(9) 16 Sep 2013 – The Experiment

Gordon on Lone Cone 937Climbing Lone Cone

I write from the third peak. I made it into a clinical trial, this one in San Antonio, Texas, of an anti-PD1 immunotherapy drug. Getting into it took scrambling. We had to stay on top of the process every day; even so, getting into the right trial (the one without a chemo arm) was a squeaker. As usual, Claudia’s help was indispensible. Cutting the story short, I got my first dose of the Merck drug MK-3475, aka lambrolizumab, on August 6. Three days later,  I felt a tumor on my shoulder start to shrink, and I had less pain in my buttock. Two weeks later, the tumor and the pain were both completely gone.

The MK-3475 molecule targets PD-1 receptors in T-cells. Its effect is to disable natural inhibition mechanisms,effectively taking the brakes off  the immune system. Unleashed, the T-cells attack cancer cells. The drug thus effectively enlists the body’s immune resources to destroy cancer.

At first I found it hard to believe what I was seeing. The lump on my shoulder just shrank and softened, as if melting away, over a week or so. My T-cells were doing the work, but without any of  the symptoms we usually have to endure in an immune response—no soreness, redness, swelling or pain.  It seemed almost magical—yet palpably, measurably, objectively real.  My wife could also see and feel the lump shrinking, and was convinced.

I’ve since been back to San Antonio for a second infusion, and heard my doctor’s opinion that the optimism I’d been feeling was warranted. All signs indicate that the drug is indeed working, although I won’t know for sure whether any tumors remain in my body until after another scan, scheduled for Nov. 4. “And what happens if it shows no cancer at all?” I wanted to know.

“We just keep going,” was the answer. Visits to San Antonio for infusions every three weeks, indefinitely—until I can no longer tolerate the drug. That is something that happens, sooner or later, to those who are helped by MK-3475. They develop symptoms of  ‘wasting’—fatigue accompanied by weight loss. This is presumed to be an auto-immune response caused by the over-active T-cells. There is no more cancer to attack, so they start in on healthy tissue. When the ‘wasting’ starts, patients are taken off MK-3475 and given steroids to calm the immune system. This reverses the ‘wasting’ process. So far, clinical experience suggests that patients keep their gains against cancer.

Every so often, when you’re part of a clinical trial (especially if it’s Phase 1), you’re reminded that it is, after all, a medical experiment. As long as patients can tolerate the drug, doctors continue administering it because they don’t know when it’s safe to stop. Better a treatable episode of ‘wasting’ than a recurrence of cancer. I agree with this thinking, and have no complaints. I`m glad to make this small contribution to medical science. It just underlines the fact of life I’ve noticed repeatedly since my cancer started, that the future is hard to predict.

I would have posted this news sooner, if the prospect of imminent death hadn’t already spun my life into a loop. My favourite cousin flew out of Vancouver airport this morning after a ten-day visit which, when she booked the flight, looked like it might be our last. As it turned out, we had an active and jolly time, even hiking an excessively vertical trail to the top of Lone Cone, a peak overlooking  Clayoquot Sound.  Now that everyone is getting used to the idea that I may be around for a while, my life needs to settle down into—I won’t say normalcy—a more productive pattern. My book has been more or less on hold since May. I want to get on with it. Lots of other things need attention too.

I don`t know what more needs to be said.  I think this drug has cured my melanoma. I could be wrong about that. But if there are no more Melanoma Journal posts for a long time, the likely explanation will be that there is nothing much to report—just more trips to San Antonio.

But maybe there is something more to say. Our lives are strange hybrids of what we strive for and what happens to us. We charge ahead on the path we carve out for ourselves, until something stops or diverts us. We never have as much control as we want; we operate in ignorance of facts that can make or break our most important projects; yet we are far from helpless. We experiment as we go, and sometimes find new ways to push back our limitations.

I’ve mentioned before that my diagnosis of melanoma last year did not keep me awake nights. As one gloomy event after another unfolded, my anxiety levels remained low. Claudia worried more than I did; and I worried more on her behalf than on my own. Death is not a problem so much for the one who dies as for the survivors. I can’t prove it, but I think my views about  persons—about what we are—helped my peace of mind. I did not fear that my unique stream of conscious experience would come to an abrupt end, because there is no such stream; my connections to my future self are of the same nature as my connections to other people. Others will continue to have experiences even if I no longer do; and their experiences will be no less valuable than mine. My attitude towards myself in the future is like my attitude towards other people whose lives I touch, whose futures depend, in part, upon my present actions, and who may pick up some of my ideas and memories as a result of ordinary communication. There is nothing more to the continuity of an individual life.

