Beginner’s mind (AIM at Melanoma Patient Symposium @ NYU Cancer Center)

Reporting live from a spotless hospital restroom

I had a rough week. After waking up one too many mornings feeling like the previous night was spent with my lips to the exhaust pipe of an idling truck, and after downing my umpteenth pot of Throat Coat tea, I admitted that I was still feeling lousy and I didn’t know why. I went to see my regular doctor, had a negative strep test, and she put two and two together (as you do when your patient complains of “the same cold, every April!“). She informed me that I suffer from allergies. Of course, that went against every fiber of my being, because I’ve spent my entire life refusing to believe in allergies. They could happen to others, surely, but not to me. (My friend N agrees — she used to think they were “a folly of the rich.”) Did I mention the goopy eyes too? Wednesday night I was out for drinks with some friends, and when I went to the restroom I noticed the telltale goop in my eye. I don’t just get allergies, I get allergies WITH CONJUNCTIVITIS! I added a new bottle of eye drops to my collection. And, being who I am, which is a Very Special Cancer Person who takes meds that cause ocular toxicities, I could not just say Dayenu and have that be that. Nope, I had to follow up with my ophthalmologist, Dr. D. I had to see him Friday, and he was just back from vacation, and I had no appointment. After waiting two hours plus, I got to see him, and he confirmed it was not uveitis (which I had basically known all along, because uveitis feels like being stabbed right through the eye, and there isn’t much goopy stuff). (Dr. D also had this to say, when he saw me: “Your hair — it’s… big.”)

So it was pretty hard to face a 6:30 a.m. alarm yesterday morning, and having to leave the house by 7. A few weeks ago, I hadn’t thought I’d be going where I did, because I signed up to take a translator certification exam, something that could lead to my getting a lot more work. After a steady drip of ominous findings about this $300 exam, including the fact that fewer than 10% of those who take it pass, I allowed myself to be scared away, and canceled my registration. I’ll take it when I’m good and ready.

This left my morning open to attend the event I’d really wanted to all along, the AIM at Melanoma Patient & Caregiver Symposium at NYU Cancer Center, which is where my amazing medical team is based. I looked forward to hearing my doctors and nurse practitioners speaking in more general terms, rather than about my specific circumstances. Settle in for my take on the event, complete with “for beginners” summaries of the science behind my treatment, and critiques of the clip art used in PowerPoints, but be warned: It is long! Or, go outside and enjoy the spring weather instead, if it’s spring where you are. (I’m sure fall is nice this time of year, too.)

I saw Nurse Practitioner K (her identity is unmasked below) at the registration table when I arrived, and we hugged. It was exciting and odd to see her without her white coat, not unlike seeing a teacher off school grounds when you’re a kid. Dr. Jeffrey Weber, a newish doctor on the melanoma team, seemed excited about the bialys on the breakfast tray. Dr. Richard Shapiro, my melanoma surgeon, whom I hadn’t seen in ages, hugged me and made his same old Brooklyn joke about the Park Slope Food Coop. (That’s how he started out when we first met him, too.) He asked how I was doing, and was glad to find me well.

The program began with a dermatologist, David Polsky, whose research I had read about in a hospital magazine about a year ago. A couple of his slides presented visual cues as to why the number of melanomas has increased so dramatically over time:

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(You should have seen the men’s slide.)

Our penchant for bikinis is one thing that is killing us (or trying to). There was also a disturbing statistic: In the U.S., there are on average 42 tanning salons per city, dispensing harmful UVA/UVB rays to their customers. By contrast, there are an average of 19 Starbucks per city (though that number is much higher in NYC), and an average of 30 McDonald’s. There was also the de rigueur section of the dermatologist’s stock in trade, disgusting mole slides! (No, I didn’t take photos. Google Image Search will do very nicely for you.)

