Still N.E.D. - and an update on melanoma research

Our annual trips to Johns Hopkins for Robert’s participation in a follow-up study after his melanoma vaccine trial have become fairly routine. Leave about 7 a.m., check in by 8:30, CT scan and brain MRI, go see the blood-sucker, fit in lunch somewhere along the way, and then see Dr. Lipson early in the afternoon. Today we were home about 2:30. Easy up, easy back, and no news is good news. No evidence of disease.

Since there were no medical issues to discuss, we used our time with Dr. Lipson to get an update on melanoma research. He said the most prominent news is the ongoing developments in combination immune therapy, in which researchers are using antibodies that activate the immune system in various combinations. The research shows that the therapies are effective in a number of cancers, including kidney cancer, breast cancer, lung cancer and lymphoma as well as melanoma.

He said he wasn’t talking about the TIL therapy that’s gotten a lot of publicity over the last few years – in which they take T cells out of the body, modify them so that they fight melanoma cells, and then infuse them back into the body. I’m pretty sure that the TIL therapy we’ve heard a lot about is likely to be very expensive if they are able to bring it to market – so expensive that sometimes I think of it as the monster that could eat all our money someday.

The thing I find most exciting about the research that Dr. Lipson was talking about is that some of the researchers are working with medications that activate the immune system without actually taking the cells out of the body. We can hope that someday this will lead to effective therapies that can be commercialized without the prospect of either being available only to very wealthy patients or bankrupting those who can’t really afford them.

Another thing that excites me about the immune therapy research is that some of the studies include patients with Stage 3 disease – not just those with Stage 4 (metastatic) melanoma. The problem with studying therapies in patients with completely resected melanomas – those, like Robert, who have no evidence of disease – is that without a tumor to shrink, it’s hard to tell whether it’s working. As Dr. Lipson said, “in people who don’t have any evidence of disease, you wait … and you wait … and at some point you have to say, ‘Well, this did it.’ [Or not, as Robert noted.] Even if you have two groups of people with a thousand patients in each group and you wait five years, it’s a long time for a trial.”

Five years. Trial or no, it’s a long time to wait. And as Dr. Lipson explained, the risk tapers off during that time. It’s not as though you are fresh out of surgery, and you know that the risk of recurrence is highest in the first five years, and then you hit the five-year mark and it’s gone. So what does it mean to be at the half-way point – two and a half years with no evidence of disease? Will it be different in June, with the next set of scans, at the three-year mark?

I think not. Or if so, only to the extent that we’ve learned even better how to live with the uncertainty of being a melanoma survivor. Life goes on, and as long as it does we’ll continue to make the most of each day.

So, I’ll get back to that now!