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My name is Kyle   Message List  
Reply | Forward Message #244 of 519 |
Re: [Ewings Sarcoma] Re: My name is Kyle

Mine came back after 15 years, which doctors are now
seeing a little more. They theorize it was because my
original radiation doseage was too much. My my
relapse was in 2002. The area in my spine where it
occurred started to increasingly hurt, so I finally
went back into the Oncology dept. at KUMED center. I
did nine months of Ifosfomide and Mezzna, but could do
no more radiation. I just had a CT scan, and a bone
scan done last week, and everything looks fine. I
think that there have been many advances in radiation
therapy in the last 15 years, so the risk of
recurrence has dropped dramatically. What sucked for
me, is after having checkup scans done for ten years,
KUMED finally told me I didnt need to come back!! I
have been looking at some of the charts they have on
Ewings sites on the web, and they are starting to show
a small spike in recurrence after ten years. Just
make sure that you understand everthing that the
radiation can do, and ask how new the technology is
that your hospital is using. There is a fairly new
radiation protocol called "cyber knife" where they
are able to pinpoint the area a lot better. I am sure
your husband is pretty aware of what goes on with his
body as fart as the cancer is concerned now, so just
keep an eye out. I think the first two years of post
treatment are critical, as far as getting check ups
and scans are concerned.
Good luck and best wishes!!
Kyle

--- Randi <randimcilwain@...> wrote:

> My husband was diagnosed in 2004 and did chemo and
> radiation all last
> year. i have to say that since i've read your post
> i'm soo worried
> about a relapse! how did you know it came back? it
> was such a tough
> year for us and our two boys- we have a 1 and 3 year
> old. this is my
> biggest fear! any advice you could give would be
> great!
>
>
>
> --- In ewingssarcoma@yahoogroups.com, "Kyle"
> <kylefrick_ks@...> wrote:
> >
> > I was diagnosed with Ewings in 1987, and again in
> 2001. I am 35,
> and
> > in remission once again. I was told that they are
> seeing relapses
> in
> > the disease due to excessive radiation treatment.
> Hopefully this
> last
> > time will be the last time I have a port in my
> chest, and go through
> > all the bodily changes that occur with treatment.
> My tumor is in my
> > spinal cord, and this time around, I lost the
> ability to walk for
> six
> > months. Shows how my ability to bounce back has
> diminished since I
> > was 16. If anyone has any questions, let me know!
> >
>
>
>
>
>


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Sat Apr 1, 2006 6:22 pm

kylefrick_ks
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Message #244 of 519 |
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I was diagnosed with Ewings in 1987, and again in 2001. I am 35, and in remission once again. I was told that they are seeing relapses in the disease due to...
Kyle
kylefrick_ks
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Nov 23, 2005
3:31 pm

... Kyle, thanks for posting. What kind of radiation did you have, and when in the treatment was it given? My stepson is getting ready to start radiation in...
Elizabeth
egr2058
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Nov 23, 2005
7:34 pm

My husband was diagnosed in 2004 and did chemo and radiation all last year. i have to say that since i've read your post i'm soo worried about a relapse! how...
Randi
randimcilwain
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Apr 1, 2006
4:11 am

Randi My sons recurred with a lump ob his head where he had bumped heads with someone. He then got another in his eyesocket, they radiated both. It comes back...
David
david43austr...
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Apr 1, 2006
6:45 am

Is anyone familiar with Ewings clusters? My little brother was diagnosed with Ewings as were 2 others in their mid-upper 20s that all worked within 10 feet of...
barry kaiman
bakaiman
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Apr 1, 2006
1:57 pm

Mine came back after 15 years, which doctors are now seeing a little more. They theorize it was because my original radiation doseage was too much. My my ...
Kyle Frick
kylefrick_ks
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Apr 1, 2006
6:22 pm

This is randi's husband Jason. My wife wanted me to read what you had to say. I went through 8 total months of chemo and 26 rounds of radiation. each round of...
Randi McIlwain
randimcilwain
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Apr 1, 2006
9:22 pm

Yeah, I experienced a little of the same thing, but I think mine was due to the fact that my tumor was in my spinal cord, and the five surgeries I had...
Kyle
kylefrick_ks
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Apr 7, 2006
2:25 pm

Hi there, I think we all live with the fear of relapse. I am the mother of a little girl diagnosed at age 8, we are now 12. She will be followed until age 18....
marybeth adkins
JAZZMBM
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Apr 1, 2006
9:24 pm
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