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Two Strikes....   Message List  
Reply | Forward Message #128 of 519 |
Re: [Ewings Sarcoma] Two Strikes....

I have a little advice. Think about it this way: If your body could deal with
it the first time, why should the second be any different. I have a friend who
has a similar situation to yours. She had Ewings in her leg, was in remission
for 17 years, and it came back in her chest. The good news is that she's been
in remission now for 4 or 5 years. Hope that is a little encouraging.

Lexi

Kyle <kylefrick_ks@...> wrote:
I was first diagnosed with Ewing's Sarcoma in Sept. of 1986, and went
through all the chemo regimens they had at the time: Cytoxin,
Actiniomyacin, Adriomyacin, Vinctristine, plus 3 months of radiation
concurrently. The tumor was located in my T3-C7 vertebrae, so you
can imagine how much fun that was. So now I am going to fast forward
to Sept. 2002. I started getting aches in my lower back, and didn't
think much about it, I took some Advil, and it seemed to help for a
while. A couple of weeks later, the pain moved to the middle of my
back, but again, I didn't think much about it, it had been over 15
years, and I was well out of the woods. The pain eventually moved up
to the same spot that my tumor was in before, and became so intense
that I could do nothing but stay in bed. I new at that time what was
going on, and it was confirmed by the Oncology dept. at the
University of Kansas Hospital. My insurance considered this a pre-
existing condition, and promptly cancelled my policy. I was able to
get medicaid, and went through a years worth of Ifos and Messna. I
am also not nearly as resilient as I was when I was 16. This time
the cancer took away my ability to walk, and it took me 6 months and
four surgeries just to be able to get around by myself. I am 33 now,
and I have lost my career, and a large part of my life. I feel for
anyone who is going through this as a teenager now...but I have to
warn you...this may not be the last time you have to deal with this.
I read in one of the messages that someone was just waiting around
for the other shoe to drop, and frankly I could not agree with that
person more. I guess I am just wondering where to go from here...


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Mon Nov 3, 2003 1:31 am

smallchopp
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Message #128 of 519 |
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I was first diagnosed with Ewing's Sarcoma in Sept. of 1986, and went through all the chemo regimens they had at the time: Cytoxin, Actiniomyacin, Adriomyacin,...
Kyle
kylefrick_ks
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Nov 2, 2003
10:42 pm

I have a little advice. Think about it this way: If your body could deal with it the first time, why should the second be any different. I have a friend who...
Lexi Chopp
smallchopp
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Nov 3, 2003
1:31 am

I know attitude is everything, but sometimes it is a little hard when you have to take 18mg. of Dilaudid (Hydromorphone HCL)every 4 hours just to be able to...
Kyle
kylefrick_ks
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Nov 3, 2003
6:18 am

You have to trust me on this one: i know how you feel. i went through my ewings at age 5. i had no idea whatsoever what was going on, and had so many things...
Lexi Chopp
smallchopp
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Nov 3, 2003
9:49 pm

Hi I have been reading your emails about ewings coming back say in years down the road but you have to look at it in the context that a cure may be found...
patriciasmith
milly_cat2001
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Nov 3, 2003
8:16 am

Kyle, My name is Amanda. My uncle Gary has done lots of work with ES angels. I have not had ES myself but would like to offer my ears. If you ever need to...
amanda4garysuboter
amanda4garys...
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Jan 9, 2004
5:05 am
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