Christy’s Experience
Immunotherapy side effects blindsided her; now, she's shedding light on the risks
I was diagnosed with Stage 2 breast cancer in December 2023. At my initial oncology appointment, the team told me chemotherapy would be part of my treatment. Fear, dread, and panic hit me like a freight train, as I had heard the horror stories. I braced myself for chemo, terrified it would be the hardest part of the journey.
Little did I know, chemotherapy would become the least of my worries.
My treatment plan included chemotherapy combined with immunotherapy, followed by surgery and radiation.
What I learned quickly is this: chemotherapy, while difficult, is largely predictable. There are established protocols for nausea, mouth sores, and fatigue. The side effects are well-known and well-managed. Oncologists know what to expect.
Immunotherapy is different.
Because it activates your unique immune system, the reactions are anything but predictable. No two immune systems respond exactly the same way.
Editor's Note
Because each person’s immune system is unique, a treatment that brings side effects for one patient may cause no negative effects for another.
Blindsided by Side Effects
After just two doses, my immune system spiraled. First came pancreatitis. A month later, it attacked my joints. Literally overnight, I went from walking normally to being in excruciating pain and unable to walk at all.
When your mobility disappears, your quality of life shrinks with it. Your world becomes dark and very small, very quickly.
The only thing I could do was sit on my couch and watch TV. I kept seeing those immunotherapy commercials that show “patients” out eating dinner or having fun on a boat. I couldn’t get on a boat. I couldn’t even get in the car to get there. Every time those ads would come on, I’d get so angry. Because what they’re showing isn’t true for a lot of people; immunotherapy can start attacking parts of your body that are healthy, and it can be debilitating.
I am not telling anyone to avoid immunotherapy. It has helped many patients, and not everyone experiences severe side effects. But the public messaging around immunotherapy often suggests it is gentler and easier than chemotherapy. In my case, that was not true. Every hospitalization I endured was because of immunotherapy – not chemotherapy.
Finding Treatments That Work
Eventually, I was connected with a rheumatologist who could help me; by then, I was at my breaking point. I remember sitting in her office in absolute tears – in so much pain – and I just told her, “I can’t live like this anymore.”
My rheumatologist was wonderful with me – she really listened. (I think my first appointment with her lasted at least an hour.) She said we’d try different medications to see what my body would respond to. And, while she was optimistic that we’d find a medication that could help me, she was careful to manage my expectations. I remember her saying, “I can’t tell you if this will ever go away. I can tell you it might get better, and we can try to make it better, but I can’t tell you it’ll go away.”
Thankfully, we did find treatments that worked. Now, life is back to some form of “normal” – I can walk again, be active again, enjoy life with my husband and daughter. But immunotherapy left me with some chronic health problems that will be with me for the rest of my life. It also left me with an altered immune system, and that’s not just a “me” thing – every patient’s immune system is forever changed by immunotherapy.
important reading about side effects
Side Effects 101: Learn how side effects of immune-related cancer treatments are unique and how to best approach them.
Go Deeper: Learn about side effects from immune checkpoint inhibitors and how their resemblance to autoimmune conditions can be the key to treating them.
I didn’t know about any of this when I started immunotherapy. It had been presented like there was nothing to fear about it.
People need to know that there can be side effects. They may be mild, or they may be severe; but however they show up, you need to be able to advocate for yourself, ask questions, and push to get a specialist involved who can connect all the dots and help you get on the right treatment for your side effects.
It’s hard to advocate for yourself when you’re in so much pain, I know. When you’re at your weakest, you’ve got to be your strongest advocate. But know that you’re not alone. There are a whole lot of us who want to throw things at the TV when those commercials come on.
Christy is a retired 33-year educator, having worked as a high school history teacher and then as a school librarian. After her harrowing experience with immunotherapy, Christy has become passionate about shedding light on immunotherapy's side effect risks so that other patients go in aware and prepared. Christy lives in Ohio with her husband and daughter.
Christy's Case
Cancer Type
Breast Cancer
Immune-Related Treatment Type
Immunotherapy
Immunotherapy Side Effects Experienced
- Pancreatitis
- Joint/bone pain or swelling
- Mobility issues (stiffness, weakness)
- Headaches
Important: The opinions expressed in “Lived Experience: Stories from Patients and Care Teams” (Lived Experience Stories) are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of Foundation for Autoimmune & Cancer Support (FACS). Blogs are not reviewed by a physician or any member of the FACS editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. FACS does not endorse any specific product, service, or treatment.
Do not consider Lived Experience Stories as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on FACS. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. FACS understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.
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