A week and a half before my chemo began, I had a 90-minute one-on-one teaching session with a nurse practitioner named Jen from my colorectal oncologist’s office.
First of all: I thought that was incredibly cool. Ninety minutes of chemo and risk reduction education? Sign me up! I love to nerd out. Not exactly my first choice in learning material, but here we are.
(Side note: this team is now running the show since rectal cancer is the higher-stage cancer. We already did the highest-risk mitigation possible for the breast cancer — a mastectomy — so now we focus on the next thing.)
The appointment walked me through exactly what happens on infusion day and what side effects I might experience throughout the roughly 3.5 month course of treatment.
So let’s break it down.
Infusion Day: The Game Plan
Since I have two cancers, I need two treatments: Herceptin (which targets any remaining HER2+ cells that may still be circulating in my body from the breast cancer) and FOLFOX, which targets the rectal cancer.
I will do 6-7 rounds of FOLFOX starting March 10, 2025. It will be administered every other week. This should be completed by the end of May (fingers crossed).
I will do Herceptin for one year starting the same date.
Each chemo day starts with the Herceptin infusion. That infusion takes about 60–90 minutes.
After the Herceptin is done, we move to the FOLFOX infusion, which is a cocktail of three meds + chemos used to treat the rectal cancer:
- Leucovorin – IV infusion
- Oxaliplatin – IV infusion
- 5-FU (fluorouracil) – IV push
After those are administered on infusion day, I go home connected to a portable pump of 5-FU that slowly infuses into my system for 46 hours.
Then I return to the treatment center to:
- flush the line
- disconnect the pump
- close the port
Because my hemoglobin and other anemia indicators have been dropping, we added iron infusions once per week for three weeks.
Which means my first two Herceptin/FOLFOX chemo cycles will be 6–7 hour infusion days.
Epic.
Herceptin Side Effects
The good news: very minimal side effects for most people.
Possible issues:
- Slight (~2%) chance of decreased heart function
Mitigation plan:
- Baseline echocardiogram (already done and cleared to go)
- Repeat echos every 2–3 months
If anything looks off, they simply pause treatment until the heart function rebounds.
FOLFOX Side Effects (and How We Manage Them)
Below are the most common side effects. I’ve put them in what I understand to be the rough order of likelihood, though my team was very clear that everyone responds differently.
What is likely, though, is that my side effects will be cyclical and cumulative.
The cycle should look something like this:
- Day 1 (Infusion Day) – Day 2: Pretty okay
- Day 3–5: Crap
- Day 6–7: Getting better
- Day 8–13: Back to “normal”
The goal during the first round is to figure out what my cycle looks like, so I know what to expect in future rounds.
As treatment continues, the side effects will likely become cumulative, which means things may get a bit more gnarly in the later cycles.
That said, my team also told me:
“As far as chemos go, this one’s not so bad.”
“It won’t be easy, but it should be manageable.”
So, here’s what we’re looking at:
Low White Blood Cells (Infection Risk)
Mitigation:
- Full blood panel before every infusion.
- If counts are too low → treatment is delayed.
My oncologist already told me there’s about a 50% chance I will get sent home at least once. I love the expectation management… but you bet your ass I’ll do my best to not let that happen.
Other precautions:
- Wash hands
- Avoid sick people
- Mask in higher-risk environments
- Yes, I can still go to the gym (if my energy returns – just wipe the equipment before and after because Jen doesn’t trust people and neither do I.)
Low Hemoglobin (Anemia)
Mitigation:
- Monitored through the same bloodwork
- Iron infusions to bring levels back up
Symptoms to report:
- Shortness of breath
- Dizziness
- Elevated heart rate
(I’m already mildly anemic but we caught it early – because I reported these exact symptoms to them – which is why I’m already getting iron. Love them. Love me too?!)
Low Platelets (Bleeding Risk)
Mitigation:
- Bloodwork monitoring
Lifestyle tweaks:
- Brush teeth gently
- Use clippers instead of razors
- Don’t blow your nose too hard.
You know… sweet, sweet common sense.
Nausea or Vomiting
Mitigation:
- Take the anti-nausea meds they prescribe
- Drink water
- Eat small meals
- Stick to boring foods (BRAT diet)
- Avoid strong smells
- Don’t lie down immediately after eating
Again: sweet, sweet common sense.
