From: candee@brtph5.bnr.ca (Candee Ellis P885)
Newsgroups: sci.med
Subject: Rhabdomyosarcoma: information and treatment
Date: 13 Apr 92 16:46:50 GMT
Organization: BNR, Inc. Research Triangle Park, NC
Originator: candee@brtph5


I am seeking information on rhabdomyosarcoma in general, especially
prognosis and treatment options, clinical trials, new research, etc.

My sister was diagnosed with rhabdomyosarcoma in November 1991 at age
26.5 years after complaining of pain in her side.  A CT scan showed a
mass and during exploratory surgery by her physicians in Savannah, GA in 
October 1991, a biopsy was taken.  When they were able to determine that 
the tumor was malignant but were unable to identify it further, they referred 
her to the Mayo Clinic.  She was transferred to St. Luke's Hospital in 
Jacksonville, FLA under the treatment of Mayo (satellite clinic) the first 
week of November.  All initial tests (MRI, bone scan, you name it) showed no 
metastasis.  She was in surgery for 7 hours on November 4, during which they 
removed 95% of the tumor, her right kidney, ovaries, uterus, and a part of her 
colon (no colostomy).  The surgeon said the tumor was larger than they had
thought -- about the size of a softball -- and that they were unable to
remove all of it because it was attached to the pelvic bone.  They,
apparently scraped the bone to remove as much as possible (he estimated 95%).  
I was told later that the tumor was initially graded at Stage 4, but was
reduced to Stage 2 after the surgery.

About mid-December she began a 6.5-week course of radiation therapy (5 days
a week).  She also began chemotherapy:  5 days of dactinomyacin, 12 weeks
of vincristine (once weekly), followed by Cytoxan (orally, I think -- and
I'm not sure for how long -- she has just started this).  

The week after she was finished with the vincristine, she began having pain
in her left side and some pain in her leg and hips (original tumor was on 
the right side).  A CT scan revealed nothing.  Since she refused to leave the 
hospital until it was determined what was causing her pain, they did an
MRI.  The MRI revealed a tumor on a nerve near her spine  (I don't know the
size -- because of the distance, most information comes to me through my 
mother, who doesn't always ask all the questions I might).  They are
treating this with 13 radiation treatments.  The last one is tomorrow,
April 14, at which time they will perform another MRI to check the size
of the tumor.  I don't know what the options are then, depending on what
they find.

Her original course of treatment was planned by physicians at the Mayo Clinic 
but is actually being administered by physicians in Savannah, GA.  Upon 
finding this second tumor, they have contacted Mayo and a pediatric 
hospital/center in Augusta, GA.  I have not heard of the outcome yet, 
if any (the frustration of being miles away and employed full-time....).
Is this considered a local or distant recurrence?  I assume this now 
qualifies as metastasis?  

I am unable to receive external e-mail, but if you post any responses to 
this newsgroup, I'll see them.  I would appreciate ANY information that 
anyone knows about rhabdomyosarcoma, and particularly, any experience with 
or knowledge of treatment plans and clinical trials.

Thank you,

Candee Ellis
Bell-Northern Research, Inc.
Research Triangle Park, NC