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I would consult with an oncologist at a well known cancer center. They will most likely have lymph node ultra sounds and ct scan or mri scan follow ups. This disease can come back after clear margins. Mine did. 

I would consult with an oncologist at a well known cancer center. They will most likely have lymph node ultra sounds and ct scan or mri scan follow ups. This disease can come back after clear margins. Mine did. 

Hi Sue I started the Ipi /temodar tial about four weeks ago. You posted 8-1 Still neediany feedback?

Hey Sam I don't want to influence your decsion but we all need some facts. So here are my facts as I know them.. I was diagnosed with mucosal melenoma in June 2009 in my rectum. I believe I had the tumor at least six months prior to surgery. I had two surgeries in June and July. The first was to clean margins but did the second just to be sure and was to clean margins. My oncologist at Mayo Clinic Jacksonville recommended interferon and radiation as mucosal melenomas are rare and aggressive. I went to Moffitt Cancer Center in Tampa Florida for a second opinion. They too recommended radiation for five weeks. I opted for the radiation and did not chose to do the interferon. The melenoma to the disbelief of my radiologist grew back through the radiation . I had a small recurring tumor in the same spot. It was removed again to clear margins in January 2010. I was put on cat or ct scans every 3 months. I had a clear scan in March but my June scan showed four spots less than a cm three in my lungs. It was recommended at the moffitt center that I be put in the hospital to under go a bio chemical cocktail four drugs– interferon interlukin 2 carboplastin and taxol. I went to MD Anderson in Houston and consulted with a specialist at Pittsburg medical center. There was a trial for ipi and temodar at md anderson so I decide to try that experimental drug ipi and temodar(fda approved). Everyone's body reacts differently to drugs and radiation. Unfortunately my tumors grew and I was removed from the trial. I am now on Carboplastin Paxitaxol And Avaston. I will get scanned again in 5 weeks .I hope it will show the tumors at the very least not growing. I would say due to the aggressive nature of this cancer you cannot be passive. There are mutations that if you are positive for that there are drugs that have good track records. The c-kit mutation has a drug called gleevic that has a high success record. Also the BRAF mutation has the new experimental drug.mentioned in the media ..I strongly recommend all my doctors at MD anderson Houston, Moffitt Cancer center Tampa and  Mayo Clinic Jacksonville and would suggest you meet with all or some. You can never have enough Doctors as some facilties have access to treatments the others do not. They have all coordinated unselfishly to try and help me. You need to be a patient of them so you can move quickly should tumors ever show up again. As I said decsions are the patients but the doctors will guide you. I have had many melenoma people be kind with their time and experiences. I am trying to pay this forward. I would be glad to dicuss this further by phone if you desire.

Hey Sam I don't want to influence your decsion but we all need some facts. So here are my facts as I know them.. I was diagnosed with mucosal melenoma in June 2009 in my rectum. I believe I had the tumor at least six months prior to surgery. I had two surgeries in June and July. The first was to clean margins but did the second just to be sure and was to clean margins. My oncologist at Mayo Clinic Jacksonville recommended interferon and radiation as mucosal melenomas are rare and aggressive. I went to Moffitt Cancer Center in Tampa Florida for a second opinion. They too recommended radiation for five weeks. I opted for the radiation and did not chose to do the interferon. The melenoma to the disbelief of my radiologist grew back through the radiation . I had a small recurring tumor in the same spot. It was removed again to clear margins in January 2010. I was put on cat or ct scans every 3 months. I had a clear scan in March but my June scan showed four spots less than a cm three in my lungs. It was recommended at the moffitt center that I be put in the hospital to under go a bio chemical cocktail four drugs– interferon interlukin 2 carboplastin and taxol. I went to MD Anderson in Houston and consulted with a specialist at Pittsburg medical center. There was a trial for ipi and temodar at md anderson so I decide to try that experimental drug ipi and temodar(fda approved). Everyone's body reacts differently to drugs and radiation. Unfortunately my tumors grew and I was removed from the trial. I am now on Carboplastin Paxitaxol And Avaston. I will get scanned again in 5 weeks .I hope it will show the tumors at the very least not growing. I would say due to the aggressive nature of this cancer you cannot be passive. There are mutations that if you are positive for that there are drugs that have good track records. The c-kit mutation has a drug called gleevic that has a high success record. Also the BRAF mutation has the new experimental drug.mentioned in the media ..I strongly recommend all my doctors at MD anderson Houston, Moffitt Cancer center Tampa and  Mayo Clinic Jacksonville and would suggest you meet with all or some. You can never have enough Doctors as some facilties have access to treatments the others do not. They have all coordinated unselfishly to try and help me. You need to be a patient of them so you can move quickly should tumors ever show up again. As I said decsions are the patients but the doctors will guide you. I have had many melenoma people be kind with their time and experiences. I am trying to pay this forward. I would be glad to dicuss this further by phone if you desire.

I was diagnosed with Mucosal melanoma in July of 2009. I am currently on Pacitaxol Carboplastin and Avastin.I have my next scan in 5 weeks and hope to hold it back. What Chemo drugs held it back for you? Do you have a postive mutation like braf  or did they just let you in the trial for XL 184?

I was diagnosed with Mucosal melanoma in July of 2009. I am currently on Pacitaxol Carboplastin and Avastin.I have my next scan in 5 weeks and hope to hold it back. What Chemo drugs held it back for you? Do you have a postive mutation like braf  or did they just let you in the trial for XL 184?