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Hello Pat &
Marcia,
I too
have these same problems, so good to know one is not alone or crazy. I
take phenegran to help with the nausea. I first tried compazene but could
not tolerate that. It does seem like the doctors don't care very
much. Their thinking seems to be we should feel fortunate to be alive, but
there certainly are many days when the quality of life makes you want to
question why bother. As to the just being part of aging, I cannot
agree. I was 39 when diagnosed with CML and now am 41. I did
previously have arthritis but I firmly believe the Gleevec intensifies the
arthritis symptoms. Plus there are just over bad muscle spasms that aren't
associated with arthritis and even though I take muscle relaxers at night I can
still be woke out of a deep sleep with extreme muscle cramps.
Blessings to you both
and all other CMLers,
Lisa in NC
Hello Pat
Thank you for sharing your symptoms. I have exactly the same issues.
Nausea daily that subsides as the day goes on, and when I take my gleevec
it starts right back up with 1-2 hours. Chronic bone pain, that I have had
checked out and no explainable reasons other than gleevec. The doctors have
agree with my oncologist that this is a side affect from gleevec. And then the
stomach/bathroom issue, WOW! I take a pill to stop this and one to help that.
And when I don't take my gleevec for 24-48 hours everything subsides until I'm
back on it. I was very healthy before I was diagnosed except for anemia.
I am so thankful for GLEEVEC, and what it is doing for me, the trade off
of things get the best of me sometimes, but I quickly remind
myself how thankful I am for this drug and for
what is does for me!
So I understand you and know exactly what you are
dealing with. Everyone is different so side affects will be different from one
to another. I have been fortunate to have a home based business so I work when
I feel good and rest when I don't. I hope for many good days for
you.
God Bless, Peace Marcia
pat reynolds <[EMAIL PROTECTED]> wrote:
I'm
not saying "everyone's" bone pain is caused from
Gleevec, but mine is. I
don't need a doctor to read my
body, I know my body better than anyone
else on earth.
I know that I did not have this widespread,
constant
bone pain until the Gleevec, nor did I feel nauseated
every
second that I am awake, nor did I have to go to
the bathroom 6-8 times a
day, as soon as the food hits
my stomach. I had and still do have
headaches daily
but I had those prior to being dx'd so common
sense
tells me, well the Gleevec is not causing the
headaches. I also
had and still do have low grade
temps, so I also know this is not caused
by the
Gleevec. Gleevec is a wonderful drug and I am alive
today
because of it(I thank God every day for this
drug and Dr. Druker) but it
does have a price, a high
price for some of us and I'm not referring to
the
$2300 it costs my insurance every month. There are
side effects
and bone pain is one of them. And every
drug can affect people
differently. I'm 42 and I know
with age comes aches and pains. I have
arthritis in my
elbow that I broke in my teenage years, and it
hurts
occassionally, especially when it rains so I know that
now I'm
older, arthur has set up in a body part that
was injured years ago. I
don't blame every ache and
pain on Gleevec, only those things I
personally know
for a fact are caused by the Gleevec. You being
a
nurse, Shelly, I really didn't expect such a comment
from someone in
the medical field. We are urged to
share our experiences with each other
in hopes to help
each other, and I don't appreciate being told that
I'm
wrong for expressing what I know is a fact with my
body and my
experience with the Gleevec. My oncologist
told me just the other day
that he had had some
patients who couldn't tolerate the Gleevec at
all
because the side effects were so severe.....bone pain
was one of
them. I hope I haven't offended anyone by
sharing my side effects, my
story with everyone but I
really didn't appreciate the comment. Hope
everyone
has a good weekend. Love, Peace & Hope,
Pat
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