My brain trust

Back in the day, we published dramatic images of brain pathology all the time in Diagnostic Imaging, the magazine I edited for many years in San Francisco. The review articles that appeared and the images that accompanied them were educational, providing our radiologist readers with examples of how MRI and other advanced imaging technologies were being applied in clinical practice.

I got an education of my own yesterday when I saw for the first time the MRI data set of my brain tumor from Aug. 5, the day of my neurosurgery. Ellen and I were having a consultation with a radiation oncologist at Providence and he wanted to convince me that aggressive radiation therapy should be part of my post-op care. Believe me when I say that seeing scans of your own brain with what looks like a thunderegg nesting inside it is a sobering experience. I had to shake my head in amazement at its horrible beauty. The tumor was larger than I had believed it to be—not 3 by 4 but rather 4 by 5 cm in size—and was attached to the dura mater (Latin for “tough mother”!). That, it turns out, is another complicating factor. Had we published in DI an image of my brain MRI as a case study, it would undoubtedly have impressed my readers.

My visit with Dr. Bader, the radiation oncologist, was the first of two appointments we had in Portland. I also met with Dr. Curti, the medical oncologist I’ve been seeing sporadically for almost four years. Now that I’m three weeks past surgery, it’s time to make decisions about what happens next. I’m still in recovery mode from having the brain tumor removed and have been told I will be for many weeks to come. The dizziness and partial deafness persist, but I am otherwise in good health with only one small active metastasis: a lymph node in my right armpit. It’s the right time to move forward with formulating a plan aimed at taking the best shot possible at ridding myself permanently of melanoma. The odds remain pretty long of achieving that outcome but they’re not prohibitive. What we learned yesterday from the docs is helping us decide how to proceed.

Part of what gives me hope that my care will be both coordinated and optimized is that my docs actually communicate among themselves. This has not always been the case in the past, so the fact that Dr. Bader actually spoke with Dr. Curti by telephone between our appointments is worth noting. By the time Dr.Curti sat down with us in the early afternoon he had formulated three options for how we might proceed that integrated the radiation oncology piece. This is what good patient care is supposed to look like and I’m impressed by how the Providence system appears to make it a priority.

In a nutshell, the option toward which we’re gravitating calls for full brain radiation to treat the area in which melanoma is most likely to recur combined with systemic (whole body) treatment with Yervoy, the new immunotherapy drug designed specifically for stage IV melanoma. Whole brain radiation is pretty harsh with some serious side-effects, but knocks back the chances of the melanoma recurring in the brain to about 15 to 20% within a year. Without radiation treatment, the odds of recurrence stand at about 75%. Possible complications include some loss of vision, short-term memory problems and possibly recurrent headaches. I won’t pretend that these side-effects don’t intimidate me. I haven’t fully grasped their likelihood or severity, but I do understand that they would likely change my life dramatically. Anything that messes with memory goes to the core of who I am. It’s a steep price to pay for a gamble on extending my life. I’ve only begun to process what this means.

As for Yervoy, I’m under the impression that its side-effects can be managed fairly well. These include disturbances to the skin (bad rashes), the GI tract and the endocrine system. It's a cancer drug, so it needs to be reckoned with. In the 18 or so months since it was approved for clinical use, clinicians have found that its success in patients with brain mets corresponds roughly with those in the rest of the body. This is great news since in general the brain is more difficult to treat because of the protection it’s afforded by the blood brain barrier. Many drugs used for melanoma in the body simply have little to no effect in the brain.

The not so great news is that the percentage of melanoma patients overall who respond to Yervoy is about 15%. It could be argued that my chances of responding are slightly higher because I’m younger and healthier than the average patient--a stud, in other words--but there’s no pretending that 15% isn’t an anemic figure. It’s a long shot that Yervoy will hit a knock-out punch to my melanoma. The more likely scenario is that it won’t, and I will then need to decide how to treat future presentations of the disease. I’ve already covered some of this ground with Dr. Curti and have an idea of what a back-up plan might look like, which would likely involve a clinical trial.

I believe that putting myself in a compromised position now so that something good might happen later—absorbing the double whammy of whole-body radiation and immunotherapy concurrently and praying for a positive outcome—is not irrational. There are documented cases of patients who have been down the same road I’m on today and who have been NED (no evidence of disease) for years. I believe this outcome is also possible for me and that it’s worth the price of the expected side-effects. I’m a realist about the unpredictability of melanoma but I also believe that whatever happens will be exactly within the will of God. In a way, I can’t lose no matter what happens. He is the great physician, and even the skilled care I’ve received so far through the Providence system is under his authority.

I expect to arrive at a decision on whether to proceed with the plan I’ve outlined here in the next day or so. Just writing this post has helped to clarify my thinking. We have some major insurance issues to settle first, as a standard course of treatment with Yervoy is billed at about $120,000. It's possible we'll be on the hook for a 20% co-pay. We could get started with things as soon as next week and I don’t have a good argument for why I should wait. I feel I’m at the threshold of a new and largely unknown part of my life, one that is in part medically driven but in which I will discover new things about myself, about others and about the nature of God. I have a sense of anticipation that’s hard to describe.

None of what's happened in recent weeks makes me happy, but I also have no fear about getting on with things. There’s something about truly believing I’m in the hollow of God’s hand that’s leaves me calm at the center of my being. I know that every breath I take, and every cancer cell in my body, is under His command.