Mucosal Melanoma Of The Anal Sphincter

I understand mucosal melanoma is very rare and would like to hook up with others out there who have been dIgnosed with mucosal melanoma in any area of the body. Questions for sharing and discussion: Where was the melanoma? How was it discovered? How far along was it? Immediate action taken? Surgery? Sentinal node removal? Interleuken 2/ Interferon/ GM-CSF? What has worked especially well for you? Any particular books you would recommend? I would like to have those patients living with mucosal melanoma support each other, help with information, share what works, what doesn't.

Hi!  I'm glad you started this chain.  My mother, age 67, was diagnosed 4 months ago with mucosal melanoma.  Primary is in the rectum - inoperable.  Mets to the liver.  Had to get a colostomy.  She was on AZD6244 for 6 weeks and tolerated it fine.  Unfortunately, it didn't do anything for her.  Now we are testing her tissue sample to determine whether she is a candidate to take Gleevec.  Where are you in your course of treatment?

my sister was diagnosed with rectal melanoma in April 2006. I would like to talk to you and share information. Please let me know if you get this email. I just typed a very long email and then lost it, so I will give you details when I hear back from you. Take care, Cathbean

My brother was diagnosed last August 2007 with anorectal melanoma and he had surgery in November to removed the mucosal pocket from his anal area and then he had 9 weeks of daily radiation treatments. The doctors at Duke chose not to do chemotherapy. In February of 2008 they did a PET and the cancer had metastasized into his liver on both sides and he had a small tumor on his back. They did more radiation for the tumor on his back and he had a course of Interferon and chemo pills for the liver. After only 5 weeks he had to be pulled off the Interferon because he was experiencing major changes in his vision which was a side effect which could have led to blindness. His doctors at Duke basically then told him his only alternative left was to go in the hospital and have Interleukin 2 treatments because at that point the tumors in his liver had grown so large that he was no longer a candidate for liver resection. My brother did not want to face the IL-2 treatment so he sought out other choices from the doctors at UNC Memorial in Chapel Hill. On Friday, June 6th he underwent a new procedure called chemoemolization where a cathether is placed up through the groin artery and into the liver and a massive dose of chemo drugs are injected into one half of the liver. There were many possible side effects which he could have had from this. He had tremendous pain after the procedure for several days and when he left the hospital he was on three very large 100 mg pain patches of dilaudin. The biggest side effects he is having now are depression, emotional ups and downs with bouts of crying and some pain and sleepliness. But he is alive and still with us. He has alread beat the odds of what the doctors thought he would when he was diagnosed. They had told us this rare form of melanoma has a life expectancy of a year or less in most cases. So we are thankful for this.