Dr. Shapiro spoke about melanoma surgery and sentinel lymph node biopsy, both of which he performed on me going on four years ago now. I had forgotten, until he vividly described it, the process of lymphoscintigraphy, which I imagine is the more exciting part of the surgery for him. The patient is injected with radioactive tracers while still awake (this part I remember too well, because the four tracers felt like fire under my skin), and after they are anesthetized, a Geiger counter is used to locate the sentinel lymph node and remove it for analysis by the pathologist. Then the surgeon proceeds to remove the melanoma tumor and a margin around it. And then, according to Dr. Shapiro, “I yell at the pathologist over the intercom to give me the results,” so he will know whether he needs to excise wider margins or take out another lymph node. I can’t quite believe all that happened while I was asleep. (I’m so grateful that I was.) Dr. Shapiro’s closing slide showed a man in silhouette (him?) pondering a sunset. (I started paying more attention to choices of clip art in the presentation slides or lack thereof, after this point.)

Dr. Weber took the stage. He is somewhat new to the melanoma program at NYU, and is Deputy Director of the cancer center. He started by sharing a quote attributed to George Canellos of the Dana-Farber Cancer Institute: “Melanoma is the tumor that gives cancer a bad name.” Dr. Weber gave a quick overview of the immune system. Here is my dime-store summary: Our immune system evolved to protect us from bacterial infections. There are actually two different immune systems present, innate and adaptive. The innate system is ready to fight disease at all times, or, as Dr. Weber described it, “Kill first, ask questions later.”  The adaptive immune system is composed of B and T cells, which can learn new things. We aren’t immune from cancer, because cancer cells derive from normal cells, and evolve quickly. One type of T cell from the adaptive system, CTLA-4, has become instrumental in immunotherapy. CTLA-4 is a checkpoint protein, or “brake” (Dr. Weber uses a slide with vintage photos of feet on brakes). In 1996, James Allison, the father of modern immunotherapy (as opposed to the grandfather of the historical concept of it, William Coley), working with a team at Berkeley, found that CTLA-4 was putting the brakes on T cell attacks on certain cancer cells. This discovery set off research that led to the development of ipilimumab, aka the immunotherapy drug I had in the fall of 2014. Ipilimumab is a checkpoint inhibitor, which means it disables CTLA-4, freeing the immune system to go full ninja on the tumors. As I discovered firsthand, a complete immune response can cause other things to go haywire. Ipi dispatched my lung tumors, but I only had two of the four infusions of it before it gave me horrible colitis, and I had to suspend treatment. Dr. Weber’s presentation showed me other unique side effects of anti-CTLA-4 I missed out on: rashes, hepatitis, pituitary gland swelling, and loss of skin pigmentation.

Dr Weber concluded by talking about the next wave of checkpoint inhibitor therapies to come down the pike, anti-PD-1. These may be even more potent than anti-CTLA-4, and in Dr. Weber’s description, “more like a sniper rifle.” These drugs tend to have fewer side effects than ipilimumab. Right now, combination therapy with ipilimumab and nivolumab (an anti-PD-1) is yielding a 60% survival rate at two years. Sequential treatment (using one drug and then another) also seems promising. Dr. Weber concluded by saying that checkpoint inhibitors have changed the face of cancer therapy, and not only for melanoma (which was the first disease for which it was effective). Today, it is being used for head, neck, lung and kidney cancers, as well as Hodgkins’ lymphoma. There are over a hundred ongoing trials centered on combination therapy for different cancers.

Dr. Anna Pavlick, my beloved Dr. P, went next. Her presentation wasn’t too folksy, and she used no clip art. You know why? I think I know why. After the symposium, she had to head uptown to class. She’s graduating with her MBA from Columbia in just a couple of weeks. She spoke about targeted therapies, which are the closest to my heart right now, because I swallow them in pill form every day. To understand targeted therapy, it is important to understand the genetic mutations of melanoma. There are a number of different mutations to the gene that are found in melanomas.

The most common mutation, accounting for about 50% of melanomas, is the BRAF mutation (represent!). The BRAF mutation tends to be present in younger patients (represent!), is most often responsible for primary melanomas on the trunk (represent!), and carries a higher incidence of brain metastases (represent!). Dr. Pavlick mentioned that brain metastases were not as common when melanoma patients received only chemotherapy. She didn’t elaborate on this, and I think I can guess why: Chemo didn’t do anything much for melanoma, so most patients died before the brain mets could happen. (There but for the grace of immunotherapy and targeted therapy, go I.) You might underscore that fact for an audience of medical residents, but before an audience of patients and their caregivers… not so much.

