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 initially left me numb from the waist down, and I
lost the ability to walk for about six months. Since the tumor was
in my neck, the radiation did make it impossible to eat solid food
for the duration, and I was left with carnation instant breakfast,
and jello, but that did go away. So I wouldnt worry about it too
much, time should heal those things.

--- In ewingssarcoma@yahoogroups.com, Randi McIlwain
<randimcilwain@...> wrote:
>
> 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 radiation was supposed to be pointed at a
driect location. and each treatment only lasted about 2 minutes. 15
seconds from 3 angles, left, right and a straight shot. they did
warn me as they are supposed that this can all cause some forms of
cancer to come back. i personally think the worst thing that has
happened to me is that i've lost sensitivity in my reproductive
organ to put it nicely. but the way the doctors put it is; it can
take some time because the radiation has fried some of the nerves
and it will take some time to come back.
>
> did you have this problem? i can't stand it, it really puts a
damper on the sexual part of a marriage. talk to you soon. hope all
is well.
>
> Jason
>
> Kyle Frick <kylefrick_ks@...> wrote:
> 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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