Our trips to Johns Hopkins for the melanoma GVAX vaccine trial have almost become routine now that we are half-way through the trial – two injection visits done and two to go. But I did have another indication yesterday that our efforts to fight off another attack of this dreadful disease are only just beginning.

Thankfully, there was no drama associated with this visit. Our study nurse, Susan, had Robert lie down while the phlebotomy nurse drew all the blood samples – a procedure that made him pass out before the first injections on November 8. This time the precaution was unnecessary as this time there was no similar reaction. And, his blood pressure stayed within the “normal” range at about 135/84 – numbers that are high for Robert but nowhere near the dangerous level that they reached last month.

We met with Dr. Lipson next, and he did a very thorough exam – particularly, palpating every lymph node Robert has left and examining every inch of his skin. He asked about the history of a few “spots,” and that led me to bring up a subject that had been on my mind ever since our meeting with the dermatologist a few weeks ago. As I told Dr. Lipson, I had two concerns after that visit:

• First, I asked the dermatologist to show me any spots he was concerned about and help me learn how to recognize abnormalities of concern. As he carried out his exam, he pretty much ignored that request and froze a few spots without showing them to me first.
• Then, he said that Robert should have skin exams every four months. When I pointed out that Dr. Lipson had suggested a three-month frequency for the skin observations, the dermatologist repeated that HE felt four-month intervals are all that’s needed.

Dr. Lipson asked why I had the reaction I did – was it because of the advice the derm gave, or because of his manner in giving it? I think Dr. Lipson wanted me to consider an aspect of our health care choices that some people might not give much thought to: how much confidence would I have in this physician going forward? If I had confidence in this man’s skill as a dermatologist, would I be able to  “forgive and forget,” and be content if Robert continues under his care?

It’s a hard circumstance for me to be in. I certainly felt that this doctor gave Robert all the attention he needed during the November visit and thoroughly examined his skin. He communicated well with both of us even though he tacitly declined my request for a teaching session. All in all, I have no reason to doubt his skill and proficiency. Further, I have no reason to believe that there was any deficiency on this doctor’s part that caused Robert’s melanoma to go undiagnosed for so long – if there’s blame to place, it’s with Robert and me. Some of the top melanoma experts in this country have discussed Robert’s case with us in detail and have not indicated that they thought any signs of melanoma went unaddressed in his previous medical care. Melanoma sometimes presents like a cyst and sometimes doesn’t show up on the skin. I don’t believe there were indications of melanoma that any of Robert’s physicians did not recognize.

Dr. Lipson told us, as we already were aware, that Robert is a likely candidate for a recurrence of melanoma, having had the first one. He wasn’t talking about a recurrence at the same site, though he said that’s certainly possible – his concern was about a primary cutaneous melanoma cropping up at another site and growing very quickly. He explained, as has Dr. Sharfman on our two visits with him, that this period (in the first few years) is the one in which new primary sites are most likely to occur, and that’s why most melanoma specialists suggest skin screenings every three months during that period. And so, even if we have confidence in the dermatologist Robert’s been seeing – which we have no reason not to – the education I’m seeking is a good idea. He suggested that we see Dr. Tim Wang, a Hopkins dermatologist who has “made it his mission to educate patients” about what to look for on their own skin. Dr. Lipson said it might not be necessary to see Dr. Wang every three months – another dermatologist at Hopkins could take on that care if we decide not to go back to the guy we’ve been seeing.

It’s not my decision to make, and if Robert decides to continue with the current dermatologist I’ll figure out how to deal with that. But in any case, I do want the education from Dr. Wang and will try to get that arranged for our February dermatologist visit.

Cycle 2 injections

The second set of injections of the GVAX vaccine went pretty smoothly. Both Dr. Lipson and Susan told us that we should expect Robert to have a somewhat more vigorous reaction to these shots – more redness, swelling, and itching. Susan explained that now that the vaccine has been introduced into Robert’s body, his immune system should be on the look-out for it. When the newly injected cells meet up with cells in his immune system, they “have a party” and that causes swelling, itching, and redness. I hope it’s more akin to having a fight than a party – that’s what immune cells are supposed to do. But in any case, the reaction may be more intense this time.

Robert’s reaction when he received the injections was about the same as last month. At the sites on his thighs closer to the groin, he didn’t feel very much as the vaccine went in but did feel a little burning after a while. The injections at the lowest sites, closest to his knees, caused a burning sensation as they were given. This may be because there is more flesh on the upper thighs – just a guess, but it seems like a logical one. Susan explained to us last month that the syringes don’t have exactly the same amount of vaccine (what’s important is that the total amount injected be the same each month), and she uses the higher doses at the higher sites. As far as I can tell, this is all theoretical – the theory being that the fleshier upper-thigh area would be able to handle the higher doses. It seems to work out that way – the upper sites don’t burn when going in but get bigger reactions in the long run.

Susan also noticed the other reaction that repeated this time. After a few of the injections had been completed, she commented that Robert’s breath was beginning to smell like garlic. She explained that this is because of the dimethyl sulfoxide (DMSO) used as a preservative in making the vaccine. DMSO is made by oxidizing  dimethyl sulfide, a by-product of the wood-pulping process known as “krafting.” It’s been used as an industrial solvent for more than 60 years and in medical treatments for 50 years because it is known to penetrate the skin without damaging the tissue. When it is used as a vehicle for topical administration of anti-inflammatories, a known side effect is the development of a garlic taste in the patient’s mouth. Susan has noted “garlic breath” in other patients to whom she has administered the melanoma GVAX vaccine.

So far, that’s the most excitement we have to report for cycle 2. All in all, not a troublesome day.

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