The Other Side of Fentanyl

I have terminal cancer, and without the powerful painkiller, I live in agony

prescription scratched off of paper

The first thing I do each day is look at my phone. That’s how I keep track of medication. I use an alarm to ensure that I take my pills—some with food, some without—at consistent times every day. For my fentanyl patch, however, which I change every other day, I use a calendar reminder. It’s my system and it works for me.

Timing is important because I can’t allow the baseline-level dose of fentanyl to vary or my pain will come back; the medication works best when it’s administered consistently. My patches are a thin, clear plastic with discreet blue lettering. They are individually packaged and come with a stiff plastic backing that makes their application easy. There are five in each box. I’m not supposed to change patches immediately after I shower; the drug can be absorbed too quickly when applied to freshly cleaned skin. And to ensure the drug is evenly distributed, as well as to avoid the risk of contact dermititis—there’s something about the adhesive in the patches that irritates skin—I can’t put a patch in the same place twice in a row. So I have to move them around on the flat parts on my abdomen: just under my bra line, on the flat part of my pelvis, on my back, my arm, or my chest.

This wasn’t always my life, a life of pills and patches and schedules. I can remember when I didn’t know my way around all the downtown Toronto hospitals—didn’t know the locations of the comfy chairs where I could pass the time between appointments or how to get from Mount Sinai to Princess Margaret without going outside in the rain or snow. I can remember turning down Ibuprofen because I wanted to feel my pain, to know the extent of it and track my body’s healing through its diminishing noise. That was then, and this is now.

In 2013, at the age of thirty-seven, I was marketing director at the Nature Conservancy of Canada. My husband and I had just bought our first home. I was training for a half-marathon. And I had pain—excruciating pain that I managed by taking Advil and Tylenol as often as the packaging allowed. It didn’t really help. The ache was deep in my bones, like the worst toothache you’ve ever had, writ large. It throbbed and spasmed and shot like needles throughout my body. The pain grew so intense that I went to emergency, but doctors just gave me more painkillers and sent me on my way. It hurt too much to sit, so I stood and leaned through meetings at work.

The pain finally made sense when I was diagnosed with metastatic breast cancer (MBC). It wasn’t stress from over-training causing me pain, as I had initially thought; it was cancer in my bones—cancer that had metastasized to remote parts of the body to form new tumours. Even though I have cancer in my bones, my liver, my lungs, and elsewhere, it’s all breast cancer. MBC is terminal. It is incurable. But it can be treated for an indeterminate amount of time. The median survival time is still two or three years, but a small number of people live for years—some, even, for more than a decade.

Five years ago, I had never heard of fentanyl. It wasn’t all over the news the way it is today. In fact, it wasn’t the first tool my doctors and I tried for managing my pain. Initially, my oncologist prescribed short-acting hydromorphone (a medium-potency opioid taken as a pill), and it gave me tremendous relief. The trouble was when it wore off. It felt like the pain came back stronger, and it took more hydromorphone to give me relief. I tried, not always successfully, to keep to a strict schedule—taking the pills every four hours, like clockwork—but even then, they would wear off in my sleep and I would wake in agony. So my oncologist moved me from short-acting to controlled-release hydromorphone. This improved my pain management, but I struggled with side effects. My bowels were so sluggish that I had a partially impacted bowel and I was unable to keep food down—for good reason: it had nowhere to go.

My oncologist referred me to a palliative care specialist who suggested I instead try fentanyl patches. Because the drug delivery method is epidermal—through the skin rather than the stomach—the patch seemed to have less of an impact on my digestive tract. And because fentanyl is so potent, it took a very low dose to achieve equivalency with the hydromorphone I’d been taking before. By making the change, I was able to achieve the same level of pain management with a much smaller amount of drugs and many fewer side effects. I still worried that taking a stronger medication could increase the risk of an overdose. I could hear the kindness in my palliative nurse’s voice when she explained that fentanyl is never prescribed as a first-line treatment to what is called an “opioid-naive” patient. But I was on its lowest dose, equivalent to slightly less than the time-release hydromorphone I had been taking.

Fentanyl patches have not only given me relief from pain for three years now; they have given me my life back. I can now usually sleep through the night. I can now sit at a table for a meal or at a desk to write. I still can’t run, but I can walk. And fentanyl doesn’t slow down my bowels to the point of near-failure. I never have to experience the agony of feeling my medication completely wear off—that raw and naked pain, all-consuming like the darkest night. Pain and its management no longer dominate my thoughts every minute of the day. And because I am acclimated to narcotics and using just enough, neither pain nor opioids cloud my mind any longer.

The fentanyl patch has been a revolution for me, radically changing my experience of my pain. We hear so much in the news about the dangers of fentanyl, real dangers that we need to get in hand; but this drug has been around for years, quietly helping people with cancer like me to get pieces of our lives back.

With all the chatter around the opioid crisis, and fentanyl in particular, I am hearing a lot of voices. I am hearing bereft loved ones raw in their loss. I am hearing police chiefs and politicians. I am hearing doctors and I am hearing harm-reduction specialists. There is a fever pitch to it, and it stirs up legitimate public fear. Medical professionals don’t call something a crisis lightly. But what I am not hearing enough of are the voices of patients. Voices like mine. The voices of people living with debilitating pain made tolerable by the mercy of opioids like my fentanyl patches. I am deeply grateful for this drug’s effective palliation of my pain. Without it, I would struggle even more than I do.

