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What Does Immunotherapy Feel Like?

I am currently on my 6th immunotherapy treatment and have 8 months (1 treatment per month) to go. The specific immunotherapy drug I am on is Opdivo aka Nivolumab.

What is Opdivo (nivolumab)?

“A checkpoint inhibitor, a type of immunotherapy that helps make cancer cells more vulnerable to attack by your body’s own immune system. Nivolumab triggers your immune system’s response to melanoma by blocking the PD-1 protein on T cells. The drug activates T cells so that they can attack melanoma cells anywhere in your body.”1

Prepping for my immunotherapy treatment

A few days before my treatment I have to get a blood test, just to assess that all my levels are fine, and the treatment isn’t having a negative impact on anything. The morning of the treatment I have to take 2 different oral antihistamines because the first 4 treatments I had a bad reaction (during the treatment) so the antihistamines help keep that in check. My reactions varied from tightness in the chest, chest pain, fever, dizziness, and breathing difficulty.

Have you experienced...

Once I arrive, they check my heart rate, my blood pressure, and my weight. I then have to go for a quick run and they check my heart rate again. Then I see my oncologist and they check my blood test results and ask me a long list of questions about any potential side effects some of which include:

Then I go into the treatment room, it’s a large cold room with heaps of reclining chairs about 2 meters apart from each other and a nurse’s station in the middle. I sit down and a friendly nurse asks me an even longer list of potential side effects, checks that I haven’t had any new allergies, and double-checks my name and date of birth. They then put a cannula into a vein in my arm or my hand (I have difficult veins so sometimes they have to use my hand). Then they administer another MUCH stronger antihistamine directly into my veins.

What does immunotherapy feel like?

They then offer me a blanket, tea, water, or snacks and I settle in and make myself comfortable. About 20 mins later they come back and check my name and date of birth again and then administer the Nivolumab through my drip, it’s not painful and I don’t feel anything. For most people it takes about 30 minutes – 1hr for the whole drug to go through the drip, however, mine has to be administered very slowly because of my reactions, so it can take me 2 – 2.5 hours. About 10 minutes into the treatment I start to get extremely sleepy. The type of antihistamines I am given basically knock me out, so I usually doze in and out the whole time.

Once the nivolumab is finished they run some saline solution through my drip for a few minutes.

That’s it. It’s a pretty painless process, unless I have a bad reaction (which is rare for most people) then it can be quite scary in the moment, but they get it under control very quickly.

Distractions from my thoughts

Overall the treatment isn’t scary, the real fear is being alone with your thoughts. So once I knew that I took measures to keep mentally strong. At first, I would catch myself thinking a lot about cancer during this process, it’s very hard not to. So it’s important for me to bring things to distract me. Usually, I chat to my mum who comes with me or listen to podcasts. I don’t want to allow my mind to wander, because that’s when fear and negative thoughts creep in.

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