Appologies if this post comes through twice. It didn't seem to post correctly
yesterday.
I am posting this in the hope of finding additional information on treatment
options for skeletal cystic angiomatosis. I am posting to a number of groups
which may have readers with at least peripheral knowledge of the disease, or who
might work with someone with some experience with it. We have already found
what is available through Medline searches for the name of this disorder, and
there isn't much. We are looking for a place where there is actual experience
in treating or managing this extraordinarily rare condition.
My sister (age 40) has been diagnosed with skeletal cystic angiomatosis. She
has an extremely large hemanioma in her upper left arm and shoulder (in the
bone), and a large number of smaller such sites (50-100) in such places as the
spine, skull, scapula, pelvis, etc., but not in the extremities. None of these
- including the very large lesion in the arm - were visible in a bone scan taken
about 10 years ago for some knee-hip problems, although it is apparently hard to
be sure the spine was clear at that point. She has had biopsies, bone scans,
x-rays, opinions from multiple doctors in multiple locations (UCLA, UCSF,
Stanford, Mayo) etc., and apparently the pathology does not appear to be
malignant (nor does the location of the multiple sites fit the normal pattern of
malignant disease). There does not appear to be visceral involvement. She had
surgery about 5 years ago for the arm, which temporarily seemed to inhibit the
growth of the tumor, but it seems to be active again. Additional possibly
relevant information: she came back from a visit to Mexico 15 years ago with a
terrible infection, and then had what seemed like a chronic infection for some
years which seems to have been cured by a tonsillectomy a number of years ago.
During this period of chronic illness (fatigue, mostly), she developed
rheumatological problems in the tendons of her hands, and now notes that when
her arm flares, so do the hands. The rheumatological problems do not seem to be
arthritis.
She has had a course of radiation therapy on a couple of the worst regions
coupled with alpha-interferon therapy (which may have been a bad idea), and,
although it is too early to be sure, may be seeing some improvement in those
irradiated sites. However, one cannot irradiate the whole body. Does any one
know of any other similar such patients who have not already been published, who
worked with them, and whether any systemic therapies had positive results? Or
any other information which might be relevant?
You can email me directly, or post to this newsgroup if you think the
information would be of interest to the readers of the group.
Thank you for any information you may have.
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Ellen M. Wijsman Express mail address:
Research Professor 1914 N 34th St., suite 209
Div. of Medical Genetics and Seattle, WA 98103
Dept. Biostatistics (Note: do not mention the
BOX 357720, University of Washington Univ. of Washington, and
Seattle, WA 98195-7720 use this address only for
phone: (206) 543-8987 express mail)
fax: (206) 616-1973 email: wijsman at alz.statgen.washington.edu
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