Tracking Chemotherapy Side Effects

Once you start chemotherapy, it’s important to talk to your doctors about your side effects. Problem is, it’s not always easy to remember which symptoms you’ve experienced when those side effects include fatigue and mental fogginess (“chemo brain”).

That’s where symptom tracking comes in. Some hospitals and cancer centers offer electronic symptom tracking tools in the form of online worksheets or smartphone apps, which can also alert your team if your responses indicate a severe or worsening symptom. But trackers don’t have to be high tech to be helpful, stresses Deanna Attai, MD, a surgical oncologist at the UCLA Jonsson Comprehensive Cancer Center.

“Just jotting down how you feel each day and sharing that information with your doctor at visits is extremely helpful,” says Dr. Attai. “He or she can help you manage your symptoms and also help prevent them from becoming more serious.”

How Tracking Your Symptoms Can Improve Your Treatment

Monitoring your chemo symptoms — and relating that information to your healthcare team — will help your doctors adjust your treatment to ease the side effects. For example, they could add or change — alter the dose or timing of — a medication or refer you to other clinicians. By catching issues early, they can also help head off more serious problems, such as severe dehydration or an infection that could interrupt your treatment or, worse, cause you to end up in urgent care or the ER.

Research suggests that people who monitor their side effects during chemotherapy feel better, have fewer complications, and enjoy better treatment outcomes than those who don’t keep track. In one study published in February 2016 in the Journal of Clinical Oncology, people undergoing chemotherapy for metastatic cancer who used a symptom tracking app (designed to alert a nurse if symptoms became serious) experienced a significantly higher quality of life, made fewer visits to the ER, and stayed on chemotherapy longer than those who were not given any type of symptom tracking tool. A follow-up report published in July 2017 in The Journal of the American Medical Association also found that the people who used the tracker lived an average of five months longer than the control group.

Tracking your reactions to your cancer treatment can also have a positive psychological impact, says Attai. “A cancer diagnosis and the treatments that go along with it can rip away any sense of control you might have had,” she explains. “Symptom tracking can help you feel more in control over your disease and treatment. It’s one small way in which you can feel you are taking charge.”

Symptom Tracking Made Simple

When you’re undergoing chemotherapy, keeping a daily log of your side effects and their severity may sound like yet another chore on your to-do list when you’re already feeling maxed out.) But once you get started, the process can be quick and painless. Here’s how to set yourself up for success.

1. Learn which side effects you’re likely to experience.

Before treatment begins, sit down with your doctor or oncology nurse and make sure you understand which drugs you will be receiving, the side effects you can expect, and what you can do to feel better. Also, ask which symptoms are worrisome and when you should call about new or changing symptoms.

2. Know who to call

Find out how to get in touch with your healthcare team if you have concerns after you go home — both during business hours and after hours. Also ask if the procedure is different for routine concerns versus emergency issues.

3. Find the right format

Some cancer centers offer online or app-based monitoring tools. If yours doesn’t, or you’re just not the techy type, it’s fine to go old school. “The format doesn’t really matter,” says Attai. “The best symptom tracker is the one that is used.”

The American Cancer Society offers a free printable chemotherapy symptom worksheet that’s as simple to fill out as checking boxes. Or you can just use a plain old pen and notebook. Each day, record:

  • any symptoms you’re experiencing
  • the severity of your symptoms (e.g., mild, moderate, or severe or on a scale of 1–5)
  • what medications, if any, you took and how the medication helped (or did not help) with the symptoms
  • what you ate
  • how you slept
  • any questions you have about your treatment

4. Bring your tracker with you to your appointments

This will make it easy to go over symptoms with your healthcare team and discuss the best ways to mitigate or manage them. An added perk: You’ll be a lot less likely to walk out of your doctor’s office with that nagging feeling that you forgot to mention something important.

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