget off the a---..and get cooking. Help is out there.and we will 
cheer you on.I too need a swift kick in the pants some times to inspire me 
to further action. It's not an easy road..and sometimes we can be weary 
travelers...so we set and rest for atime..and then do something to inspire to 
get up and do what we can. we are here for you!
Hang in there MIllie..I love that you are busy doing your crochetinglove 
...Beth


-Original Message-
From: Susan Zimmerman 
To: cmlhope 
Sent: Fri, Jul 19, 2013 9:52 am
Subject: Re: [CMLHope] Re: Hi


Thanks so much, Beth!!!  I'm getting on the phone this afternoon come hell or 
high water!  
Somebody that holds great weight with me told me to get off my a__ and get 
moving toward a specialist, so I guess I'll do it! 


18's

Susan 




-Original Message-
From: bkbarney 
To: cmlhope 
Sent: Fri, Jul 19, 2013 11:18 am
Subject: Re: [CMLHope] Re: Hi


Dear Susan,
 
So sorry you are struggling. But I am so glad you are listening to the warning 
sides of your body and paying attention. So often people override their own 
knowing or their doctors won't listen...You stay strong and be a good advocate 
for yourself.  I am on sprycel at a lower dose nowtitrating down to 
whatever will hold my numbers, and give me the least complicatons..The good 
news about most of the newer drugs, like sprycel and ponatinib is they are so 
much more potent than gleevec and tasigna are, so less drug, can sometimes do 
the job well for some folks. I was on bosutinib, unfortunately it's the only 
drug that did nothing for me, I had bad side effects on it, and when I found 
out the cancer marched right through it for me, I stopped immediately and went 
back on sprycel, which at a low dose, works for me. A high dose is not an 
option for many. I have not tried ponatinib, but have heard good things from my 
oncologist that the people she is treating with it, on lowered doses, are in 
remission and are not suffering severe side effects. It does have the liver 
pancreas profile of possible side effects there, but like tasigna, it's just a 
personal thing how each drug affects us.  I would encourage tou to work with 
your doc and come up with a plan to try one of the newer drugs and see how it 
goes. I have heard about DR PInella's idea about a vaccine. It is not yet an 
option, but you can read about the latest research at work for us on the LLS 
site, as well as Moffit'sas my friend is down there healing from a bone 
marrow transplant, she is in the clinic every day..I will ask her to look into 
Dr PInella's research and see where it stands currently. I will let you know 
what I find out! Take good care Susan, stay positive, this is another pot hole 
in the road, but you can and will figure out what the next best step is...it 
may take time to tweak your meds and get the numbers back in line, but it will 
happen...stay protective and proactive...thinking of you and all my fellow 
warriors...hope you all have a great weekend ahead~
 
Beth



-Original Message-
From: Susan Zimmerman 
To: cmlhope 
Sent: Fri, Jul 19, 2013 6:48 am
Subject: Re: [CMLHope] Re: Hi


Hello all, 


Thanks so much for the inspira

Re: [CMLHope] Re: Hi

2013-07-20 Thread Myvety2k
Hi Susan, I started going to Northwestern Univ. in 1999 to see  a Doctor 
named Dr. Tallman.  He saved my life when he put me into a study  with Gleevec 
in Jan. of 2000.  He has moved on to a different Hosp.  but my new Doctor 
is just as good if not better.  I'm very happy with all  of the people that I 
have come in contact with, they are my new  family.   Love them all.  You 
picked a great place to go  to.  Good luck and keep me posted.  Greenie
 
 
In a message dated 7/20/2013 11:17:36 A.M. Eastern Daylight Time,  
rszim0...@aol.com writes:

Thanks all so very much for the encouragement.  I think I've made my 
decision about where to go, will contact  Northwestern univ. on Monday to see a 
specialist who was recommended by Dr.  Pinilla from Moffitt Cancer Center in 
Tampa (my former specialist).  You  have no idea how you've helped me just by 
your comments.  After six years  without medicine I needed a swift kick to 
get me DOING something about all  this.  As you say, Beth, help is out there 
but I just have not had the  gumption to get going about it.  Richard, your 
comments have also been so  very helpful.  


