Hello dave.. i dont know that i really know how to help you. I was always told
it is just a risk and u dont know if u will get it back. but if hte chemo worked
extremely well and removal of the tumor as well the chances are less. at girl at
my hospital hers was in the pelvic and they were gonna amputate it last i was
told. my advice.. trust in the lord and may god bless u and your family!


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There are 4 messages in this issue.

Topics in this digest:

1. Large Tumor and Teatment Options
From: dave987321
2. Re: Large Tumor and Teatment Options
From: marybeth adkins
3. Re: Large Tumor and Teatment Options
From: Melissa Medley
4. Re: Large Tumor and Teatment Options
From: dave987321


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Wed, 05 Nov 2003 15:50:34 -0000
From: dave987321
Subject: Large Tumor and Teatment Options

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



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Wed, 5 Nov 2003 10:03:05 -0800 (PST)
From: marybeth adkins
Subject: Re: Large Tumor and Teatment Options




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 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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________________________________________________________________________
________________________________________________________________________

Message: 3
Date: Wed, 5 Nov 2003 12:10:20 -0800 (PST)
From: Melissa Medley
Subject: Re: Large Tumor and Teatment Options

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 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 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
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
> To unsubscribe from this group, send an email to:
> ewingssarcoma-unsubscribe@yahoogroups.com
>
>
>
> Your use of Yahoo! Groups is subject to the Yahoo!
> Terms of Service.
>
>
>
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> [Non-text portions of this message have been
> removed]
>
>


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Message: 4
Date: Thu, 06 Nov 2003 02:44:11 -0000
From: dave987321
Subject: Re: Large Tumor and Teatment Options

Thank for the help. My son is now 16. He was 15 at diagnosis. He
had a good radiologic response prior to surgery from the initial
chemotherapy. The pathology from his surgery showed only microscopic
remants of tumor. The margins were clear except for the part that
was autoclaved. Because any leftover tumor was killed in the
autoclave we do not see the benefit of radiation. The radiation
oncologist and the orthopedic oncolgist agree. The other problem was
that he had 5 nodules in his lung prior to chemo 9mm, 5mm, 4mm,4mm
and 3mm. They all went away in a month. So another big question is
do these size nodules count as metastatic disease, making a stem cell
transplant more indicated.

Dave

--- In ewingssarcoma@yahoogroups.com, Melissa Medley
wrote:
> 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 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@y...
> >




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