Ewing's Sarcoma [00319] Medicine On Line

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Ewing's Sarcoma

I just signed onto this e-mail group.  I don't actually know all the
abbreviations yet, so bear with me.   As a very concerned grandmother
(my 2 year old grand-daughter was diagnosed February `96 with Ewing's
Sarcoma), I am trying to find out any information I can.

I must say, there seems to be considerably less written on Ewing's
than other cancers, and I couldn't find any really relevant clinical
trials on the WWW either.

My grand-daughter Emma's primary tumor generated from a rib site,
metasticised to the lungs (doctors less sure the lung cancer Ewing's
-- but from what I have read on the WWW, Ewing's is diagnosed by
exclusion, so I doubt that is necessarily significant).  She is at Sick
Children's Hospital in Toronto and she is on a chemotherapy protocol
which seems fairly standard from what I have read, although they
are giving her 5 chemicals each session every 3 weeks, instead of an
alternating regimen which some studies indicate. [The 5 chemicals are
vincristine, cyclphosphamide, ifosfamide, etoposide, and adriamycin
(from information on the WWW I see that it is an alternative name
for doxorubicin).]

She had surgery last month -- primary removed, 2 ribs, and 5 lesions
from one lung.  They couldn't get all the cancer margins near the
vertebrae.  The pathology report is the most disturbing -- they
expected 80% dead cells -- but there were only 60%.  Primary tumor
itself 80% reduced.  She had been scheduled to have stem cells
harvested, and then after a 2 week massive chemo. treatment, have
them reinjected.  They are harvesting stem cells this week but the
transplant is delayed (till September?, and must be approved by
the Board).  Meanwhile, more chemo. according to the old schedule.
As far as I know, there is no radiation therapy planned -- one woman
told me that this reduced her odds of recovery -- anyone know?

I am trying to find out whether there are any other more promising
protocols on this continent.   Anyone who knows, or who knows about
clinical trials for Ewings, please let me know.

Her doctors seem not to pay attention to nutrition, but I read
in Science News that flavanoids may assist the effectiveness of
tamoxifen (breast cancer).  I also read that an ingredient in garlic
had the ability to kill cancer cells, even lung, in a lab experiment.
Do you have any advice about helping cancer patients with appropriate

What about "alternative medicine" strategies?--  mostly they sound
like hocus pocus to me, and certainly not a substitute for the best
medicine, however, some sound more like nutritional supplements -
e.g. pycnogenol.  Any thoughts on this?

Anyway, Emma is not my responsibility of course, but as her very
concerned grandmother, I am trying to find out any information I can.
Her parents have their hands full with her and their other 2 kids.
So I am trying to reach out by whatever means I have. 

Judy Pipher