One patient with glioblastoma still alive nine years later
by nbandsb on Wed Jun 18, 2008 12:00 AM
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.
I wanted to write to this message board to see if there are any others out there who have family members who either have this kind of melanoma (anorectal) presently, or have lost family members to this kind of cancer? The doctors at Duke told us they only treat 30 cases a year of this kind of melanoma so there is not a lot of information to be found on the various types of treatments. If you know anyone or have had a family member who had this - please feel free to respond. We appreciate all the input we can get.
by whynot on Tue Jun 24, 2008 12:00 AM
I'm sorry your brother and your family are going through this.
I have recently been doing some reading about mucosal melanoma, and I believe your brother's is just one location of this type. There was a recent report of successful treatment with Gleevec in one or two people, and there is reason to be hopeful that a sizable minority will have a favorable response. Gleevec has helped people with GIST go into lengthy remission, and anywhere from 21-40% of people with mucosal melanoma show the same KIT gene mutation. If you do an internet search on Gleevec and melanoma, or melanoma and KIT, you should be able to turn some of this up. It's very new.
Best wishes to you.
by Stefhef on Thu Jun 26, 2008 12:00 AM
by nbandsb on Tue Mar 03, 2009 12:00 AM
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