When people hear me tell them I take fentanyl, they often recoil. Aren’t you scared? they ask. We hear a lot about how powerful an opioid fentanyl is—and it is strong. Most opioids, like codeine or meperidine or even OxyContin, are measured in milligrams per day, whereas fentanyl is measured in micrograms per hour, as released by the patch. Where the short-acting hydromorphone, which I still use as needed to handle breakthrough pain, is the equivalent of about five times the strength of morphine, fentanyl is roughly 100 times more powerful. Some of the overdoses we’re hearing about in the news are linked to carfentanil, a fentanyl analog that is 100 times more powerful yet. However, we don’t hear enough about how opioids, and especially fentanyl, fit into a doctor’s plan to help a patient manage their pain.

But no, I reply, I’m not scared. I’m grateful to the doctor who prescribed fentanyl to me. The patches have saved me misery. The drug has radically improved my quality of life; it makes me nervous to hear people express fear and panic in discourse about fentanyl-related deaths. I heard a grief-stricken man on the radio advocating for the removal of fentanyl from pharmacies. It’s not that I’m unsympathetic to the overdose crisis, but it scares me to think of losing the most effective pain management tool I have.

Nobody manufactures a single patch in the dose I’ve been prescribed, so I use two: one 25-microgram-per-hour patch and another of 12.5 micrograms per hour. These are the two lowest doses available, but they’re still high enough to hurt you if you’re opioid-naive—if you don’t have experience using other, lower-dose opioids like hydromorphone or OxyContin—so I’ve been cautioned to be careful with the patches around children or pets and to wash my hands well after each time I change one. But I am only one patient. I wanted to know how I fit into the greater palliative picture, and how my pain-management experience compares with that of people with cancer and without.

I spoke with Jenny Lau, a palliative care physician at Princess Margaret Cancer Centre. By way of disclosure, this is where I am treated for my cancer, but Lau is not my treating clinician; I am treated by one of her colleagues. Pain management in cancer care follows the World Health Organization’s 1986 cancer pain ladder for adults. First, they give a patient a non-opioid like Tylenol or Advil. If pain persists, they offer a mild opioid like codeine. If that doesn’t help the patient to be free of cancer pain, stronger opioids like hydromorphone are used until a level is reached where a patient finds relief. Lau told me that, in addition to a patient’s drug history, they need to consider co-morbidities such as kidney or liver function and whether the patient can process the narcotics prescribed. Luckily, there are a variety of options for a doctor like Lau to choose from—some narcotic, some not—to find the right solution for any patient’s pain.

While every opioid prescription is different, it is possible to both increase and decrease a dosage. I’ll use myself as the example here. Last year, my cancer was growing rapidly. Tumours were pressing on nerves and tendons, restricting motion and causing neuropathy. My mobility was affected. I was in a lot of pain—even for me, and I live with pain—so my fentanyl dose was increased to 50 micrograms. After chemotherapy shrank the tumour in my neck and the pain diminished, I was able to reduce my patch from 50 micrograms to 37.5. I think it’s important to note that, unlike the unregulated use of a recreational user, when prescribed use goes up or down it is titrated gradually between dosages and kept at the lowest effective level. This minimizes the pain of withdrawal and reduces the risk to the patient. The idea is to use the minimum dosage possible to manage pain. Best-case scenario, the pain recedes and the side effects are minimal.

When I was first prescribed fentanyl patches just over three years ago, the guidance I received from my pharmacist was to fold each used patch in half and toss it in the toilet. This was to protect non-users from accidental exposure by contact, and to prevent drug seekers from rooting through my trash for used patches. A properly used patch still retains some of the original drug. There are lots of ways to abuse these patches. A palliative nurse once told me that an addict might smoke the used patches, plastic and all; apply several used patches at once; make a tea from the patches; chew on them; or scrape the entire used gel from a patch and ingest it. I didn’t like throwing my used patches in the toilet, so I saved them up and returned them to the pharmacy for safe disposal. I had worked too long in land and water conservation not to understand what happens when too many drugs go into the water supply.

It’s difficult to know how widespread fentanyl abuse is today. There are simply too many avenues of access. Users can buy it directly—patches, new and used, are sold on the streets—or without knowing it, when it’s cut into and sold as other drugs. That’s one of the things that makes the opioid crisis so scary. However, there are controls in the medical system that are effectively taking the used-patch avenue off the market.

On October 1, 2016, the Ontario Public Drug Programs Division of the Ministry of Health and Long-Term Care launched a province-wide Patch-for-Patch Fentanyl Return Program. Now, rather than expecting patients to safely dispose of used patches, the onus for tracking and disposing of the patches falls to pharmacists. When I remove a used patch, I stick it on a piece of paper encased in a plastic sleeve. In order to refill my prescription, I must return an equal number of used patches. Initially, the system felt paternalistic and untrusting to me, knowing that I wasn’t contributing to the problem. But I know, too, that a society needs to protect its most vulnerable members, and that the patch-return system is working.

If I’ll be travelling at the time of a prescription renewal, I can either get special permission from my doctor for extra patches or, depending on the duration of the trip, I can turn in a partial month’s used prescription early so I have enough patches for the trip. When I return, the number of patches reverts to a one-month prescription, regardless of the number turned in used.

Everything is counted and accounted for.

At the pharmacists’ end, Health Canada recommends that the name of drug, along with its quantity and strength, be recorded for every return made. The returns are stored in a single-use, one-way entry container and then destroyed by a licensed collection service.

I think about my life before fentanyl. The all-consuming pain I struggled to live with; the rapid erosion of my independence. My husband would go to work and when he’d come home, I’d have a list of things that needed to be done that I couldn’t do—simple things, such as carrying the laundry down to the basement or moving a cast iron pan. I was barely a person. I was pain incarnate. A drug is neither good nor bad in its own right. Fentanyl is neither evil nor benign. It just is. And for many people, people like me, it is a crucial tool that allows us to live.

Teva Harrison
Teva Harrison (@robotpilot) wrote and illustrated In-Between Days, a memoir about living with cancer.