Thanks again,
18's,
Susan 




-Original  Message-
From: Richard H 
To:  cmlhope 
Sent: Sat, Jul 20, 2013 1:25  am
Subject: Re: [CMLHope] Re: Hi

You are spot on  about having the right specialist.  I am very fortunate to 
have an ONC  that is a specialist in CML and he has at least one other CML 
specialist in  rhe same group to concult with.  Last year the total group 
became part of  the latest desinated National Cancer Centers.  


Richard H.. 

On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth  wrote:  
Amen! Specialist who deal with CML and  know the ins and outs of the 
disease and how to treat it are the way to go!  I traveled to Oregon to see Dr. 
Druker and it helps me immensely. I Have  found it's not a lack of concern of 
general oncologist, but a lack of  experience with CML or the new drugs, or 
how they might be administered..for  each unique person and theri 
circumstances. Sounds goodget off the  a---..and get cooking. Help is out 
there.and we will cheer you on.I  too need a swift kick in the pants 
some 
times to inspire me to further  action. It's not an easy road..and sometimes 
we can be weary travelers...so  we set and rest for atime..and then do som
ething to inspire to get up and do  what we can. we are here for you!
Hang in there MIllie..I love  that you are busy doing your 
crochetinglove ...Beth

-Original  Message-
From: Susan Zimmerman 
To:  cmlhope 
Sent: Fri, Jul 19, 2013  9:52 am
Subject: Re: [CMLHope] Re: Hi

Thanks so much, Beth!!!  I'm  getting on the phone this afternoon come hell 
or high water!  
Somebody that holds great weight with me told me to get off my a__  and get 
moving toward a specialist, so I guess I'll do it!  

18's
Susan 




-Original  Message-
From: bkbarney 
To: cmlhope  
Sent: Fri, Jul 19, 2013 11:18  am
Subject: Re: [CMLHope] Re: Hi


Dear Susan,
 
So sorry you are struggling. But I am so glad you are listening to the  
warning sides of your body and paying attention. So often people override  
their own knowing or their doctors won't listen...You stay strong and be a  
good 
advocate for yourself.  I am on sprycel at a lower dose  nowtitrating 
down to whatever will hold my numbers, and give me the  least 
complicatons..The good news about most of the newer drugs, like  sprycel and 
ponatinib is 
they are so much more potent than gleevec and  tasigna are, so less drug, can 
sometimes do the job well for some folks. I  was on bosutinib, 
unfortunately it's the only drug that did nothing for me,  I had bad side 
effects on it, 
and when I found out the cancer marched right  through it for me, I stopped 
immediately and went back on sprycel, which at  a low dose, works for me. A 
high dose is not an option for many. I have not  tried ponatinib, but have 
heard good things from my oncologist that the  people she is treating with 
it, on lowered doses, are in remission and are  not suffering severe side 
effects. It does have the liver pancreas profile  of possible side effects 
there, but like tasigna, it's just a personal  thing how each drug affects us.  
I would encourage tou to work with  your doc and come up with a plan to try 
one of the newer drugs and see how  it goes. I have heard about DR PInella's 
idea about a vaccine. It is not yet  an option, but you can read about the 
latest research at work for us on the  LLS site, as well as Moffit'sas 
my friend is down there healing from a  bone marrow transplant, she is in the 
clinic every day..I will ask her to  look into Dr PInella's research and 
see where it stands currently. I will  let you know what I find out! Take good 
care Susan, stay positive, this is  another pot hole in the road, but you 
can and will figure out what the next  best step is...it may take time to 
tweak your meds and get the numbers back  in line, but 

Re: [CMLHope] Re: Hi

2013-07-20 Thread Susan Zimmerman
Thanks all so very much for the encouragement.  I think I've made my decision 
about where to go, will contact Northwestern univ. on Monday to see a 
specialist who was recommended by Dr. Pinilla from Moffitt Cancer Center in 
Tampa (my former specialist).  You have no idea how you've helped me just by 
your comments.  After six years without medicine I needed a swift kick to get 
me DOING something about all this.  As you say, Beth, help is out there but I 
just have not had the gumption to get going about it.  Richard, your comments 
have also been so very helpful.


