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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