Hello out there --
Is there anyone out there who has been diagnosed with desmoplastic neurotropic spindle cell melanoma? My mother was diagnosed with this rare form of melanoma in 2006 with a large, very benign-looking growth on her nose. She was originally told the biopsy results showed it was benign. However, further testing (I guess the usual protocol for certain skin growths?) revealed that it was anything but even if it LOOKED totally benign. She had the tumor removed along with 70 lymph nodes in her neck, five of which were diseased. So she was in stage 3. Three months after the surgery, she had a recurrence, again on her nose. The cancer also appeared in her parotid gland. She had more surgery (this past July) to remove the recurrent nose growth and also had a partial parotidectomy....She recently began immunotherapy -- leukine -- in the hopes of slowing down this monster.
Since it's so rare (about 4% of humans on the planet have ever been diagnosed with it I believe) and although she is being treated as if she has the usual, everyday melanoma, it would help my mom and my family to learn as much as we can about this form or hear from anyone who has it. We know that it has a bad rap. But we've also read that if it spreads, it's known to do so locally or regionally which gives us hope. Of course, it's hard to really know when it comes to cancer and melanoma but, we'd very much like to hear from anyone who has this form or who can offer some info....
She just finished her first round of leukine -- two weeks on -- and she's now in the two weeks off period. She's doing very well thus far.
Thank you very much.
Tulip