Both Dr. Pavlick and Dr. Weber are “lifers” in melanoma research and treatment. In both of their presentations, I got their profound sense of both relief and wonder that melanoma treatment has taken the turn it has. It is too soon for long-range forecasting of results. Those results are being compiled with each patient outcome, with each scan result, with every blood test. I could try to imagine how that feels, but I don’t exactly have a life’s work that has led me to a point like this. I can, however, imagine how it feels to be a person who showed up with exactly the right tumors at exactly the right time. It is heady, weighty, amazing, and hard to get my head around, no matter how many thousands of words I’ve spent trying.

There are currently two FDA-approved BRAF inhibitors, vemurafenib, and (my twice-daily companion) dabrafenib. They too come with their side effects: joint pain, muscle pain, rash, elevated liver function, hand/foot syndrome (which they cleverly screen for by scrutinizing patient footwear: if you are coming in wearing moccasins, slippers, or flip-flops, the drug may have induced calluses which make walking painful), fevers, photosensitivity, or even new skin cancers.

Another targeted therapy which is often used in combination with BRAF inhibitors are MEK inhibitors, which inhibit an enzyme that is found in a pathway overactive in melanoma. There are a couple of approved MEK inhibitor therapies, one of which I take. Dr. Pavlick indicated that with brain metastases, the BRAF/MEK inhibitors used in combination are effective for tumor control, especially in conjunction with gamma knife surgery. Dr. P concluded by saying, “It is possible that patients are being cured. We just don’t yet feel comfortable saying it.” Her signature humor made a brief appearance when she added, “I tell my patients, ‘You’ll be cured when I retire,’ because I can’t be held responsible for anything that happens after that point.” The future, she said, involves figuring out whether BRAF/MEK inhibitor therapy can be combined with immunotherapy; and, if sequential therapy makes sense, and if so, what the optimal sequence is. She said she would like to get to an 80% survival rate at five years.

At this point, there was a break. I headed for the immaculate restroom again. As soon as I sat down, I heard Nurse Practitioner R’s voice in the stall next to me. “Deb, I saw you come in. I thought you weren’t coming!” It turned out that the Patient Speaker spot on the program was one they had considered me for, before they heard I couldn’t make it. I was flattered, and I said (knocking on the hopefully-wood bathroom counter) that if all went well, I’d be delighted to do it next year. I hope I am able to do it. I’ll throw together a PowerPoint to end all PowerPoints, something I used to love doing in my former academic librarian career.

After the break, Dr. Melissa Wilson spoke about side effects of immune-related therapies. I shivered in my boots hearing that the most common cause of death with “immune-related adverse effects” is colonic perforation. I’m so lucky that my experienced team knew what to do to prevent that from being my outcome. The key to managing side effects is to presume any new symptom is related to immunotherapy. (This slide had the lone clip art, a cartoon detective with a magnifying glass.) Seeing the slide of endocrine side effects, I noted the many hypothyroid symptoms which I seem to have, and made a mental note to ask about these at my next checkup. (Lab tests are tailored to look for these side effects, per Dr. Wilson, but it never hurts to ask…)

The last presenters before the patient speaker were my most beloved Nurse Practitioners R & K, whose identities need to be unmasked here, because they are super NPs who need their names known, and because the whole idea behind using initials when I started was that I was blogging anonymously in the vain hope of this blog not being Google-able in case I eventually was searching for a job in my field again. (HAHA! NOT ANYMORE!) And the world really, really needs to know who my amazing medical team is.

Rajni Kannan and Kathy Madden spoke about survivorship care in melanoma. Rajni took the stage, and said she and Kathy are “partners in crimes… many crimes.” I heard Dr. Weber say earlier in the program that he’d worked with many NPs over the course of his career, and that these two are absolutely the best. I quite agree.

Until yesterday, I understood the term “cancer survivorship” very poorly. It turns out that in cancer generally, survivorship is an umbrella term that covers not only being declared NED, but also “living through, with, and beyond cancer.” Rajni noted that for advanced melanoma, survivorship is a new topic.  To speak of survivorship means considering many different aspects of the disease’s aftermath: disfigurement (as a result of surgery or lymphedema), subsequent recurrence of disease, a plan of care that is different from active treatment, and other health maintenance concerns. How long therapy should continue for patients who have no evidence of disease is currently an open question. (It’s a question that most certainly applies to me, though since I’ve experienced few debilitating side effects to targeted therapy, I am happy to proceed with the current plan of “if it ain’t broke, don’t fix it.”)

