A lesson in spots– and GVAX Cycle 4!

Our trip to Baltimore yesterday was not routine because we threw in an appointment with Dr. Tim Wang, director of the Cutaneous Surgery & Oncology Unit at Johns Hopkins. What I learned was different from what I expected.

Robert’s oncologist, Dr. Evan Lipson, referred us to Dr. Wang in a previous visit when I complained that a dermatologist here in D.C. wouldn’t show me what he was seeing on Robert’s body during an exam. I understand that was an unusual request, but I want to know what to look for. Dr. Wang has a reputation for helping people learn about melanoma, so we decided to consult with him for one of Robert’s quarterly skin check-ups.

Dr. Wang might have chuckled when he read Robert’s response on the pre-appointment form to questions about why we were there. The form asked about the location on the patient’s body of any troublesome spots, and also how long they had been there. A bit frustrated, perhaps, Robert muttered, “they’ve got to be kidding,” before writing “Everywhere” and “Forever.” That about sums it up ...

It also could give you an indication of how frustrated I have been trying to apply the ABCDE principles when I look at Robert’s spots, as suggested by a National Cancer Institute nurse earlier this month. How long do they think I could get him to lie still? Let someone else do that ...

But that left me with, basically, nothing to go on, so I was looking forward to taking lessons from Dr. Wang. Here’s what I learned.

First, check out the local area where the primary melanoma was removed from. This is important because a melanoma that’s been resected is most likely to come back in that same area. First, Dr. Wang said, not only should I look at the graft but also run my finger over it. Look for bumps or lumps particularly along the margins of the graft and just outside the graft area. These don’t need to be colored – they could appear as flesh-colored bumps.

Next, we should check Robert’s lymph nodes regularly for enlarged nodes, the size of a marble or golf ball. There are still plenty of nodes left in his neck, and I will notice if any of them are enlarged. I’ll leave digging in his armpits and groins for him to do ...

The third task is the one I had puzzled over – looking for another melanoma to pop up somewhere else on his body. Dr. Wang said about 5% of melanoma patients have a second primary, which might present as any other cutaneous melanoma – a dark, asymmetrical spot with uneven edges and uneven color. But how to find one? On people, like Robert, with lots of sun damage and freckles, “you would go crazy if you did the ABCD thing for all of them,” he said.

This is particularly true if you try to start out focusing on individual spots. The secret is, don’t stand too close! I pointed to one particular spot on Robert’s back and another on his forehead that appeared to be darker than the others. Dr. Wang suggested that I stand back and look again. I could still see those spots, but now I also noticed others that were just as dark.

A worrisome spot (“spooky,” as Dr. Wang put it) would be bigger than a freckle. It would be not only dark, but also rough and uneven, possibly bleeding. I think size is another factor – they generally are at least 6mm in diameter – though they have to start somewhere and perhaps just go unnoticed when they are smaller than ¼ inch. That’s why the docs recommend that you look once a month and take note of any spots that are evolving, or growing.

It was hard to learn what to look for when Dr. Wang didn’t see anything. But he did point out a spot on Robert’s lower leg, just above the ankle, where two freckles seem to have blended together. Seen together, they are not symmetrical and are bigger than the others. We’ll watch them, but he was pretty sure they were just that – two freckles too close to separate on sight.

GVAX – Cycle 4

We are old hats now at getting the GVAX injections. The blood is drawn first-thing – lots of it, but Patient Robert lies on a gurney now and Nurse Robert draws the blood slowly so it won’t come as such a shock to the patient’s system. While the regular lab levels are being measured to make sure there are no indications of infection or illness that would preclude continuing with the vaccine, we see Dr. Lipson and talk about Robert’s reaction to the injections while he does the physical exam and palpates lymph nodes.

Cycle 3 seems to have caused less of a reaction, and Dr. Lipson said there is no set pattern with it – some patients continue to have more severe swelling and itching, but others don’t. Robert mentioned that he believes there has been one point of consistency in his reactions – a “raging heartburn” that comes on even before we get onto I-95 to drive home. Dr. Lipson and Susan, the study nurse, seemed surprised – as though this was a new finding, if it is related. But then again, we don’t know – and probably won’t – whether it is related to the vaccine. It seems to Robert as though it’s related, and indeed it happened again yesterday, although the reaction was a bit delayed this time – just long enough for us to go to Bertha’s and eat some mussels.

Perhaps it is related to the “garlic breath,” which I found to be much more objectionable yesterday than after the first three cycles. That reaction was much more noticeable to me this time than in the past. It doesn’t seem to bother Robert at all.

Although the swelling was there this time, it seemed to be less bothersome. Robert did not complain of itching yesterday or today.

So, tomorrow morning we are off to Baltimore early for the post-Cycle 4 biopsy. Feel free to call or email if you have questions, but please don’t expect an answer until Friday.