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The battle after beating cancer: Chemo brain

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by Luminis Health

August 3, 2018
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Chemo Brain

It was finally time to celebrate. Earl Shellner had just received an honorary certificate for completing a long course of chemotherapy. This was the last big hurdle in his cancer treatment. Earl had already been through surgery and radiation to treat an aggressive form of rectal carcinoma. Now he was cancer free.

Earl sat down to write thank-you notes to friends and family who’d supported him during his struggle.  It was then that he realized something new was seriously wrong. He seemed to have forgotten how to write basic letters.

‘”I was starting on the notes and couldn’t remember how to make a cursive S and a J,” he recalls. “I had to look it up on the internet, how to make the lines and curves for those letters.”

Friends and Family May Be the First to Notice Signs

Earl didn’t understand what was happening. He spoke to his mother, who’d been staying with him during his cancer treatment. She had even more bad news. She told him it wasn’t just the alphabet he was forgetting.

“She told me I’d been telling the same stories over and over again. I’d tell a story and then 15 minutes later I’d tell it again.”

And there were other lapses. He couldn’t remember the name of a neighbor’s son who he’d known for years. When he went to brush his teeth, he couldn’t remember how to use the toothbrush.

It turns out many of Earl’s friends also noticed his brain seemed muddled. No one wanted to tell him because he’d already been through so much. He was devastated. Before his cancer diagnosis, he’d been a high-energy, multitasking restaurant manager.

“Now I didn’t want to leave the house. I didn’t want to socialize, and my mom had to take over my banking. I just couldn’t handle any of my stuff anymore,” he says.

AAMC Nurse Identifies Chemo Brain

Earl shared his concerns with his radiation oncologist, and a nurse on the team recognized the symptoms. She told him he had what’s known as cancer-related cognitive impairment or “chemo brain.”

Estimates vary but studies suggest a significant number of cancer patients who’ve undergone chemo may experience some degree of cognitive impairment.  Until recently, however, many doctors tended to dismiss the memory loss as a given side effect of treatment. Their advice was for patients to wait it out and hope the problems diminished over time.

“There is a real knowledge gap,” says Matt LeBlanc, the nurse navigator for Anne Arundel Medical Center’s Cancer Rehabilitation Center. “Chemo brain exists but it is under recognized and undertreated.”

A little over a year ago, AAMC decided to address the need directly by launching the cancer rehab program. Among other things, it offers cognitive therapy to cancer patients using techniques developed for those who’ve suffered traumatic brain injuries.

Speech Therapy Helps

Rebecca Gondak is a speech language pathologist at the center. She says many of her cancer patients arrive with significant cognitive impairments, including short-term recall and language retrieval.

“Intelligence is not affected, the problem is a patient’s ability to access intelligence,” says Gondak.

The good news is that with help, even a brain damaged by chemotherapy can form new pathways to compensate for what’s been lost says Gondak.

Earl is a perfect example. When Shellner arrived at the Cancer Rehab Center, he tested far below average for memory and word recall. Gondak began a vigorous course of treatment using a combination of exercises, strategies and tricks to teach the brain new ways to access information.

“Since people with chemo brain often have trouble with short-term memory one thing I do is teach them how to connect new information to something they are already familiar with,” says Gondak.

Gondak says many effective strategies for recall are quite simple

“Let’s say a patient parks on level 3A. How will they remember  if they’re having short-term memory loss? Well, I’ll have them think of connections to the level. Maybe they have 3 children and want an A in school. That’s 3A.”

Gondak also uses repetition and problem-solving exercises to help jump-start the brain.

Rehab Gave Earl His Life Back

After twelve sessions, Earl was thrilled with his progress. He’d jumped from the 13th percentile in cognitive function to the 79th percentile. Other patients have seen similar results.

Gondak says one of the things she finds most moving is that many of her patients are making huge leaps in memory skills even as they endure cancer treatment.

“We get a lot of patients in pain or who aren’t sleeping  and still we see improvement, ” Gondak says.

Earl says rehab has given him his life back. He’s no longer afraid to go outside or talk in public. He also continues to heed Gondak’s advice. He uses lists so he doesn’t overload his brain with too much information, he takes brain breaks and he puts essentials, like his keys and phone, in a designated place so he doesn’t lose them.

The bottom line, says Earl, is the skills he’s acquired in rehab have allowed him to function again.

“Rehab has made a tremendous difference in my life,” Earl says. “I can feel it everyday.”

Read Earl’s first-person account of his journey on the Huffington Post.

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