My 37 year old wife (and mother of a 3 and 5 yr. old) has SNEC (Sino-nasal
neuroendocrine carcinoma), a rare, and aggressive cancer of the sinuses. It
was already 5 cm and had already penetrated the frontal lobes of her brain
by the time it was detected 10/02, however, max dosage Cisplatin/Etopocide
and 6000 rad IMRT radiation resulted in complete remission. Just last month,
it recurred, and is rapidly growing between her eyes, already pushing on
them (the lumps are very visible externally). It has also metasticised to
her lymph nodes. 2nd regimen of Chemo is not working, radiation is not
possible (tumor too large for Gamma Knife), and surgery is very complex (she
has already had one 7 hr. skull base/neurosurgery), and, at best, would
result in loss of an eye without removing all cancer.
Of the various alternatives researched, PDT (PhotoDynamic Therapy) using
focused light on photosynthesizing agents is promising but limited. CLT
(CytoLuminescent Therapy) is a new, next generation of PDT with less
limitations (re: depth of tissue it can pentrate) and is offered in limited
locations in Europe and Australia. Many positive studies published in New
England Journal of Medicine, but the technology is new, and I am looking for
anyone to share firsthand knowledge that they may have.
Thanks, I am a new poster, and looking forward to any shared insights.