Chemo Side Effects: Expectations vs. Reality

In my last post about my First Drip, I shared why I believe the way we think can change how we experience treatment. I want to start here again, because sometimes worrying about side effects can feel worse than the side effects themselves. The mind loves to predict. It tries to protect us by imagining every possible problem, and suddenly we’re bracing for monsters that may never show up.

Please, of course, do your hospital’s education sessions. They are mandatory for a reason, but they can be overwhelming. I remember sitting there thinking, WTF… while they went through every possible complication. They have to cover it all. And still, a lot of it never happened to me.

This post is my personal experience on a triple-negative protocol (Keynote-522). There are many more chemo drugs and combinations. Bodies react differently. I’m sharing my very personal path to give context and calm, not to predict what yours will look like.

TC block (weekly, the first 3 months)

In simple words: this combo targets fast-dividing cells and damages cancer cells’ ability to repair themselves.

What I expected: numb fingers and toes, nail issues, bone aches, mouth sores, constant fatigue, taste changes that ruin everything.

What actually showed up for me:

• Energy in waves. Especially in the beginning, the first two or three days after infusion I always felt a bit down. It was a strange state, almost like being high on something that's not fun.😆 But then, as the days passed, my energy came back. And when it did, I went straight to the gym. That rhythm of low → rebound became predictable and gave me something to hold onto.

• Gut changes. Right after treatment I often had diarrhea, but then three or four days later it shifted into the other direction. Annoying, yes, but very manageable. What helped me most were psyllium husks and really upping hydration. And of course, there are medications if needed, stool softeners, laxatives, whatever is needed.

• Appetite shifts. I didn’t lose my appetite completely, but it changed. I couldn’t eat as much protein as I wanted and often craved carbs, partly from the steroids. I followed those cravings, but tried to keep them whole-food based: I ate a lot of boiled potatoe sin that time haha.

• Taste & smell. Towards the end, water started tasting and even smelling metallic to me. Even standing at the ocean, the air felt metallic in my nose. Other than that food and drinks tasted good, for which I was insanely thankful for. :)

• Skin sensitivity. One of the most consistent side effects across my treatment was how reactive my skin became, especially to sunlight. Even a short walk outside could leave me with tiny pustules, a rash, or sudden redness on my face. My face felt more fragile than ever. I had to be extremely careful, avoiding direct sun and using high-quality SPF every single day. (I’ll share more about skin care during treatment in a separate post, but for now my biggest advice: take this seriously and protect your skin.)

• Mouth care. I was prepared for a mouth full of blisters. In reality, I only had the occasional small sore on my tongue, and it healed quickly. I did supplement zinc for wound healing and immune support, which may have helped.
  

If you’re about to start TC: hydrate, note how you feel in a journal, and tell your nurses early if anything new turns up. Small tweaks helped more than big overhauls.

Different chemos, different versions of myself. Always somehow trying to stay positive!

AC block (every 3 weeks, the last 3 months)

In simple words: this block combines Adriamycin (a bright red drug) and Cyclophosphamide, a very effective pair that hits fast-dividing cells hard.

What I expected: Everyone online seemed to call AC the “harder block.” The nicknames, especially Red Devil, had me terrified. I pictured weeks of being bed-bound, vomiting and everything falling apart.

What actually showed up for me:

• Different, not necessarily harder. For me, AC wasn’t the monster I expected. It wasn’t automatically “worse” than TC, it was just different. Some people find AC harder, some find TC harder. My experience sat somewhere in between.

• Nausea. The biggest new symptom for me was nausea. It was heavy and would sit in my stomach for days. Luckily I never had to vomit tho. Medication helped, but pacing myself, small meals, and just accepting the slower rhythm made the biggest difference.

• Fatigue. The crash after AC infusions hit harder than with TC. The heaviness was deeper and longer-lasting. Still, after three, sometimes four days, I would catch myself again and once the energy returned, I went back to the gym. Working out through treatment was the best medicine for me and helped me cope with side effects!

• Gut changes. Ongoing: Diarrhea and constipation in a wild mix. :)

  
  

The Red Devil myth. Adriamycin is bright red, which is why people gave it that nickname. That’s it. Not because it’s the devil, not because it will destroy you. The name alone nearly broke me before I even had my first infusion. In reality, it was intense, yes, but manageable, and nowhere near the nightmare I had in my head.

If you’re heading into AC:

• Trust your anti-nausea plan and speak up if it’s not enough.

• Keep easy digestible, nutritious food close, whatever sits best with you.

• Remember: names and labels don’t define your experience.
  

Immunotherapy (Ongoing)

Immunotherapy works differently than chemo. Instead of attacking cells directly, it helps the immune system recognise and attack cancer cells. Sometimes, though, it can overshoot and make the immune system a little too active.

Typical side effects can feel like flu: fever, chills, muscle aches, even thyroid changes that only show up in bloodwork.

For me, because I received immunotherapy in combination with chemo before surgery, it was often hard to tell what caused what. The whole cocktail was mixed together. Later, after surgery, when I had immunotherapy on its own, I could feel its pattern more clearly. It was less of the immediate “chemo hit” and more about steady monitoring, subtle shifts, and making sure I flagged new things early. And yes: sometimes it really did feel like a mini flu for a day or two. No runny nose, but the fever and body chills were real.

Chemo Brain

If I had to name one of the toughest side effects of all, it would be chemo brain. The memory loss, the brain fog, the feeling of not being myself. I sometimes forgot names, I couldn’t trust my own short-term memory, and my focus was fractured. Even more painful was realising that I couldn’t speak or express myself the way I wanted anymore. Words slipped away, sentences felt jumbled. For someone who always relied on clear communication, that was devastating.

This brain fog was one of the reasons I couldn’t imagine starting a new job during treatment. It stripped away confidence and independence and personal expression in ways I didn't expect. And while the body often recovers faster, the mind takes longer. For me, it was one of the heaviest weights to carry.

When to Go to the ED

Obviously this is the part I wish would never happen to anyone. At first, even I thought, “Really, the emergency department? That's a bit extreme.” But the truth is, during treatment it can become part of the reality. I personally ended up in the ED about two times during chemo because of high fever and an allergic reaction to a chemo drug, and once after surgery because of seroma in my left thigh.

From day one, the rule from my hospital was clear: any fever of 38°C (100.4°F) or higher = straight to the ER. No waiting it out, no googling, no “maybe tomorrow.” With a suppressed immune system, hesitation can be really dangerous.

It’s stressful and annoying, yes. But the staff know exactly what to do, and they take chemo patients seriously. Better safe than sorry, it’s always better to go one time too many than one time too few.

Final Thoughts

Chemo side effects are as individual as fingerprints. Some will come, some will never appear, and almost none of them look exactly like the stories you’ve read online.

If there’s one thing I hope you take away, it’s that your body can handle more than you think, and often the scariest parts live in our imagination before treatment even begins. I know I came through it in a way that many would call “lucky”, being fit, active, and mindful beforehand helped me more than I realised.

Others may face harder battles, and I want to acknowledge that too.

If you’re walking into this journey, know that you are not powerless. You can prepare, you can lean on your care team, and you can trust that the brain fog, the energy crashes, the nausea, they all pass. Your body is a wonder, and you are still you, even on the hardest days.

In my next posts, I’ll go deeper into specific topics like hair & scalp cooling, working out, mouth care, and the role of supplements. If you’d like to follow along, hit subscribe so you don’t miss them. 🌼