The Good, the Bad, & the Ugly: Side Effects for TCHP Chemo

I just completed my sixth of six rounds of chemo. I’m very relieved and happy for the milestone… and simultaneously wanting to “not jinx” myself by letting down my guard (I’ll dive into that psychology another time).

For now, I’m reflecting on what a journey this has been for the last four and a half months, especially navigating the side effects for neoadjuvent (before surgery) chemotherapy treatment for Triple Positive Breast Cancer with TCHP (docetaxel or “Taxotere”; carboplatin; trastuzumab or “Herceptin”; pertuzumab “Perjeta”) protocol. This therapy (via infusion to a port in my chest) is administered every 21 days, for 6 rounds total (4.5 months).

Some side effects were able to be mitigated with medications, or by altering my diet, or by using preventive measures. Here’s the list of my personal experiences from my daily journal and how I navigated them- in order of when they showed up as a side effect.

And all in all, I experienced chemo as a big drag… however, you can do it – you can get through it- by taking it one step, [and one side effect] at a time.

  1. Weight Loss: I began losing weight as soon as I got my diagnosis in early September. The stress and anxiety were major factors, but I also immediately cut out alcohol and all added sugar. I also did a lot of research on cancer-fighting foods and ingredients to avoid like white flour, white potatoes, red & processed meats, and more (See below for resources). I was not trying to lose weight (and in fact, became concerned through my first round of chemo as I continued on that trajectory) and things seem to have stabilized as I head into round six).

  2. Nausea is the first post-chemo symptom that I experienced, and it was worst on Day 3 through Day 7 after my infusion, initially. However by Round 5 of chemo, the nausea could last as long as Day 12. I learned to really stay on top of the anti-nausea medications (Zofran and/or Compazine in my case). Initially, I avoided them because they also cause constipation, but I learned to accompany them with eating a kiwi which has the opposite effect (quite proud of myself for that food pairing). The reason the nausea doesn’t start until day three is because you’re generally given steroids for 2-3 days after an infusion to help mask the impact of the chemo. (My husband affectionately refers to the last steroid day as “Super Saturday” because I have lots of energy built up and talk quickly at this point in a cycle... and have been known to clean the entire house) Along with the nausea, I often felt dizzy, a little off-kilter, or just jittery.

    One thing that helped with some side effects, including nausea, was incorporating the Fasting-Mimicking Diet (FMD) before an infusion. I started this on Round 3 and could see a difference in all my subsequent rounds (as compared to Rounds 1 & 2, when I did not use this protocol). I’ll share more about FMD in detail in a future post.

  3. Hair Hurting & Head Goosebumps was the next side effect I felt, despite using the cooling cap. I first felt this on Round 1/Day 6; I would come to find out later that this would get progressively worse and might correlate to where I was shedding or losing hair. See later for more on actual hair loss.

  4. Metal Mouth & Mouth Sores were the next fun surprise. I had been under the false impression that this only happened with oral chemo, and I was getting my chemo by infusion. Not true! Any fast growing cells (hair, nails, mouth) are really impacted by chemotherapy. What started as a metallic taste in my mouth (Round 1/ Day 4) progressed over the next few days to a point where my gums hurt, smiling hurt, closing my lips over a fork or spoon to eat, hurt, etc (Days 6-9). In talking to others, there are two main ways to avoid this; one is to chew on ice chips during the infusion to reduce blood flow and therefore chemo to the mouth. The other is to use a glutamime rinse afterwards. I did both for rounds 2-6 and was able to eliminate 95% of this problem moving forward.

  5. Dry Skin on my fingers and lips started showing up on Round 1/Day 12. Aquaphor has been my wingman ever since- I keep tubes of it everywhere and sometimes slather it on my fingers overnight with gloves or socks on my hands. During the day, when I take a walk, I often use a pair of those thin winter gloves with tech tips- I’ll put Aquaphor on my hands, put those gloves on over it, and then I can still use my phone to listen to audiobooks or podcasts.

  6. Hair Loss started happening in Round 1/Day 19 and I have an entire post dedicated to this (there’s so much to share). I continued to shed into Round 2 and then decided to cut my hair short. As of Round 6, I’m still shedding a little bit of hair, but I also believe that some of it is already growing back. The most surprising hair loss anecdote is that as of Round 2/Day 17 I realized I had no nose hairs left, and this means a constantly drippy nose, especially when you lean forward to do anything. I have to have tissues with me all the time unless I want to have a netti pot moment.

  7. Chemo Brain came on suddenly at Round 2/ Day 4. I remember being on the phone talking with my sister, realizing I didn’t have the words to say what I was trying to say, and I couldn’t even remember what I was actually trying to say. The forgetfulness and loss of words only lasted a day or two for me each round. And I sometimes also have migraines on those two days.

  8. Toe/Finger Cramps & Neuropathy was a fun surprise at Round 2/ Day 5. I happened to stretch my feet and hands out, and got an immediate toe and finger cramp. I initially chalked it up to dehydration, but I am a pretty good water drinker and was being sure to get enough hydration through water, electrolytes, and tea. Then on Round 4/ Day 8, I experienced a little more typical neuropathy; my pointer finger and thumb lost a little bit of sensitivity and the bottom of my feet felt slightly numb. That continues to happen in subsequent rounds at approximately Day 8 and resolves by Day 14. This did contribute to me cutting myself while slicing veggies this round as I couldn’t really feel the edge of my thumb.

  9. Eyesight, Eye Twitching & Light Sensitivity started being a problem around Round 2 / Day 15. It came on sort of gradually and then all of a sudden, I realized my existing glasses weren’t strong enough. My eyes are constantly twitching, which is distracting when you’re trying to focus on something or have a conversation. In general, this seems to be worse the second week of each round, but it’s also omnipresent. My oncologist says this typically resolves after chemotherapy ends.

  10. Chemo Belly & Gut Issues have happened every single round, and seem to get worse each time. Generally on Days 5-10 I experience bloating and constipation. It’s super annoying; you can feel “full” while at the same time being quite hungry.

  11. Taste Changes did not really affect me until Round 3, Days 4-10, but it means most food tastes uninteresting and unsatisfying (it did not make me less hungry, it just meant that I was less happy with the food that I was eating). It also made water less tempting to drink- I deal with this by drinking lots of herbal teas and using my LMNT electrolytes (see below).

I found it pretty helpful to document what I was going through so I could be specific with my oncologist- she could help me determine if there were any ways to mitigate some of the side effects. It also helped me pinpoint which solutions were working from one round to the next. But mostly, It helped me have a sense of control to know what I could expect on any given day and what sort of plans I could make for self-care, activities, or work.

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Resources:

Thumbs up for the sixth of six infusions