A cancer survivor's quest to help others beat chemo brain

June 1, 2021

Swedish Wellness & Lifestyle Team

[5 MIN READ]

Cancer survivor Katie Henry still battles chemo brain, a side effect of chemotherapy.
A Swedish oncologist asked Katie to participate in a research study on the causes of chemo brain, which could eventually help prevent others from suffering from the condition.
Strategies for dealing with chemo brain include making lists, exercising and creating a peaceful environment for working and concentrating.

In late 2020, Katie Henry was diagnosed with stage III breast cancer just before her 34^th birthday. She started treatment one month later. It started with a combination of Adriamycin and Cytoxan, two powerful chemotherapy drugs. Adriamycin is also known as the “red devil” because of its distinctive color and toxicity.

She felt the effects of the treatment right away. She explains it this way: “It really fogged my brain. I don’t know how to describe it other than comparing it to being on a really crazy roller coaster that you’re expecting to end at some point, but instead of ending, it just keeps going and going and going.”

The VIBE study: Finding ways to fight the fog

Oncologist Erin Ellis, M.D., asked Katie if she’d be open to participating in the Swedish Cancer Institute’s research study, which focuses on newly diagnosed women with breast cancer who will receive chemotherapy. The “Surviving through Breast Cancer (VIBE)” study is designed to help learn about a particular side effect of chemotherapy commonly known as “chemo brain,” and to find ways to prevent it.

Because of the VIBE study and the philanthropic support that makes her research possible, Dr. Ellis hopes to spare future patients the chemo brain side effect by uncovering what causes it.

The study collects samples from study participants to analyze the presence and amount of a biological substance in the sample. This information will be gathered from patients throughout treatment. Researchers will also perform neurocognitive testing. Because of the VIBE study and the philanthropic support that makes her research possible, Dr. Ellis hopes to spare future patients the chemo brain side effect by uncovering what causes it.

Katie didn’t hesitate to agree to be a part of the research that could benefit others. “I don’t want anyone else to have to go through this,” she says. “If I can help in any way, no matter how small, I will.”

Younger women, in general, feel the side effects of chemo somewhat more intensely.

Dr. Ellis is grateful to all the women who are participating in the VIBE study — and the philanthropic support that is making her research possible — but Katie’s age made her contribution especially notable. “Younger women, in general, feel the side effects of chemo somewhat more intensely,” Dr. Ellis says. “They tolerate it fine, but it can be a harsher experience than for someone in, say, their 60s.”

The background on chemo brain

In the 1990s, women began to report having cognitive problems after having high-dose chemotherapy. Women coined the apt term “chemo brain.” At the time, doctors didn't know how chemotherapy affects the brain.

Chemo medicines cross what they call the “blood-brain barrier.” That means these drugs may cause inflammation or be toxic to the brain.

Now they realize that certain chemo medicines do cross what they call the “blood-brain barrier.” That means these drugs may cause inflammation or be toxic to the brain. Unfortunately, radiation treatment, surgery and hormone therapy may also cause negative reactions in the brain.

The cancer-chemo brain connection

What causes chemo brain? Various studies suggest chemo brain symptoms may begin before cancer treatment even starts. Since a cancer diagnosis often leads to stress and depression, that can cloud the mind. Then the treatments may make the condition worse.

Inflammation, which damages the brain stem cells, can cause shrinking in the areas of the brain that deal with memory and learning.

Researchers have discovered that chemotherapy causes inflammation, which damages the brain stem cells that would have become neurons that create and store memories. This can cause shrinking in the areas of the brain that deal with memory and learning. Sleep problems and anxiety can also add to the onset or advance of chemo brain in people with cancer. Some studies show that high anxiety and depression before undergoing cancer treatment are tied to low cognitive performance.

The “never-ending rollercoaster” – symptoms of chemo brain

It’s hard to predict if chemo brain will linger after treatment. For some people, it may go away once cancer therapies are over. On the other hand, some people deal with cognitive challenges for months after treatment before they get back to normal. Sadly, others don’t fully recover from the condition. Everyone who experiences chemo brain deals with some or all of these symptoms:

Trouble concentrating
Problems recalling words
Less mental clarity
Reduced attention span
Needing more time to finish everyday tasks
Trouble with visual or verbal memory
Increased confusion

Strategies for coping with chemo brain

One of Katie’s memory strategies is making lists. She explains, “I write everything down. If it doesn't go in my calendar or if it doesn't get written down, it does not happen.” Katie has the right idea for coping with chemo brain.

Here are a few other tips from Cancer Care, a leading national organization that helps people manage the emotional, practical and financial challenges of cancer.

Track your info all in one place. Use a notebook, daily planner or smartphone to manage your to-do lists, appointments, telephone numbers, medicine schedules and other important information.
Make a checklist. Put daily reminders where you’ll be sure to see them, such as on your refrigerator or bathroom mirror.
Get your rest. A good night’s sleep will give you more energy and clarity for the day ahead. Try to fit in short power naps, too.
Move for your memory. Get regular physical activity to improve blood flow to your brain.
Keep your mind moving, too. Crossword puzzles, Sudoku or a fun class that teaches you something new can help keep your mind engaged.
Pay attention. You can train yourself to focus by slowing down, picturing what you’re doing and describing it out loud to yourself. These are visual and audio cues that help boost your memory.
Create a quiet place. An uncluttered, peaceful place to work, read and think can help you concentrate better and have better recall.
Organize your space. Designate places for your personal items so you’ll always know where they are. For instance, put your keys in a bowl by the front door.
Use mnemonics. It’s a hard word to say, but it sure makes things easier to remember. Mnemonics are strategies that use a silly phrase, image or rhyme to jog your memory.
Chew gum. And blow a few bubbles while you’re at! Research shows that chewing gum can keep you more alert and improve attention and memory.

Celebrate cancer survivors every day

Chemo brain is just one of the ongoing challenges of cancer survivorship. We recognize that people like Katie, who’s now cancer-free, are still facing months or years of recovery even after clean scans.

Let’s applaud Katie and other survivors. Let’s support them at home and on the job. And let’s show them how much they inspire us with their courage in the face of a devastating disease, every single day.

An ongoing battle

Chemo brain is just one of the ongoing challenges of cancer survivorship. People like Katie, who’s now cancer-free, are still facing months or years of recovery even after clean scans. Providing them with support and encouragement at home and on the job can help ease their journey.

Find a doctor

If you have questions about chemotherapy or cancer treatment, contact the Swedish Cancer Institute. We can accommodate both in-person and virtual visits.

Whether you require an in-person visit or want to consult a doctor virtually, you have options. Swedish Virtual Care connects you face-to-face with a nurse practitioner who can review your symptoms, provide instruction and follow up as needed. If you need to find a doctor, you can use our provider directory.

Join our Patient and Family Advisory Council.