When Fentanyl Works: How I Used Fentanyl to Manage Terminal Cancer Pain
"Having terminal cancer means managing pain carefully and consistently. And it means taking a dangerous opioid that has long improved the lives of people like me."
When fentanyl works
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.
Timing is important because I can’t allow the baseline-level dose of fentanyl to vary or my pain returns. My patches are a thin, clear plastic with discreet blue lettering. They’re 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 showering; the drug can be absorbed too quickly when applied to freshly cleaned skin. And to ensure fentanyl is evenly distributed, as well as to avoid contact dermatitis—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. I move them around the flat parts on my upper body: just under my bra line, on my pelvis, my back, my arm or my chest.
This wasn’t always my life. I can remember when I didn’t know my way around all the downtown Toronto hospitals. I can remember turning down ibuprofen because I wanted to feel my pain, to track my body’s healing through its diminishing noise. That was then, and this is now.
A crushing diagnosis
In 2011, at the age of 35, I was working 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 throughout my body. It grew so intense that I went to the emergency department, but doctors just gave me more painkillers and sent me along. Sitting hurt too much, so I stood and leaned through meetings at work.
The pain finally made sense when I was diagnosed in 2013 with metastatic breast cancer (MBC). It wasn’t stress from overtraining 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 liver, my lungs and elsewhere, it’s all breast cancer—and it’s terminal. But MBC 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 longer—some, even, for more than a decade.
Trial and error
Fentanyl wasn’t the first tool my doctors and I tried for managing my pain. Initially, my oncologist prescribed short-acting hydromorphone (an 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—but even then they’d 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. I developed a partially impacted bowel and was unable to keep food down—for good reason: it had nowhere to go.
Next, 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 usually sleep through the night. I can 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. Pain and its management no longer dominate my thoughts every minute of the day. And because I’m acclimated to narcotics and using just enough, neither discomfort nor opioids cloud my mind any longer.
The fentanyl patch has radically changed 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.
A fresh perspective
With all the chatter around the opioid crisis, and fentanyl in particular, I’m hearing a lot of voices. I’m hearing bereft loved ones raw in their loss. I’m hearing police chiefs and politicians. I’m hearing harm-reduction specialists and doctors. There’s 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 discomfort made tolerable by the mercy of opioids like my fentanyl patches. I’m 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 say I take fentanyl, they often recoil. “Aren’t you scared?” they ask. We hear a lot about how powerful an opioid fentanyl is. Most opioids, like codeine, 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 hear about in the news are linked to carfentanil, a fentanyl derivative that is 100 times stronger 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 deaths related to fentanyl. I once 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 my most effective pain-management.
A life-saving medicine
Nobody in Canada manufactures a single patch in the dose I’ve been prescribed. I use two: one 25-microgram-per-hour patch and another of 12.5 micrograms per hour. These are the two lowest doses available here, but they’re still high enough to hurt you if you’re opioid-naive—if you don’t have experience using 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 after each time I change one. But I’m only one patient. I wanted to know how I fit into the greater palliative picture, and how my experience compares with that of people with cancer and without.
I spoke with Dr. Jenny Lau, a palliative-care physician at Princess Margaret Cancer Centre in Toronto. By way of disclosure, this is where I am treated for my cancer, but Lau is not my doctor; I am treated by one of her colleagues. Pain management in cancer care is often based on 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 tramadol. 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 comorbidities such as kidney or liver function and whether the patient can process the narcotics prescribed. Some medical professionals only use the pain ladder as a basic guide for care, preferring a completely individualized approach to pain management. 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.
While every opioid prescription is different, it’s possible to both increase and decrease a dosage. I’ll use myself as an example. 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—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’s 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 lowest dosage possible. Best-case scenario, the pain recedes and the side effects are minimal.
When I was first prescribed fentanyl patches, 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—I had worked too long in land and water conservation not to understand what happens when drugs go into the water supply—so I saved them up and returned them to the pharmacy for safe disposal.
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 the province-wide Patch-for-Patch Fentanyl Return Program. Now, rather than expecting patients to safely dispose of patches, the onus for tracking and disposal falls to pharmacists. When I remove a used patch, I stick it on a piece of paper encased in plastic. In order to refill my prescription, I must return an equal number of used patches. Initially, the system felt paternalistic and untrusting. But I recognize that a society needs to protect its most vulnerable members.
If I know I’ll be travelling at the time of a prescription renewal, I can do one of two things: I can 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 always reverts back 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 the drug, along with its quantity and strength, be recorded for every return. The returns should be stored safely 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 simple things that needed to be done that I couldn’t do— moving a cast-iron pan or carrying the laundry down to the basement. 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.
Next, read the inspiring story of one Vancouver activist helping to curb drug overdoses.
Teva Harrison passed away on April 27, 2019 at the age of 42.