Rajni gave some quick profiles of former patients whose melanoma diagnoses prompted major changes in their lives. One of them had been a high-powered Wall Streeter, who cashed out, took all the classes she’d been meaning to take her whole life, ticked off bucket list items and then… did not die. Her savings dwindled, she moved back in with her parents in Montana, then met a new partner, got married, and started life over. Another patient moved from a teaching career to launching a bakery. It helped me a lot to hear that reinvention isn’t all that uncommon, that cancer can prompt this kind of radical change in one’s life. (Compared to the examples Rajni gave, I’d say my shift is relatively tame.)

Rajni and Kathy both mentioned a clinical trial related to survivorship, which I failed to ask them about after the program, but will at my next appointment. Kathy took the stage next, and further endeared herself to me by invoking Descartes and the mind-body problem, and how only today we have begun to recognize that medical science need not be disconnected from spiritual concerns. “Our patients are whole body people,” she said. Kathy’s clip art was on point, with lots of yoga and acupuncture and reiki photos, and one great shot of Dr P petting a therapy dog (they don’t just help patients!). She profiled a patient who was pulled out of the despondency of her diagnosis by participating in a drawing challenge on Facebook, even though she’d never drawn before.

Rajni and Kathy work tirelessly to resolve insurance conflicts. I knew about this particular talent of theirs, but until yesterday, I had never considered how that fits in to their model of care. Of course it does. By knowing their way around the minutiae of the behavior of insurers and pharmaceutical companies, they remove the burden from patients. Rajni is also promoting patients creating Health Care Proxies to keep on file, in the interest of having them in place well before any decisions need to be made.

The patient who spoke had a doozy of a story to tell, beginning with a “beauty mark” on his thigh, which he neglected for a long time. He wound up with multiple metastases, and entered a clinical trial for immunotherapy that (in every sense) saved his skin.

The question and answer period was fascinating, especially (as always) when it went off the rails. Dr. Shapiro asked Dr. Polsky whether it was really necessary to throw sunscreen out every year, because his wife always does. (Dr. Polsky said no, two years is fine.) Dr. Shapiro said he also likes to sit in the sun and is it bad if he comes back from the weekend with a tan? Methinks Dr. Shapiro planted that one, and actually knows better.  Dr. Polsky said you need to use a shot glass full of sunblock for whole body coverage. That is a lot of sunblock. Protective clothing seems a better option!

There was the question about herbal supplements. Rajni mentioned resveratrol, a naturally occurring (in red wine!) substance, and also turmeric (although I have some questions about that one, on the mice’s behalf if not on mine), but there aren’t yet conclusive answers on either one. Dr. Shapiro encouraged patients to take “anything you think will help you,” but he and Kathy both indicated that supplements are not tightly regulated, so it can be hard to know what you’re getting. In the case of targeted therapies, Kathy added, supplements can conflict with metabolism of the drugs, so she prefers to be consulted before patients start complementary therapy. I’ve consulted her a lot!

An audience member asked about dermatologists who focus specifically on melanoma and other skin cancers in people of color, and the answer was that there are such dermatologists, at NYU and elsewhere. The ratio of people of color diagnosed with melanoma to whites is about 1:100.

There is no connection between melanoma and psoriasis.

Rajni responded to a question about cannabis oil by saying that there are studies centering on control of pain and nausea, but primarily in patients undergoing chemotherapy. She reminded the audience that cannabis is metabolized through the kidney and liver, so it is a good idea to inform your medical team if you’re using it in any form.

Dr. Shapiro asked whether insurance covers checkpoint inhibitors and targeted therapies. Kathy responded that most do, and they have had few denials. Pharmaceutical companies have patient assistance programs for patients whose insurance has denied coverage. Rajni also mentioned copay assistance programs from pharmaceutical companies, and said she spends a lot of time on the phone setting these up. Kathy insists that availability of funds and insurance should never be a barrier for any oncology patient. Dr. Weber chimed in that he has spoken to many medical directors at insurance companies, and has found that in conversation with them, when he has found any family history of melanoma, that this “greases the skids” in a big way.

