More info....

http://www.oncologytube.com/index.php?page=videos&section=view&vid_id=100400

Brent has been a busy bee as ever....Yesterday he spoke with docs in charge of melanoma research at Emory (in Atlanta) and at UAB (in Birmingham). Today he reached Dr. Weber in Tampa.

The first two were very nice, listened to my history, discussed general issues with Brent. Both advised that there were no current recommended adjunctive therapies and no trials that they were aware of for which I would fit. They did let him know about Dr. Weber in Tampa and another Doc in Knoxville and gave him info on how to reach them. The Doc from UAB said that he had taken part in a trial that had used only the high dose month of interferon and the trial had been discontinued because the patients had fared so poorly. He added that as more time passes, the more they realize that interferon does very little, if any, good. Both were very positive about the showing that Ipilimumab is demonstrating in its trials. The only sort of strange thing was is that they said it would be available in March rather than the Dec date that Brent had found. Both noted that I had rather "indolent" disease...basically since I'm still here. They both offered their assistance should Brent wish to call them later.

In speaking with Dr. Weber today, it appears that I fit a trial he is doing in Tampa. It is with another immune stimulator (monoclonal antibodies) combined with a vaccine. He thinks highly of ipilimumab, but thinks this drug combo is one step ahead of that. The people in the trial have to be Stage IV with all tumors resected. He wants to look at my MRI to make sure that he agrees that I have no tumor in my head. He also needed to know that I have the particular antigen that his drug and vaccine are geared to work on. Brent looked at my path stains and it appears that I have it. He says that the immune response side effects that are present with the ipilimumab (diarrhea, rash, thyroiditis, and changes in the pituitary....which he says he can take care of with steroids and go away when off the drug) are even less in this drug (anti-PD-1 human monoclonal antibody MDX-1106). The regimen would be IV infusion of the drug with a shot of the vaccine once a week on weeks 1, 3, 5, 7, 9, and 11. That cycle would be repeated every 12 weeks for 2 courses in the absence of disease progression or unacceptable toxicity. Patients may continue to recieve anti-PD-1 infusions every 12 weeks for up to 2 years in absence of same. So.....I guess we will find out more about that. My main question would be....If you think so highly of ipi, then why should I do this drug now, instead of waiting for ipi to become available?

The link at the top should get you to a video of Dr. Weber talking about a drug like ipi whose trials were stopped, a lot about ipi and its results, and some about anti-PD-1, if you're interested.

What to do???????????????? Love to all - c