Unexpected side effects of chemotherapy

Andi
4 min readApr 24, 2018
After I’d been de-ported.

From July to October of 2015, I received Taxotere (Docetaxel) and Carboplatin chemotherapy for breast cancer. Because my cancer was HER2/neu positive, I also received Herceptin (Trastuzumab) from July 2015 to July 2016. This combo of Taxotere, Carboplatin and Herceptin is frequently shortened to TCH. These three drugs were administered intravenously through a port-a-cath, or port, a device that was implanted under the skin of my chest for the entire year. The catheter was inserted into my jugular vein, allowing the drugs to be administered pretty much directly into my heart. Today, the scar and the hollowed-out spot in my chest where my port used to live are constant reminders of my experience.

Because my cancer was estrogen and progesterone positive, I also received a hormone suppressor called Tamoxifen in pill form. I was only on it for 2 months. Two months of violent night sweats and mood swings, sleeplessness, poor brain function and reduced sex drive. I couldn’t tolerate it. Tamox is evil. The side effects continued for another two months after I stopped taking it.

Baldness and nausea are pretty commonly known side effects of chemotherapy. There are plenty of other lesser known side effects that are concerning, surprising or just annoying. I’ve been doing a lousy job of keeping track of my experiences with the unexpected side effects of chemo in my head, so this post is where I’ll keep a running tally of them as they crop up.

Side Effects I Experience Now (almost 3 years post-chemo)

Orthostatic hypotension — I often get very lightheaded when standing up from a crouching or kneeling position. Never happened before chemo.

Mrs. Magoo — My vision has been getting worse more quickly since chemo.

Tooth decay — After having very healthy strong teeth for most of my life, post-chemo, I’ve had more cavities and required my first root canal and crown. No it is not just age!

Cysts — As if chemo wasn’t awful enough, just a couple weeks before my final treatment, a bean-sized bump developed in my groin. When you’re prone to cancer, everything is a potential freakout. The bump played hide and seek there for a year and nine months before my breast surgeon (!!) was kind enough to surgically remove it and pronounce it a sebaceous cyst. Others have made appearances since. Lucky me.

UPDATE: Chronic kidney disease — in August 2019, after a spate of what I thought were urinary tract infections, I learned that chemotherapy (specifically carboplatin) had damaged my kidneys and given me chronic kidney disease (CKD)… back in 2015. I’d had CKD ever since, and none of my medical team told me until the UTIs, when I was informed that I couldn’t be given Macrobid (a UTI medication contraindicated in patients with CKD.) Initially diagnosed as stage 3A, with more in depth testing in 2020 it was downgraded to “early stage 2 chronic kidney disease.” This is permanent kidney damage.

Side Effects I’m Grateful Not to Have Experienced

Heart failure — I received an echocardiogram every 3 months during Herceptin treatment to make sure it wasn’t breaking my heart. Literally. Thankfully, my heart is strong.

Permanent Alopecia — In a small percentage of cases with Taxotere, the hair just doesn’t come back. Holy shit that would have been a problem.

Neuropathy — Numbness, tingling and lack of sensation in the hands and feet can happen with chemotherapy, even years later. I feared this one during chemo and am incredibly thankful it hasn’t set in since.

Effects I Should Have Experienced But Didn’t

Cancer eradication — Chemo is supposed to kill cancer. For me, it didn’t. I finished Herceptin in July 2016. Five months later, the cancer had spread to the lymph nodes under my left arm. 22 nodes were removed in January 2017. Two of them were cancerous. YOU HAD ONE JOB, CHEMO.

Hair changes — Though the changes to my body, heart and mind were the things I felt the most, my changing hair was the most obvious, visble difference — and apparently an indicator of my health to everyone else. Many people told me that when my hair grew post-chemo back it would probably be a different color, or it would be thinner, or curlier, or just — different. My hair grew back pretty much exactly the same — same color, same thickness. It was healthy and strong. I got a lot of comments as it grew in about how cute it was, and how lucky I was. But the chemo didn’t work on my cancer. I had irrational suspicions as it grew back that my healthy hair was a sign that chemo had failed… It did fail, but my hair probably wasn’t a sign of that. One former coworker who went through breast cancer treatment said she was jealous of my hair. I said, “Had I known better hair was all I’d get out of chemo I would’ve skipped it completely and kept my frizz and split ends.” Now that my hair is about the length it was before cancer, everything is as it was before — including the return of frizz and split ends. I’m checked regularly to make sure the cancer hasn’t returned.

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Andi

I’m a Li-Fraumeni Syndrome genetic mutant, which means I’m susceptible to developing many different types of cancers. I dig photography and (mostly old) music.