Ask a Survivor: Side Effects
Q: What side effects can I expect with treatment?
A: This is, far and away, the most-asked question every long-term survivor hears, usually under the guise of, “Will I lose my hair?” Every one of us asks, “Will I lose my hair,” and the answer is, inevitably, “Yes, plan on it.” Everyone in society needs to understand that the subtext of this question is, “What sort of side effects can I expect?”
And, at every support group I’m in, we always go dead silent, because, the god-awful truth is; even we don’t know, and we’ve survived them. And there are so many possible side effects based on your disease, the treatment, and the multiple different drug combinations that make it nigh-impossible to accurately predict. When I was signing my life away to begin radiation treatment, I honestly tried to read the complete list of potential side effects of radiation treatment — I got as far as, “May result in increased cancer risks,” before I realized I could either sign on the dotted line and ask about treatment side effects as they came up, or I could curl into the fetal position and sob. I postponed the latter (don’t worry, it happens to the best of us) in favor of signing the form and undergoing treatment.
I was rewarded with my lack of diligence a few weeks later when I developed a nasty burning sensation on my head, and noticed the fairly obvious, glaring print in the radiation handbook (that’s what I called it — your radiation oncologists will send you home with a binder detailing the most-common questions, problems, and scenarios patients are likely to encounter) that, before I tried any home remedies, I should check in with the radiation folks. God help you if you need non-emergent medical advice after-hours; I literally had to wait a few days with a terrible itching/burning sensation before I got to ask my oncologists. Imagine my aggravation at learning their recommended go-to solution was Vaseline. Apparently, it’s good for ouchies of all kinds. I asked why, if there was such an obvious solution, they cautioned against any action. My radiation oncologist told me that a lot of people tried very weird home-made remedies. On Planet Cancer, whenever you hear the word, “Weird,” it means you should probably stop asking about it, unless you want a Stephen King novel in medical terminology.
There are some obvious ones that we can all go down and list together, because everyone on Planet Cancer knows about them: hair loss, weight loss, chemo brain, nausea, pain, fatigue, and sterility. Then, we quickly have to start discussing the specifics of your disease and treatment, because the treatments and side effects immediately start diverging. Number one side effect that absolutely no one will warn you about: almost all of your pre-cancer friends are going to disappear into the ether. Almost all of my friends nowadays are chronic disease survivors or cancer survivors. And, of my pre-cancer friends I’m still close with, I honestly wouldn’t have guessed they’d stick with me.
As a quick example, my leukemia friends are permanently immunocompromised. I may or may not be, based on which of my oncologists I ask, but my blood counts never did anything too interesting during treatment; I feel very safe in that assumption because the nurses chased me down and lectured me when I had chronically low potassium levels (which may have been a side effect of treatment, may have been that I wasn’t getting enough potassium in my diet, it may be that I was chugging water like a marathon runner on infusion days). I recently gave advice on undergoing an MRI to an ALL friend, which, I thought would’ve come up in her medical history (she was diagnosed before me), but, I guess those blood cancer folks get PET and CT scans (extra radiation is a major no-no for brain cancer folks, so I rarely get CT scans), which leaves them asking about what surgical implants are safe in an MRI. Even though all survivors are happy to talk to each other about anything, we don’t always know the right questions to ask, or the right answer (all of my surgical implants are MRI-safe; hers may or may not be)(again, specifics are important, and, when in doubt, ask the intake nurse or the technicians).
When talking with physicians and researchers, and then using that data, the waters get even muddier. It’s not a simple question of, “What side effects are you experiencing,” it’s actually three questions:
- What side effects do we actually notice?
- What side effects do we feel comfortable discussing with our oncologists?
- What side effects will actually be noted and taken seriously?
There isn’t a whole lot of overlap in those questions. I very well could’ve had erectile dysfunction throughout treatment, but I absolutely would not have noticed because, shockingly, when you’re exhausted, terrified, and being poisoned, getting laid isn’t a priority. If I had, I certainly wouldn’t have felt comfortable talking about it with my physicians (nothing wrong with them, I’m just the sort of person who really doesn’t feel comfortable discussing my personal genitalia with anyone unless they’re on fire). The experimental treatment I was on (a repurposed multiple myeloma agent called Marizomib) gave me unbelievable, eye-watering pain, and I complained about it — not frequently, because I didn’t want to get a reputation as a wilting orchid who couldn’t take his medicine (yes, that happens, and anyone discussing side effects with patients needs to figure that, for every one thing we gripe about, there are two or three things we’re not noticing, not comfortable discussing, or actively downplaying because we’re aware of how lethally ableist medicine is). It wasn’t until about four or five weeks into treatment that I learned they’d actually started taking it seriously enough to send a note back to the drug company (and, somehow, the dry warning, “May cause pain at the infusion site” seems a woefully inadequate description). I also got hallucinations as a side effect of Marizomib (obviously, those didn’t last)(I think), but, because those were already established and correlated with drug action (that chemo was working), they didn’t really bother me… at first. Later in treatment, when the flatware came alive and started attacking me, I did start to empathize with folks who discontinued treatment.
Whenever we talk about discontinuing treatment due to side effects, there’s a natural inclination to minimize others’ suffering, and say that they didn’t tough it out. I’ve never met a survivor who thought the pain was so great that they couldn’t take it. Pretty much 100% of us would be willing to attempt crucifixion if there was a solid chance it would deliver us remission. What I have seen, though, is physicians discontinuing treatment when there are dangerous, severe side effects (and, if your platelet counts drop to dangerous levels, then it really is time to talk about other treatment options). Survivors voluntarily discontinue treatment when treatment is beyond the human experience of reference, and there’s no evidence that treatment is working. My favorite example is one of my cancer mentors, Jenna, who is in a clinical trial. As far as I can tell, she hates treatment as much as I did (probably more, because it’s changed her sense of taste). BUT, like me, she goes in, week after week to the infusion center, because her scans show her tumors shrinking and fading. I know another guy on exactly the same drugs I was on, who left the trial because MRZ didn’t work as well. And, frankly, if you’re taking that level of punishment, you want something like improvement. Treatment is unpleasant, dangerous, and expensive; we’re not going to put up with it if it’s also not working.
To the woman who requested this essay as an educational piece for drug companies, I’d say that the biopharma industry has to be concerned with drug efficacy, and basic safety. That’s it. Everything else is a bonus. If a company developed a sarcoma drug that was 100% effective and every single patient survived, but was left blind and unable to walk, I guarantee you, someone out there will be desperate enough to take that gamble, because blind and crippled stacks up well next to some of the other horrors that cancer has in store for us.
TLDR: survivors don’t discontinue treatment because we’re uncomfortable. Physicians don’t recommend discontinuing treatment because we’re uncomfortable. Physicians recommend going off treatment when treatment is killing us faster than the cancer (and a lot of treatments are correlated with increased cancer risks, it’s just that more cancer later beats dying of the disease now). Survivors go off treatment when we’re utterly miserable and there isn’t any real evidence that it’s working. If treatment seems to be working, we will endure it.
