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June 14, 2013 at 1:07 pm #21375Lana922Participant
My son (29) is currently Stage IV, no known primary, with clear scans after recent Cyberknife to tiny brain met (couple of weeks ago), removal of lung met in March and total neck resection April 2012 that was followed with Interferon and Radiation. Swollen neck lymph node is where it first appeared. He does not have the BRAF mutation.
He’s scheduled to begin ipi mid-July, but given the new trial results publicized at ASCO about IPI/Yervoy used in combination with Nivolumab that show concurrent treatment has better results than sequential treatment, I wonder whether its worth it to go with the ipi alone or wait to try and get into a combo-trial.
There was also data on a GM-CSF ipi combination that seemed promising.
It seems that the combo drug trials require that there be measurable tumors present for participation (which thankfully, he doesn’t have right now!).
Thoughts, advice, experience all welcome!
LanaJune 14, 2013 at 1:58 pm #61352BNP68Participant
I’m in the same Stage IV NED boat. My research for NED clinical trials did not turn up a whole lot of great options. There have been open windows for PD-1 and TIL for NED patients in the past but to my knowledge there are not any trials with either of these drugs right now open to NED patients. Using clinicaltrials.gov I found about a dozen trials that I would have been eligible for and narrowed it down to a couple. One was a vaccine trial at UVA and the other was a mage vaccine trial at Moffitt. I visited both sites and have decided to pursue the Mage trial at Moffitt. Early results of the Mage trial seem pretty favorable. My resected melanoma is currently being sent off for testing to see if it is mage positive which is a requirement for the mage vaccine trial.
I’m surprised that your son has been offered IPI. Others on here have said it is available for Stage IV NED but everytime I ask the question to my providers they say it is not available. Would I choose IPI now, Mage, or wait for a possible combo treatment. That’s a tough question but IMHO I don’t think I would wait for a combo. Unfortunately the likelihood of recurrence with stage IV NED is just to high. For me personally I feel like I need to take every shot at MEL I can why I still can. You never know, MAGE or IPI could be my silverbullet.
BrianJune 14, 2013 at 2:56 pm #61353Lana922Participant
Thank you for your response! MAGE is not something I’ve heard of, but we’ll certainly do some investigation!
It’s my understanding that ipi has been approved for Stage IV NED….I wonder if you might be running into trouble with your health coverage approving it?
Best of luck Brian (luck does seem to be a key factor in the melanoma fight!)
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