A woman hunches over with a pained expression as a multitude of textures and color create chaos inside her body.

Immunotherapy & Late-Stage Melanoma Treatment

When I was diagnosed, I had never heard of the term before. I knew what chemotherapy was and I knew it was awful. I was trying to prepare myself for all the terrible side effects I was about to start having once treatment began.

Treatment for late-stage melanoma

I was a little naive, but I assumed they’d treat my metastatic melanoma like they do other cancers - with numerous surgeries, possible radiation, and chemotherapy. As it turns out melanoma doesn’t respond well to traditional chemotherapy treatments, and there are relatively new treatment options available for late-stage melanoma.

Enter: Immunotherapy.

Immunotherapy vs. “traditional chemo”

Both treatments are technically called chemotherapy because they’re given via some sort of drug cocktail over an IV drip. To oversimplify it, “traditional chemo” wipes out everything. It gets rid of all the bad things in your body while also getting rid of all the good things. Immunotherapy, on the other hand, actually reprograms your immune system to fight off the cancer on your behalf. These drugs sort of release the breaks on your immune system so they can attack the cancer cells. It comes with its own set of side effects, but they’re very different than traditional chemotherapy side effects.

My experience with immunotherapy

Since I was only 29 years old and relatively healthy (minus that whole stage IV cancer thing), my medical team made the decision to be as aggressive as possible with my treatment plan. They thought I should be able to handle it and wanted to set me up for the best possible long-term outcome.

In 2015, the FDA approved the combination of two immunotherapy drugs: Nivolumab (Opdivo) and Ipilimumab (Yervoy).1 Just three short years before I was diagnosed, my treatment options didn’t even exist - how crazy is that!? The plan was to have four infusions of the combination drugs and after that, I’d continue on monotherapy with just Nivolumab.

Early side effects of immunotherapy

They prepared me for the side effects I’d likely have with this newer treatment option. I was to be on the lookout for coughs, fevers, general fatigue, excessive diarrhea - all things that would indicate my immune system was working too hard and starting to attack my healthy tissue(s). They told me that immunotherapy could take a while to start working and I likely wouldn’t notice anything until 6-8 weeks in.

I had my first infusion of the combination mid-October of 2018. It was sort of strange to be sitting in the infusion center, surrounded by other cancer patients, and yet I felt fine. I went home and continued my day-to-day life - just now, I had cancer.

Severe fever

It was almost two weeks after my first infusion when things started to go downhill. I was walking my dog and had a strange feeling come over me. I felt weak, sick and just overall like I got hit by a bus. I rushed us home, made some soup and assumed I was catching a cold or something. I woke up in the middle of the night with a fever that I couldn’t break. I contacted my medical team the very next day and they had me come in. I had such a high fever that I was shaking uncontrollably in the waiting room despite being covered in 3 heated blankets. I had never felt like this before and I knew something was very wrong.

Hospitalization and steroids

After a quick examination with the doctor, I was admitted to the hospital. They didn’t really have any idea what was going on but knew I needed to be monitored. My entire hospital stay could be a post within itself, but long story short, I was there for 9 days. I was some sort of lab rat as they threw test after test at me trying to figure out what was wrong. All the time spent in MRI tubes and X-ray machines showed my tumors had shrunk, indicating the treatment was working. Eventually, we found out that my immune system responded so well to the combination treatment that it was in overdrive and I had a severe systemic response. After a couple of days of steroids, I was released back home to try to recover from it all.

My ongoing side effects from immunotherapy

Since these treatment options are so new, I feel like side effects are quite literally anything. Which is very difficult to wrap your head around. For the duration of my treatment I battled quite a few, different side effects.

Digestion issues

I had terrible digestion issues and had what I called “the surprise barfs”. Basically, I’d feel sick all of a sudden, need to vomit, and then return back to normal as if nothing happened. I actually started a barf bingo card of all the places I barfed. Learning to barf in public is both an art and a science ;)

Fatigue

My fatigue was insane. It took all of me to get through the work day. I would come home, fall asleep on the couch, get up and go back to bed. By Friday evening, I was a zombie of a human being. My body was fighting so hard inside and taking all my energy.

Skin issues

My skin changed in more ways than one. Suddenly I had super dry skin that was peeling all the time. I put vaseline on my face every night before bed because I couldn’t get enough moisture. Then, I started getting white spots all over my legs and back. I developed vitiligo and had depigmentation in random spots.

Joint pain

My joints ached. At one point, I had to go on a low-dose steroid to control the joint pain. I couldn't get out of bed on my own and walking hurt my feet and knees so, so bad.

Not much difference on the outside

I didn’t lose my hair. In fact, if you didn’t know, I didn’t look like I was going through cancer treatment. I looked totally normal (just a little randomly nauseous and walking like an 80-year old lady). This made the stigma of ‘just skin cancer’ even more difficult to battle. On the outside looking in, I looked perfectly normal when in reality, the inside of my body was a war zone trying to fight off the tumors in my lungs, heart, brain and various lymph nodes.

A rough road but I'm grateful

I am forever grateful for these new treatment options because they helped me get to where I am today: NED. But during treatment, I felt like we were on the edge of experimentation and we didn’t really know how my body would respond and what the process would be like. It was frustrating to not really know what to expect and made it difficult to determine what was a side effect of treatment and what was just ‘normal’.

Everyone I talk to seems to have different side effects and stories. I’d love to hear your story! What do you know about Immunotherapy and how have you managed the various side effects?

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