Even if 3 ½ years is not a milestone generally marked in cancer survival, we came away from our visit with Dr. Evan Lipson at Johns Hopkins University Hospital yesterday with smiles and relief on two fronts. Not only does Robert continue to show no evidence of disease after his primary melanoma was removed in June 2012, but the report we heard on progress in melanoma research since his diagnosis is exciting and encouraging.

First, a brief recap (or feel free to skip to the first subhead below): Robert’s rather large, probably nodular melanoma lesion was discovered in April 2012 when his dermatologist removed what we thought was a cyst from his scalp. Because it didn’t show up on the skin looking like melanoma, the biopsy report said he had metastatic melanoma – at that time a condition with very poor prognosis (and still not what you want to hear today).

After surgery to remove the lesion from his scalp and a skin graft, consultations with melanoma experts at Hopkins and the University of Pennsylvania plus a report from scientists at Stanford University led us to the conclusion that Robert’s lesion was either primary dermal melanoma or nodular melanoma.

In either of those cases, the advice from all the melanoma specialists we consulted was the same: be vigilant in following up with the dermatologist and oncologist and, if you choose to, enroll in a clinical trial looking into melanoma vaccines designed to boost the immune system’s response to any melanoma cells floating around in the body undetected. So, that’s what we did.

(Click here if you want to read our melanoma story from the beginning.)

N.E.D. – all clear for now

In addition to the GVAX trial, Robert enrolled in a five-year follow-up study, and yesterday’s visit with Dr. Lipson in Baltimore was the annual check-up that’s part of that study. He had the scans here in D.C. at Sibley Hospital (where we see Dr. Lipson for the periodic check-ups recommended during the first five years after a melanoma lesion is resected), so we already knew the radiologists found no evidence of metastatic disease (N.E.D.). This visit included the blood work that confirmed everything else was ok.

Dr. Lipson stretched the time for follow-up scans to six months; we will see him next at Sibley in June. This is not unexpected for a patient who is 3+ years N.E.D., and I know if he suspected anything was amiss we would be scheduled to see him sooner. N.E.D. scan results are reassuring whenever we get them, and I am more at ease now than I was a year ago with a half-year interval between scans. All is well.

Update on melanoma research and treatment

On the way to Baltimore Robert read the paper that was published on the vaccine trial he participated in, but as it was written in med-speak he couldn’t understand it. So, after razzing Dr. Lipson (a former CNN producer) about forgetting how to write properly, we asked for a summary.

Dr. Lipson said the GVAX trial that Robert participated in produced mixed results. On the one hand, in looking at the tissues taken from study participants after the vaccinations, researchers saw increases in the types of cells that they hope would augment immune activity and decreases in the kinds of T cells that would hold back or block immune attacks. However, they didn’t find increases in cells that would indicate active anti-melanoma immune responses. This may be because the study cohort consisted of patients with resected melanoma – in other words, mostly patients who didn’t have active disease.

The next step for the research is probably a study that combines the GVAX vaccine with another agent to boost melanoma immunity. Possibilities are an anti-PD1 agent, like the one reportedly used to treat former President Jimmy Carter’s brain metastases, or T-VEC, a version of the herpes simplex virus that showed promise in studies released in the summer. We hope not to be part of the next trial … we don’t want to have to decide what the next treatment will be – but we’re glad the research continues at such a fast pace. Just in case.

As for the genetic testing that was done on tissue from Robert’s melanoma tumor, we found out – not surprisingly – that the tissue sample was insufficient to identify any of the genes that are known to be mutated in some melanoma patients. It might be possible to try again if there is enough tissue left from the tumor, but that may not be necessary – even if Robert has a recurrence. Scientific advances over the last few years make it possible now to find some gene mutations floating around in the blood stream, so they may be identified through a blood test. If there’s a need to do genetic testing on Robert’s melanoma (i.e., if it recurs), that would be the first thing to try.

But more important, advances in immunotherapy over the last few years have pushed therapies targeting specific genes to the back burner in melanoma treatment. The up-front therapies, like the anti-PD1 drugs approved in 2014 and the viral agents reported on this year, are at the forefront of melanoma research and treatment today.

N.E.D. – not necessarily “cancer-free”

Before signing off, I want to say a word about the publicity surrounding President Carter’s melanoma. Reports over the summer that metastatic melanoma was found in his liver and, later, had metastasized to the brain were upsetting, not only because I hope he will live longer and keep doing good work. I also was upset by the misinformation in the news reports.

Forgive me, journalist friends and colleagues, but there is a difference between “brain cancer” and “melanoma metastases in the brain.” This is not just splitting hairs – it’s important to people who need to keep up on melanoma research and treatment. Our continuous news cycle may not give journalists the luxury of reporting the details if they are murky or unclear, but neither does it insist that we report conflicting or questionable details immediately, even if someone else put them forward.

And as for Carter’s statement that he was “cancer-free” … I hope so, but I’m not sure enough to make that statement. Someone who presents with metastatic melanoma in two separate parts of the body may show no evidence of disease, but that doesn’t mean there are no micro-metastases floating around in his body.

I truly hope the treatment Carter took – one of the anti-PD1 therapies approved in 2014 – has knocked out any remaining melanoma in his system. And, I hope even more that we never find out that Robert is not “cancer-free.” But I’m not saying it. N.E.D. is good enough for me.