From: russ@pmafire.inel.gov (Russ Brown)
Date: Tue, 14 Apr 92 14:00:51 GMT
Organization: WINCO
Subject: Re: Rhabdomyosarcoma: information and treatment
Summary: 
Followup-To: 
Organization: WINCO
Keywords: 

In article <1992Apr13.164650.1401@brtph560.bnr.ca> candee@brtph5.bnr.ca (Candee Ellis P885) writes:
>
>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.
>

See "Everyone's Guide to Cancer Therapy" by Dollinger, Rosenbaum, and
Cable, Somerville House Books (Andrews and McNeel), 1991, ($19.95 in
paperback), p. 304, for a summary.

russ@pmafire.inel.gov (208-526-3360, day)