The requisite pseudoscience question finally arrived in the form of an audience member who was very irate that no one was talking about “the China diet.” Dr. Weber got on his phone right away while conversation continued. After a few minutes he lifted his head and dispatched further discussion with a few choice words: “Oh. This is a book that was published. It isn’t the result of peer-reviewed research.” Sick burn, Dr. Weber! The only wrinkle is that the woman who asked the question announced to the crowd, “I am a 42 year survivor of Stage IV melanoma.” We all applauded, because she of course survived in an era where such things just weren’t possible. I wondered why she hadn’t led with that.

The index cards went a little nuts after that, with a few too-specific case questions coming in, and the practitioners being unable to help themselves and starting to answer. The organizers quickly put the kibosh on this, because it was ludicrous and absolutely not the point, like interrupting Back to School Night to ask why Johnny failed his spelling test. This brief discussion of cases did give Dr. Shapiro the chance to use a phrase I remember him using back in the day, “bad actor caught early.” (I started musing about other bad actors caught early. Lindsay Lohan? A friend on Facebook suggested Joey Lawrence.)

To bring things back to general discussion, I scrawled my own question on a card: With the new therapies available and their increasing success rates, melanoma is on its way to becoming more of a chronic disesase (this is a notion that Dr. Pavlick first introduced me to when my lung metastases showed up). What are the benchmarks for this milestone? (After writing this down, I figured the obvious answer would be: Nobody else dies.) Dr. Weber invoked the 80% survival at five years number that Dr. Pavlick had given as the point when the definition of the disease may start to change. Rajni added that survivorship measures that are in place for other cancers (such as breast cancer) don’t work for melanoma, and they are still trying to figure out what those measures are. Dr. Wilson reminded us that pre-2011, the stats were dismal, and that only now can we start thinking of long-term survivors.

There was a final question about ocular melanoma screening, which requires a fully dilated eye exam. An eye exam is indicated every two years after age 35-40. (Ocular melanoma is quite rare, it is important to note, but wasn’t rare enough to spare Dr. Oliver Sacks.)

The session ended. I went to talk to Dr. Wilson, the side effects specialist, about the difficulty of getting the word out about my ocular toxicity on BRAF/MEK inhibitor therapy, which only happened to 1% of the patients in the trial (which meant, like, one person). I wasn’t sure what channels there were, beyond educating my own ophthalmologist (he’s been very amenable to learning, but not everyone has the access to medical journal articles that I do), or writing about it here and hoping someone finds it via a Google search. Dr. Wilson recommended online forums, and I told her about my blog.

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Tin foil hospital windows = Hmmmmm

I hit the immaculate restroom one last time before leaving. While I washed my hands, a woman who had attended the session complimented me on my hair. I told her that I like it, but it unfortunately made me more susceptible to melanoma. We began talking about the presentations, and it seemed as though she’d been in a different room — she was talking about immunotherapy or targeted therapy as though it were an alternative to surgery. Another attendee from the session showed up, and they seemed to be on the same wavelength, agreeing with each other. The second woman finally said, “You know, I have to say, I have breast cancer… and this sounds SO much better!” I bade them a quick farewell before I busted out laughing.

I repaired to the Greek place across the street from the hospital, and ate my customary spanakopita before heading back home. The boys had been out with J playing ball and were in a mellow mood. I took a nap, decompressed, and on my second attempt to get the boys out to the botanic garden for a bit, I was successful.

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Preview of coming attractions.

Later, I checked in on Facebook, because I knew that Emma of the widely-followed Dear Melanoma blog was doing poorly. She had passed away in Brisbane, in the company of her husband and parents, at age 25. On the 24th of this month, it will be a year since the world lost Kate Boone.

It was a privilege to spend my morning in the company of the doctors and nurse practitioners at the forefront of the fight against melanoma, and who also just happen to be my doctors and nurse practitioners. I am humbled by their tireless commitment to this work, especially since the landscape of it has only relatively recently become a bit less bleak. The presenters on the stage, and those of us in the audience, know the same thing very well: Statistics have no faces and names, numbers don’t have loved ones, and curves and graphs plotted on charts don’t lie awake at night, wondering if that headache is something to worry about.

If you’ve made it this far, thank you. And if you’d like to donate to our fundraiser for cancer immunotherapy research, you can do that here.

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