To become less anxious is to experience a change in one’s motivational state. When motivation directed towards oneself becomes less consuming, other-directed motivation can expand. Certainly, life is pleasanter without self-concerned fears and the egoistic baggage that goes along with it. When I think of myself in the third person, I not only sleep better, I also experience the present moment more intensely, not being distracted by personal regrets and worries. But that leaves an open question whether it is really agood idea to cultivate this change in myself. It’s an experiment after all, one still in progress.

Self-concern evolved  because it helped our ancestors survive. If I weaken my natural emotional concern for myself, do I risk losing motivation to take care of myself? That could get me into trouble. I did get into trouble with melanoma, and part of it was my own fault. It took me four weeks from noticing a pimple-like growth on my left arm until seeing my doctor. If I’d moved faster, I might have got to surgery before it grew to a perilous 8.0 mm. Breslow depth. The first surgery might have put an end to the problem.

But I honestly don’t think my slowness to run to the doctor was caused by my views on personal identity. At earlier times in my life, I had waited longer before having various lumps and bumps medically investigated (always at my wife’s insistence)—lumps and bumps that turned out to be nothing to worry about. I didn’t think this one would be any different. It’s a guy thing.

But since I was diagnosed with melanoma, it’s been different. I have prioritized taking care of this thing. I advocated for myself, and was actively involved in my own case management. (I must acknowledge once more that Claudia was just as actively involved.) I was never a passive patient, but informed myself about my condition and made decisions accordingly. With positive results, at least to this date. I think my self-care, since the diagnosis, has been fairly effective. If that’s so, then my attitude towards my future self was adequately motivating.

Actually, I think a third-person attitude towards oneself can be more effective than the first-person attitude in rallying action against a serious threat, because the third-person attitude doesn’t generate personal anxiety. Fear that lasts for weeks or months is debilitating. People burn out, to the point that they can no longer face the threatening reality and deal with it. I experienced this myself a few years back, when I struggled to keep a small business alive. Emotional distance helps us think more clearly. We notice this when we advise our friends about their problems.

Another reason to weaken self-concern is that doing so can bring you closer to other people. If you see your future self as just another person, you naturally engage with other people, and some of them—their social natures being aroused—are likely to reciprocate. You no longer feel that you have to bear the burden of your problems alone, and in fact you don’t have to, because they tend to become shared projects, which, with more resources behind them, have a better chance of success.  At least, that has been my experience in dealing with my health problem—and I’m grateful for the help and love that came my way, and continues to come.

Those are, of course, just interim results. The experiment is still at an early stage.

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5 Responses to “(9) 16 Sep 2013 – The Experiment”

  1. susan kahn says:

    A beautiful and insightful post, as always!

  2. Jenny Wren says:

    So happy for your good news, and a wonderful post. I have learned so much from your “experiment in progress”, and I am very happy to hear you are writing a book as well.

    I am especially interested in your observation that reducing your self-concern not only enhanced your ability to help others, but also your ability to accept help from others in return. That is so important. I believe that since our society values independence and self-reliance so highly, much needless suffering occurs because people do not seek help when they need it, or accept help when it is offered.

    I’ll go further and offer the point of view that your experience provides a potential solution to the “no atheists in foxholes” problem. No matter how difficult the circumstances, relinquishing self-concern provides a way to overcome the difficulty, by preventing emotional shut-down, allowing better decision-making, and more effective social cohesion.

  3. Thank you both for your comments! It`s immensely encouraging to get a response that shows someone understands what I`m talking about. (Understanding is much more important than agreement, by the way. I like objections, because they help me improve.)

    My fight against melanoma is the closest I’ve come to being shot at in a foxhole. I’m sure the experience is different, but I can say that it hasn’t tempted me to give up atheism. When my GP offered to pray for me, I said I’d prefer him to think for me. (He has been very helpful, although he frets too much.)

  4. Jenny Wren says:

    Gordon, If you haven’t seen this, check it out. A very nice graphic that tells the PD-1 story very well.


  5. Einar says:

    Your web site turned up on a google search, and it is an interesting read!
    The youtube video presentation for SAND 2012 was very accessible, easy to grasp. The topics you cover are too big to be contained indoors, so more videos outdoors with cats and trees and mountains in the background! 🙂 I think you have what it takes to use the video format to convey in-depth theoretical content.
    Best wishes for the melanoma recovery!

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