Diarrhea
Mitigation:
- Low-residue diet
- Avoid lactose, spicy food, fried food, and gas-producing foods
- Take Imodium if needed
Again: you get it…
Cold Sensitivity
(Specific to Oxaliplatin)
This one is weird and very specific, and honestly I think it’s cool AF because I love bodies and this is so strange.
Cold sensitivity can start immediately during infusion and last 3–7 days after treatment.
Mitigation:
- Avoid cold air
- Wear scarves, gloves, hats
- Avoid cold drinks and ice
- Wear gloves when taking things out of the refrigerator (?!)
- Use room-temperature water
You can also do something kinda whack during infusion:
Ice your hands and feet the entire time Oxaliplatin is administered – approx 2 hours.
I bought special gloves and booties that hold ice packs which I swap out every ~20 minutes.
It’s similar to cold capping, which people sometimes do to prevent hair loss with certain chemo drugs.
And in a great example of “you never know what you’re training for”… (more on that to come…)
All those cold plunges I did last fall and winter are suddenly paying off in ways I could have never imagined.
Neuropathy
This was the one that made me say, out loud:
“Well that’s not going to be okay at all.”
Neuropathy can cause tingling or numbness in the hands and feet, and in rare cases it can become permanent.
Mitigation:
- Same icing protocol as above
- Report tingling immediately
If I tell my care team early enough, they can adjust dosing to reduce risk because, frankly, fuck this one. I like to move my body and I like to type.
Fatigue
(Yes. Obviously.)
Mitigation:
- Sleep
- Rest
- Stay active
- Hydrate
- Eat well
- Accept help from friends and family (cough cough)
Also recommended:
- meditation
- journaling
- yoga
- guided imagery
You know.
All the stuff I teach and don’t always do.
Sun Sensitivity
Mitigation:
- Wear sunscreen
- Wear hats
- Avoid excessive sun exposure
Once again: sweet, sweet common sense.
Hand-Foot Syndrome
Symptoms:
- Pain
- Redness
- Peeling skin on hands and feet
Mitigation:
- Moisturize constantly
- Avoid very hot water
- Wear comfortable shoes
- Lotion + socks/gloves at night
Mouth Sores (Rare)
Mitigation:
- Rinse with baking soda + water
- Brush gently
- Avoid acidic foods
- Avoid alcohol and tobacco (Which… we probably shouldn’t be doing anyway…)
Very Rare Side Effects
These include:
- interstitial lung disease
- allergic reactions
- heart toxicity
- cardiomyopathy
- dihydropyrimidine dehydrogenase deficiency (inability to metabolize certain chemo drugs – I’ve already been tested for this and am good to go)
Let’s talk about sex, baby.
And finally — because I like to be thoroughly prepared for everything — yes:
You can have sex while receiving FOLFOX as long as you follow some basic sex ed-style precautions.
(Hey, look man, it’s been a while but it doesn’t mean that streak isn’t going to be broken in the next four months. You never know who you’ll meet hooked up to some other toxin.)
Jen covered all the deets.
Points for thoroughness, Jen.
But then Jen said I couldn’t have sushi during treatment and I almost threw my notebook across the room.
Bad answer, Jen.
Final Thoughts
So overall?
The side effects are pretty manageable, and my care team wants me to report absolutely everything.
They may eventually regret that policy.
Because they are now dealing with:
- a trauma-informed yoga therapist
- a professional body-awareness nerd
- someone who notices every tiny sensation
But hey.
Their rules.
Heading into chemo, I’ve done everything I can to prepare.
We can’t prevent side effects entirely.
But as we say at O2X:
We can always work on risk reduction.
And between my medical team, my emergency-management-trained ex-husband, my firefighter brother, and my lifelong relationship with trauma and anxiety…
Let’s just say:
I am extremely prepared.
You’re shocked, I’m sure.
All that’s left to do now is see how it plays out.
(And this is the “letting go” part, which is not exactly my specialty…)
1 Comment
What about veggie sushi? Plus, crab has to be cooked before eating and it’s *super* mild. BRAT has almost the same letters as CRAB.