Mucosal melanoma survivor: After trying immunotherapy, I found success with my Plan B
When I was diagnosed with stage IV mucosal melanoma of the nasal cavity in October 2017, I got to MD Anderson as quickly as I could. My cancer was advanced and very rare, with mucosal melanoma making up only about 1% of all melanoma diagnoses a year. And I wanted to be treated at a place where they’d seen a lot of cases like mine before.
Unfortunately, I developed side effects to immunotherapy pretty early on, so I had to stop taking it. But my doctors came up with an alternate treatment plan, and I’ve been cancer-free since March 2019. So even though immunotherapy didn’t work for me, MD Anderson did.
My mucosal melanoma symptoms and diagnosis
The only mucosal melanoma symptoms I had were a watery left eye and some nasal congestion. I thought they were from a sinus infection, so I went to a local ear, nose and throat doctor. He found a large growth on the left side of my sinuses and referred me to a head and neck surgeon.
A few days later, I had a biopsy, which showed the growth was cancer. An MRI and a PET scan revealed the tumor was about the size of a golf ball and located behind my left eye. It was already invading the surrounding tissues, including my left tear duct. That made it stage IV.
It was scary to find out I had something so rare. Before my diagnosis, I’d never even heard of mucosal melanoma.
My local surgeon offered radiation therapy. It wasn’t guaranteed to work, and I’d almost certainly lose my left eye, but it might keep the cancer stable. The only alternative was surgery, and the cancer was too big to be removed.
I got to MD Anderson as fast as I could. I knew my doctors there would have access to the most up-to-date knowledge and research, as well as clinical trials I might be able to join.
My immunotherapy side effects
At MD Anderson, my doctors reviewed my records, performed their own tests and confirmed my diagnosis. They agreed the tumor was too large to be removed right away, but suggested that a combination of immunotherapy drugs (ipilimumab and nivolumab) could shrink it. I decided to give it a try.
The side effects — a fever, back pain and neuropathy — started right after my second treatment. I stopped the immunotherapy and started receiving weekly immunoglobin infusions to restore my immune system. My arms and legs became weak, so I did occupational and physical therapy exercises to regain my strength.
Plan B for my mucosal melanoma treatment
Once I was better, I met with my doctors at MD Anderson to discuss next steps. Immunotherapy wasn’t an option anymore, so I was worried about how we’d control the tumor long-term. Scans taken in April 2018 showed it was still growing.
My doctors recommended five weeks of radiation therapy, followed by six cycles of chemotherapy and finally, surgery. I stayed with a friend in Houston during my radiation treatments and had chemotherapy infusions near my home in Mississippi. Dr. Su performed the surgery at MD Anderson on Feb. 6, 2019. The tumor had shrunk to the size of an almond and could be taken out entirely through my nose with minimally invasive surgery.
Cancer-free after mucosal melanoma treatment
I lost my hair and still have a little neuropathy, but mostly, my life is back to normal now. I come to MD Anderson every three months for check-ups. If my scans are clear after the next one, I’m hoping they’ll get bumped back to once every six months.
No matter how often I have to come back to Houston, though, I am so grateful to my doctors and nurses at MD Anderson. The care I receive from them is truly exceptional, and their team approach really stands out.
When their first plan didn’t work, they came up with another one that did. And it took me from having a tumor so large it was considered inoperable to having one so small it could be removed with outpatient surgery. I’ve been cancer-free ever since.
I truly believe I am a walking, talking miracle. So, don’t give up, no matter how serious your diagnosis is. There is hope. And every day, month or year you survive, there are new advancements, discoveries and options for treatment.