I wish other treatment options had been mentioned to
us as they are to you. We did the exact same thing
you did basically and were told we were finished.
Then 3 months later it came back. You want to finish
this awful thing off any way you can so it will not
reccur. There are not to many options if it does. We
are on our second clinical trial and it is extremely
scary. Believe me if I had know them what I know now
I would do everything to finish this thing off. It is
hard to think of when you think it is gone (and it may
be) but you never know. It has recurred in both his
lungs and we are dealing with it now. How were the
margins? Ours were clear and it still came back. So
be careful. I know you are ready to be done, but
better finish it now than start all over again.
--- marybeth adkins <jazzmbm@...> wrote:
>
>
>
> Dear Dave,
>
> How old is your son? how well did he respond to the
> chemo? why no radiation?
>
> My daughter is nine and was treated at St. Jude's
> and her tumor was 14x9x9 in the pelvic region. Our
> tumor was very large and I have not been told what
> you have been told. I have been told reoccurance
> depends on child's initial response to treatment,
> age, health of child prior to chemo, there are many
> factors. I don't think we are ever reassured of no
> reoccurance and if reoccurance happens I am told it
> is in later years that the possibility is higher.
>
>
>
> Marybeth
>
> jazzmbm@...
>
>
>
> dave987321 <no_reply@yahoogroups.com> wrote: My son
> was diagnosed with Ewing's in Dec '02. He had three
>
> months of chemo, surgery, and then more chemo for a
> total of
> 11 months of treatment. He just finished his final
> round
> of chemo. He had a large tumor in his pelvis, 1.3
> liters.
> The surgery was an autoclave, autograph. (i.e. They
> removed
> the portion of his pelvis with the tumor, autoclaved
> the
> bone, and put the bone back in.)
>
> As we were approaching the end of his chemo, his
> oncologist
> started considering further treatment options. This
> came as
> a surprise because we were looking forward to being
> done and
> nothing had been mentioned prior to this. His
> oncologist is
> concerned that with the size of the tumor, a
> recurrence is
> more likely.
>
> Localized radiation was the first consideration, but
> we have
> ruled it out. We are aware of stem cell transplants,
> but
> don't know how helpful
> this is likely to be. It seems like when you talk
> to
> different doctors regarding treatment options and
> effectiveness,
> you get different opinions. This leaves us as the
> final
> decision makers, and we feel wholefully uninformed
> to be making
> these decisions. It has been hard to find
> information specific
> enough to his case to base decisions on.
>
> Of course, we have numerous questions, but here are
> a couple of
> the top ones we are trying to answer:
> How does his tumor size compare with other
> survivors?
> To what degree does the tumor size indicate that
> maybe a more
> aggressive treatment is appropriate?
> What additional treatments might be appropriate
> given
> the size of the tumor?
>
> Any help or referals to sources of information would
> be
> very appreciated.
>
> Thanks,
> Dave
>
>
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