As we near the time for our visit with Dr. Sharfman at Johns Hopkins next Monday afternoon, we are trying to clarify our thoughts and figure out what questions and information gaps we need to address before decision-time. I hope writing this blog post will help me do some of that on my own. I’ll start with a synopsis.

The pathology and radiology reports indicate that Robert has no more cancer in his body. Specifically:

·        The tissue removed in the wide local excision (WLE) included sufficient clear margins, and that gives us comfort that the entire malignant melanoma was removed.

·        Biopsies of the sentinel lymph nodes removed on June 18 found no evidence that the cancer had spread through the lymphatic system before it was removed.

·        The PET/CT scan performed in May found no evidence of cancer elsewhere.

Essentially, this is the best condition we could have hoped for: “no evidence of disease” (NED). In most cases, when dealing with a completely removed primary melanoma, the doctors recommend no treatment other than following up to look for any sign of recurrence (“watchful waiting”). This would include quarterly examinations using a Wood’s lamp, an ultraviolet light that dermatologists use to look for discolorations that go along with various skin diseases, for the first year and possibly reduced in frequency later on. In addition, they will want to do more PET/CT scans, possibly twice a year reducing to annually.

According to the National Cancer Institute, watchful waiting is a course generally used when the condition is thought to progress slowly or when the risks of treatment are greater than the possible benefits. If this was a case of primary cutaneous melanoma at Stage 0 or Stage I (small lesions on the skin, completely removed, no evidence of spread inside the body) that would be an easy call.

Our concern comes from the size of the cyst that was removed in early May from under the skin on Robert’s scalp. It was measured at 9.5mm in the first pathology report from Boston University. Any melanoma thicker than 2mm is considered to have gone beyond Stage I. Generally, tumors greater than 4mm with no ulceration are staged at IIB if there is no evidence of metastasis (T4aN0M0 = T4 meaning the tumor is >4mm thick, a indicating no ulceration, N0 meaning no cancer in the nodes, M0 meaning no signs of cancer elsewhere in the body). Bigger lesions are considered to have a greater chance of recurring.

Chemotherapy with interferon alfa-2 often is recommended for Stage IIB melanoma. Although it’s a nasty drug and therefore sometimes ruled out as a therapy for older patients, Robert’s physical condition is excellent and the doctors believe his body could take it. There is some dispute, however, about how much good it does, even in patients with high-risk conditions. Studies have shown that a low dose of interferon alfa-2a is effective only in delaying relapse, but this treatment apparently doesn’t extend overall survival. High doses of interferon alfa-2b, on the other hand, not only delay relapse but also prolong survival.

I won’t go into the side effects here, but suffice it to say we would like to skip interferon unless there’s a good reason to take it. We have been looking for alternatives (and we’re grateful for the many researchers who are, too). We’ve found a few clinical trials for promising new chemotherapy drugs, including some that seem not to be as harsh as interferon alfa-2. However, these trials tend to be randomized – meaning we might not know which treatment is being administered and wouldn’t have a choice. This doesn’t seem like the best route to take.

In addition, there are trials for vaccines that are thought to boost the immune system to fight recurrence – including one trial being conducted at Hopkins. We will talk with Dr. Sharfman about this when we meet with him next week. Some patients in this trial are being administered another chemotherapy drug along with the vaccine. We might be able to sign up for the trial and then pull out if Robert ends up in the group that gets the additional drug.

Our main question is: does the size of Robert’s lesion warrant treatment with nasty chemo drugs, with or without the vaccine?

We took one step toward trying to answer that question last Wednesday during a phone conversation with Dr. Suraj Venna, the head of the Melanoma Center at Washington Hospital Center. He called us after reviewing Robert's case at a meeting with other members of the melanoma team, prompted by a call from our cousin Ilona. (For those who don't know her, Ilona is a pediatric dermatologist at UCSF and worked with Dr. Venna there before he came to D.C. She's married to my cousin Mark Jacobson.) My take-away from the conversation with Dr. Venna was that he believes the risk of chemo drugs is not warranted in Robert’s case, considering that Robert is NED at this point.

Dr. Venna also told us one result of the meeting with his team is that Dr. Jang, the oncologist, has sent Robert's case to Stanford University for review by Dr. Susan Swetter, one of the top researchers focusing on “primary dermal melanoma” (PDM). This is a type of melanoma that has been identified in a small number of patients most of whom were originally diagnosed with a cyst and had no sign of melanoma on the skin. One distinguishing factor for this group of patients appears to be that they have a better long-term survival rate than patients with metastatic melanoma.

There are only a few articles on PDM available for free on the internet, and I have read them. I don’t claim to understand everything they say, and there may be more recent articles reporting on newer findings that I don’t have access to. I don’t expect Dr. Sharfman or Dr. Venna to be able to tell us with any degree of certainty that this is what Robert had – they have both told us we may never know for sure. But we plan to wait until we hear what Dr. Swetter has to say before making any decisions about what to do – or not to do – next.

We’ll keep you posted!