Thanks again,

18's,

Susan 




-Original Message-
From: Richard H 
To: cmlhope 
Sent: Sat, Jul 20, 2013 1:25 am
Subject: Re: [CMLHope] Re: Hi


You are spot on about having the right specialist.  I am very fortunate to have 
an ONC that is a specialist in CML and he has at least one other CML specialist 
in rhe same group to concult with.  Last year the total group became part of 
the latest desinated National Cancer Centers.


Richard H.. 

On Friday, July 19, 2013 11:38:47 AM UTC-5, Beth wrote:
Amen! Specialist who deal with CML and know the ins and outs of the disease and 
how to treat it are the way to go! I traveled to Oregon to see Dr. Druker and 
it helps me immensely. I Have found it's not a lack of concern of general 
oncologist, but a lack of experience with CML or the new drugs, or how they 
might be administered..for each unique person and theri circumstances. Sounds 
goodget off the a---..and get cooking. Help is out there.and we will 
cheer you on.I too need a swift kick in the pants some times to inspire me 
to further action. It's not an easy road..and sometimes we can be weary 
travelers...so we set and rest for atime..and then do something to inspire to 
get up and do what we can. we are here for you!
Hang in there MIllie..I love that you are busy doing your crochetinglove 
...Beth


-Original Message-
From: Susan Zimmerman 
To: cmlhope 
Sent: Fri, Jul 19, 2013 9:52 am
Subject: Re: [CMLHope] Re: Hi


Thanks so much, Beth!!!  I'm getting on the phone this afternoon come hell or 
high water!  
Somebody that holds great weight with me told me to get off my a__ and get 
moving toward a specialist, so I guess I'll do it! 


18's

Susan 




-Original Message-
From: bkbarney 
To: cmlhope 
Sent: Fri, Jul 19, 2013 11:18 am
Subject: Re: [CMLHope] Re: Hi


Dear Susan,
 
So sorry you are struggling. But I am so glad you are listening to the warning 
sides of your body and paying attention. So often people override their own 
knowing or their doctors won't listen...You stay strong and be a good advocate 
for yourself.  I am on sprycel at a lower dose nowtitrating down to 
whatever will hold my numbers, and give me the least complicatons..The good 
news about most of the newer drugs, like sprycel and ponatinib is they are so 
much more potent than gleevec and tasigna are, so less drug, can sometimes do 
the job well for some folks. I was on bosutinib, unfortunately it's the only 
drug that did nothing for me, I had bad side effects on it, and when I found 
out the cancer marched right through it for me, I stopped immediately and went 
back on sprycel, which at a low dose, works for me. A high dose is not an 
option for many. I have not tried ponatinib, but have heard good things from my 
oncologist that the people she is treating with it, on lowered doses, are in 
remission and are not suffering severe side effects. It does have the liver 
pancreas profile of possible side effects there, but like tasigna, it's just a 
personal thing how each drug affects us.  I would encourage tou to work with 
your doc and come up with a plan to try one of the newer drugs and see how it 
goes. I have heard about DR PInella's idea about a vaccine. It is not yet an 
option, but you can read about the latest research at work for us on the LLS 
site, as well as Moffit'sas my friend is down there healing from a bone 
marrow transplant, she is in the clinic every day..I will ask her to look into 
Dr PInella's research and see where it stands currently. I will let you know 
what I find out! Take good care Susan, stay positive, this is another pot hole 
in the road, but you can and will figure out what the next best step is...it 
may take time to tweak your meds and get the numbers back in line, but it will 
happen...stay protective and proactive...thinking of you and all my fellow 
warriors...hope you all have a great weekend ahead~
 
Beth



-Original Message-
From: Susan Zimmerman 
To: cmlhope 
Sent: Fri, Jul 19, 2013 6:48 am
Subject: Re: [CMLHope] Re: Hi


Hello all, 


Thanks so much for the inspiration, Millie, Marty, Richard and Beth!  You guys 
are fantastic and I am suddenly most aware of your help and encouragement.  
Marcie has also helped amazingly with that!  During the six years while not on 
gleevec against my doc's orders, I skipped over most cml google group posts as 
I was not dwel

Re: [CMLHope]

