Livia, I appreciate your words of encouragement, and voicing your
opinion. I understand your feelings completely. I am aware that there
are people in other countries who need Gleevec and can't get it, and
that bothers me. However, I don't feel that not taking my Gleevec is a
sin, but if it is, it is my debt to pay to God if there is such a
thing. I'm not a very religious person, by that I mean I am not a
member of a or any church that I attend every Sunday, but I do
consider myself to be a spiritual person. I do have mixed emotions
about the Bible itself, but I won't get into the religious thing here
as it is off limits like politics. I am a smoker of 27 years, my
father started when he was 10 years old and smoked until the day he
died of age 80, that is 70 years, my mother also used tobacco
products, started at age 12 or so and lived to be 84. Smoking
cigerettes is an addiction. For some people, for genetic reasons,
cigerettes are as addictive to the smoker as heroin is to a heroin
addict. I guess this is my problem. I continue to try to quit. I was
doing well, not quit but was trying to slowly wean myself off of them,
and stress related events such as the death of my mother triggered a
complete relaspe. I have not quit taking my Gleevec completely, I just
don't take it as prescribed and there are days when I can't eat, I
don't take it at all on an empty stomach. Most days I can force down a
bowl of cereal and I take 3 to 4 Gleevec on those days. I do not have
an appetite, my appetite went away when I started the Gleevec. I used
to be a muncher, snacked all thru the day and ate 2 meals a day. I am
totally opposite of what others describe here, I have not gained
weight but lost weight. I do not have any bloating like others
describe, but I do wake up each morning with swollen eyelids and hard
to get the sleepies out of my eyes. I also have COPD which also
affects the appetite. Gleevec side effects are different for everyone.
I guess I must be an exception to the rule because the side effects
have not worn off and I've taken it for 2 years. They are not as
severe as they once were but still in my body and life.

I understand your situation being 27 and feeling like your mother may
outlive you. I once said those words some 2 years ago and many times
after that. I am so thankful that I was able to live and fulfill my
promise to my mother. I'm sorry you can not fulfill your dreams of  a
business to make your mother's life better. Don't stop dreaming and
trying....you can't win, if you don't play at all. Sometimes dreams do
come true. God works in mysterious ways or so I was taught to believe.

I do pray, I do read certain passages from the Bible that I find
comfort in, and I'm thankful for the Gleevec because regardless of how
I've taken it, it has kept me alive thus far. My last PCR test was
.0013. I know I couldn't have lived without the Gleevec, or would have
been on much worse chemo treatment. 

Thank you so much for your concern, encouragement and hugs. I would
like to meet you some day also. I know that my mother is in a better
place than I, a place where there is no more pain, or sorrow. I know
because I am still here suffering and she is not. I hope to know that
peace one day, I'm not afraid to die, it's just I have much more I'd
like to do in this life and hope that I will be blest to have the
opportunity to do it, if not, I know that I cannot not know what day
or what hour will be my last, but I'm ready spiritually.
Love, Peace, Hope & Prayers, Pat


-- In [email protected], livia klescova <[EMAIL PROTECTED]> wrote:
>
> Pat,
>   I really do not like that you are not taking Gleevec.  It is very
important for you to start take care of yourself.  You say love,
peace, hope, prayers... think about all those words.  Honestly I 
always repeat them when I am down.  I know you have been through so
much, but there are many other people who are going through a lot of
bad stuff including me, but I know that I am lucky that Gleevec is
working for me and it would be a sin to not take it.  It is really bad
bc you are hurting yourself.  I wonder why your empty stomach can
stand cigaretts and can't tolerate Gleevec.  I can't imagine that. 
There are people who can't take Gleevec bc their country doesn't have
it, they would exchange tons of cigaretts for your Gleevec. 
>   You have love bc I am sure there are many people around you who
love you, including us, your brothers and sisters.
>   You have hope, we always have hope and you are tolerating Gleevec,
so your hope should be strong in every occassion in your life.
>   Prayers, I guess you are a Christian, so open a bible and read, or
just pray with your own STRONG words.... and all of this should bring
you a peace. Peace is what you need.  When you think about all the bad
things, think on the other hand about all positive and good things
which has happened to you in your life.  I am sure there are many
light moments.  I am 27 and my mom is only 53.  It may happen that I
my mom will survive me.  I will not be the lucky one being able to
stay with her, take care with her, and what is worse I am so sick,
living in the US and I can't be with her.  Where are all my plans of
having a grandchild for her,  have my own business in Slovakia so she
will not need to work so hard, ??? Your mom is not here but  I believe
that you will meet her one day, in heaven.  So just enjoy your life
over here, because you have that right and I am sure your mom want's
you to be happy.... talk to her in your mind, like I always do...  My
mom is alive and I get to see her
>  once in a year for couple of days... that's all.  
>   Please any time email us, let us know what is going on,... and
remember we all love you. 
>   I wish to meet you one day, give you a hug and encouragement.  At
least I can send it to you via email.  Can you feel it ?  
>   Livia 
>   
> 
> Patricia <[EMAIL PROTECTED]> wrote:
>   Just wanted to update everyone on my last tests. I am negative on
my FISH and PCR was .0013. I don't have to go back until February.
This test the other day will be back in 2 weeks and I bet my numbers
will be back up again as I didn't take my gold for several days after
the loss of my mother. I could not eat at all, and when I tried to
eat, it came back up....and I cannot get the Gleevec to stay down at
all on empty stomach, so I didn't even attempt that. My  doctor tells
me, he doesn't anticipate the CML taking me out but rather these nasty
cigerettes that I just can't give up will. I get quit or almost or at
least trying and something dramatic happens, and I immediately reach
for a cigerette, run to the store to get 'em, steal 'em from my
husband. I'm praying to get through the holiday's and try to make some
changes in the new year. Hope all is well. Has anyone heard from Nancy
& Bob Wilheim? Haven't noticed her posting in a while. They both were
going thru some really hard
>  times.
> Love, Peace, Hope & Prayers, Pat 
> 
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