Abby’s Experience
Treatment had seemed to go smoothly; then, weakness began to overtake her leg.
At the end of my junior year of high school, a few days after my 17th birthday, l was diagnosed with alveolar soft part sarcoma. My mom had first noticed a lump in my leg almost a year earlier, but my pediatrician didn’t think it was anything to worry about. When the lump got bigger and started causing me pain, my mom insisted they do some tests. After an X-ray and an MRI, we found out that the lump was a tumor.
My type of cancer has a tendency to spread to the lungs and brain; so, the first thing they did was give me a CT of the chest and a brain MRI. I remember sitting in Spanish class, before we knew the results of the scans, and I was telling my friend about the tests; I was so weirdly calm and collected about it. “I’m not worried at all. There’s no way it’s spread.” Looking back, I think I was a little bit naïve – I guess it’s just being young and thinking something like that wouldn’t be in my future.
When we learned it had spread, I was really shocked; I don’t even think I fully grasped what was happening for quite a while. Honestly, for the first few months of my diagnosis, I still hadn’t even really accepted my reality and what the next few years of my life were going to be like. In some ways, I almost feel like that was kind of a blessing because it allowed me to just be in the moment and live my life as normally as possible.
A Debilitating Side Effect
I started treatment over the summer. They did gamma knife radiation on the spot on the brain, and around the same time, I started on a chemo pill and immunotherapy infusions. A few months later, I started proton beam radiation on the tumor in my leg every day for six weeks. I would end up being on the chemo pill for about two years, and the immunotherapy infusions for three years.
My body seemed to tolerate the treatments pretty well. I was very tired, and I had some nausea and vomiting, but nothing really huge. I kept going to school, which was very important to me. I wanted to do everything I could to stay on course because I didn’t want to let this get in the way of my plans for college.
Then, around a year after my diagnosis, and right before my freshman year of college, I started to notice weakness in my left leg. It was getting difficult to walk far distances, and my leg had started hurting. By the fall, it got so bad that I couldn’t walk at all; I couldn’t put any pressure on the left leg – it was just so weak. My left leg became super swollen – like, twice the size of my right leg. At that point, we knew there was something really wrong.
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 immunotherapy and how their resemblance to autoimmune conditions can be the key to treating them.
A Referral Leads to Relief
My oncologist referred me to a rheumatologist who had helped some of his other oncology patients who had similar, but different, symptoms. My rheumatologist admitted me to the hospital and I started me on intravenous immunoglobulin (IVIG) in the hospital. I was in the hospital for about a week, getting IVIG every day; and by the end of the week, the swelling in my leg had completely gone away, and the pain was a lot better. I still couldn’t walk on my own – I had to use crutches, but I was ready to start trying to walk again a little bit.
From there, my rheumatologist prescribed me two different nerve pain medications because I was still having quite a bit of nerve pain just from the irritation and from the swelling. And both of those worked amazingly as well. And then I started doing physical therapy (PT). I did PT for probably eight months and eventually was able to get the strength back to walk without the crutches or anything.
Today, three years later, I am officially in remission and I’m walking again. I do still have drop foot from nerve damage, and not a lot of sensation in the left foot, so I wear a brace every day to help me walk. But I feel 10 times better than I did when my leg weakness started. I’m able to do the things I love, and I’m able to take care of myself and do everything independently, which for a long time, I couldn’t.
How I Got Through
I get asked all the time how I got through the past few years. I’m naturally just a very positive person, and I think that mindset has been the most important thing for me. Not saying I can’t let myself be down sometimes and feel negative emotions, but I’ve just really tried to stay optimistic.
And I’ve had so much support around me. My mom and my family have been with me and have stayed positive with me through all of it. And I felt really supported by my friends and my community. After my diagnosis, my church held a big gathering for me, and it was amazing to feel that support. Knowing that I had people I could count on is what kept me strong throughout all of it.
I think when you’re in a situation like this, you have to find strength because you really need to advocate for yourself. Nobody else knows exactly how you’re feeling or what you’re going through except you. So, it’s extremely important to stick up for yourself. It’s not easy to tell people you need something – I never wanted to make people go out of their way, and I never wanted to feel like a burden. But it’s important to do everything you can to get the help that you need.
Abby is a senior at The Ohio State University, where she is majoring in psychology. Upon graduation, she plans to pursue a career in clinical counseling to support patients with chronic illnesses. Abby’s cancer continues to be in remission, and she enjoys staying active and spending time with her friends and family.
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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