2013-07-20 Thread Richard H
Thanks Marty.  You are correct.  I applaud you for your dedication,  There 
was a time when I owned a treadmill used it. There was a period of time I 
walked 3 miles 5 days a week in a business park or mall.  When I moved to 
our apartment the owners did not want to let the treadmill be moved into 
the storm basement,  I lost the job so the business park and mall are too 
far away to use.  At different times, I have attempted walk the sidewalks 
of the apartment complex to rebuild my staminia enough to go to the health 
club and have the equipment available.  One of the classes I have taken 
pointed out the most interesting excerise routines to rebuild that staminia 
we all need.  When you are parked in front of your favorite TV shows, stand 
up and walk in place during during the commercials.  When you finish an 
hour show you will have excercised 14 minutes.

Richard H.

On Friday, July 19, 2013 4:20:14 AM UTC-5, wa2yyx wrote:
>
> Hi Richard,
>
> Well to be honest with you I must have been cut from the same mold that 
> you were. However, there is one big difference. I am on dialysis and my 
> energy level is next to nothing after my treatments and for the next day 
> afterward then it's back again to another dialysis treatment and so on. 
>
> Here is the difference... I do not let this control me because I just try 
> working through this and so can you if you really want to give it a try.
>
> No one says that you must exhaust yourself with exercise but you should 
> try doing some even for five minutes each day. After a week or so simply 
> increase it to ten minutes a day. Try getting onto a stationary bike or 
> even a tread mill but just resign yourself to do it on a regular basis, 
> maybe three or four times a week. You see, I know you can do it, now it is 
> you that has to make this discussion to be able to help yourself because 
> after all is said and done it is your decision.
>
> Guess where I will be going later on this morning? There is a exercise 
> building in my community and I will be spending about a half hour there on 
> the tread mill. Do I become exhausted? Of course I do but the more that I 
> do it the better off I am, and the better I feel sometimes actually 
> exhilarated. Today being Friday is one of the days I get my dialysis but it 
> still won't stop me from helping myself., 
>
> And by the way, since my Hemoglobin is usually low in the 10 range I am 
> Anemic so I get Epogen (Procrit) to try and keep it as high as possible but 
> I am still going to do some exercise.
>
> Richard since your doctor is suggesting that you exercise just try it. No 
> one says that you must do it until you drop but just start off very slowly 
> and you will see that it will get better every time. At first your probably 
> going to get some charlie horses because your mussels aren't used to it but 
> they will go away.
>
> Remember Richard, you are the only one that can best take care of 
> yourself. I know you can, now you must do that for yourself.
>
> Richard, it has been more then twenty three years since I had my bone 
> marrow transplant. In all of this time I have devoted myself to try and 
> help others with CML. There is one young man by the name of Adam that I did 
> help and he wrote something about me, especially when I had to live is a 
> small plastic bubble in a hospital. It mainly concerns about what I used to 
> do about doing some exercise while I had to live in that plastic bubble and 
> I would like you to read it...
>
> 18;s
>
> Marty
>
> I have many Marty stories I would love to share with you, but I would 
> like to tell you one in particular which has been passed along, becoming a 
> tool for someone elses recovery and health. Its a real Marty story; full 
> of examples. It is about how, despite his profound exhaustion (an 
> exhaustion not easily imaginable to those who havent been zapped with 
> high doses of chemotherapy and radiation we were) he would force himself 
> out of bed in order to march in place to some music for fifteen minutes of 
> exhaustion each day B a heroic act, I can tell you. 
>
> In order to get himself through this agony, he found it necessary to rivet 
> his eyes on a nylon plastic screw, which fastened his bubble room to the 
> ceiling.
>
> Looking at this particular screw B it was it was a 7/16 inch number 6 
> machine screw with a pan head  he was able to enter a trancelike state, 
> to ignore his torment long enough to get through this grueling regimen 
> without collapsing. Now, one day he finished his march, all sweaty and bone 
> weary and winded, his head swimming from the exercise, he happened to 
> glance outside the bubble, and there on the other side, he saw a bunch of 
> his nurses marching in time with the music! They were marching to Martys 
> music! Aerobics with Marty!
>
> Marty loves to tell this story, and I must have showed that I loved to 
> hear him tell it, because shortly before I was to enter the hospital I 
> received ..