5 Years N.E.D.!

One question I wanted to ask Dr. Evan Lipson today at Robert’s follow-up appointment at the new Sidney Kimmel Cancer Center at Sibley Hospital was, what does it mean for a melanoma patient to reach the five-year milestone after apparently successful resection of his cancer?

Looking back wistfully at the days when I had “general knowledge” about cancer with no personal connection, I still consider five years as a time to breathe a deep sigh of relief. I haven’t been sitting around worrying about the potential for Robert to have a recurrence, but one thing I’ve acknowledged since we passed the five-year mark on June 18 is that it won’t surprise me if it happens.

My question for Dr. Lipson was based on anecdotes I remember from a few years ago, when I was still monitoring the Melanoma Research Foundation’s Melanoma Patients Information Page regularly. I remember reading about several survivors whose cancer came back after seven to ten years with no evidence of disease (N.E.D.), and I wanted to know if melanoma is different from other kinds of cancer in this respect. Does it recur after five years more frequently than other cancers?

Dr. Lipson said yes, melanoma comes back after five years. However, he explained that five years is not necessarily considered a milestone for the chance of the cancer returning. Instead, it marks a point at which some follow-up testing, like xrays, CT scans and MRIs, is ordered less frequently in N.E.D. patients because the risk of continuing exposure to radiation outweighs the benefits of earlier diagnosis. That doesn’t mean the chance of a recurrence or finding a new lesion suddenly drops off; it continues to decline gradually, as it has been doing thus far.

A sigh of relief for Robert, perhaps – he will be glad not to drink “milkshakes” with isotopes in them as often and will have less fear of beginning to glow in the dark. One more six-month interval, which will bring him to the end of the five-year follow-up study since he completed the GVAX clinical trial at Hopkins after his melanoma was resected. Then the frequency of follow-up scans will most likely reduce to nine months, and eventually to one year.

Robert’s question for Dr. Lipson was about the research he participated in. He asked whether the new studies and treatments have eclipsed the research the Hopkins team and other melanoma specialists were doing with vaccines in N.E.D. patients five years ago. The answer: cancer vaccine research has advanced, including for therapies that can be given to patients with tumors that can’t be fully resected. For example, the Food and Drug Administration has approved Phase 3 research into the TVAX vaccine for treating brain and kidney cancers, and the research has entered Phase 2 for melanoma and seven other cancers.

One important thing about this research for melanoma patients is that this vaccine may have a longer-lasting effect than the recently approved adjuvant therapies, with fewer risks and side effects. With the vaccine therapy, some cells from the patient’s tumor are combined with an immunotherapy agent and injected back into the patient to generate an immune response against that tumor. Some of the cancer-fighting cells the body creates in the immune response are removed, made to reproduce in the lab and then infused back into the patient to immunize him/her against recurrence if the cancer has not been completely removed or has already metastasized.

Whew! Hope I got that all right! In case it’s still too complicated, I’ll give you this simpler explanation, the one that persuaded us not to go with a chemotherapy treatment when Robert enrolled in the GVAX trial in 2012. Chemotherapy is nasty; better to prevent recurrence with a vaccine if possible. Little risk from trying, so why not?

OK. I'm ready to move away from melanoma again for a few months. Let me know if you have questions - I'll try to answer!