Immuno-WHAT?

When I was first diagnosed with Stage IV Melanoma (and having a mother who is a breast cancer survivor), all the terrible, terrible “cancer” terms came to mind. Radiation, surgery, chemotherapy, etc. and I assumed the worst (naturally).


One of the reasons I was referred to Mayo Clinic for my treatment is because of all of their advancements in treating Melanoma specifically. One big term I was unfamiliar with (but quickly learned a lot about) was “Immunotherapy.” Let me first start by saying I am nowhere near a medical professional – but am simply just telling you my experience.


Immunotherapy vs. Chemotherapy

Immunotherapy is a treatment option that uses the body’s own immune system to help fight off cancer. These drugs essentially release the breaks off my own immune system and begin to attack the cancer. “Traditional” chemotherapy (as I call it 😉) is a treatment that uses drugs to kill the cancer. What I also learned is that Melanoma, specifically, can be resistant to chemo. My doctor says we’re going for cure, so we opted for Immunotherapy treatment.


You’re probably asking what the potential side effects of Immunotherapy are compared to Chemotherapy (I was too). Instead of hair loss and all the other typical side effects that come with Chemotherapy, mine would likely be a little different. I got to keep my hair (yay!), but since my immune system would be going into over drive, it was possible that it could begin to attack the healthy tissue/organs in my body as well. My doctor told me my toxicity levels were going to be about 55% meaning I had about a 50% chance of being hospitalized while I was going through treatment. The biggest side effect that’d I’d likely experience is fatigue. My immune system would be taking all my energy and I’d be tired. But, Immunotherapy can be a slower plan than Chemotherapy and I’d likely not notice any difference until a couple months in.


My Treatment Experience (to date)

My first infusion was with a combination of immunotherapy drugs to jump start my immune system. The plan was to have 4 cycles (every 3 weeks) of an infusions of both Ipilimumab (Yervoy) and Nivolumab (Opdivo) to get things going, then Ipilimumab would fall off and I’d get a higher dose of Nivolumab to continue the progress. Since those are such mouthfuls to say, we call them Ipi and Nivo! Basically, we needed an extra boost to help drive the car up hill and once we got to the top, we could coast the rest of the way.


Well, I only needed one infusion of the combination drugs because I ended up being hospitalized for 9 days with what we can only define as a severe reaction to the drugs. I had a horrible fever, cough and headache that wouldn’t go away. It might sound like a simple head cold, but I assure you it wasn’t 😉 After TONS of tests (details on the hospital visit here), I was released and had scans to prove that my treatment was working and my tumors were shrinking.


I started a new treatment plan of infusions of just the Nivo and have managed to stay out of the hospital. I continue to have some gnarly arthritic pain (back, knee, and hand pain) but am managing it pretty well with a low-dose steroid.


I don’t feel or look sick.

I think that’s the strangest part of it all. After recovering from my lengthy hospital stay, I feel (and look) relatively normal. I don’t look like a “normal” cancer patient at all. Somehow, my body is going to war on my behalf and here I am just doing my normal daily things. Here’s the thing – you can’t always see cancer.


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