Coping with Chemo Brain During and After Mesothelioma Treatment | Online Support Group

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Publication Date: 09/12/2013
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Many mesothelioma patients who are receiving or have received chemotherapy report that they don’t seem to think as clearly as they used to and that their memory is not as sharp as they remember it to be.

On top of all the physical side effects of chemotherapy (nausea, fatigue, hair loss and aches/pains), feeling mentally “foggy” is yet another challenge to overcome.

Physicians call these symptoms “cognitive deficits related to chemotherapy,” but cancer patients have named it “chemo brain.”

Know the Symptoms

Chemo brain is a collection of symptoms that impact one’s ability to concentrate, remember and problem solve. These symptoms include memory loss, trouble paying attention, problems with “word-finding” and problems with managing daily activities or decision-making.

These symptoms can begin during chemotherapy treatments and can persist after treatment ends. Most cancer patients state that their symptoms resolve considerably, if not completely, within one year of completing treatment. Unfortunately, a minority of cancer survivors report that their cognitive challenges persist for years after treatment is finished.

Physicians and researchers are unsure exactly what causes chemo brain, but they have made some progress with developing strategies to help patients manage and cope with the symptoms.

Several hypotheses about the causes of chemo brain exist, including:

  • Anxiety
  • Depression
  • Hormonal fluctuations
  • Fatigue
  • Poor sleep
  • Stress
  • Medication

Neuropsychologists are sometimes consulted to evaluate patients who experience chronic chemo brain (lasting more than one year) and utilize a battery of assessment tools to provide recommendations for treatment or rehabilitation.

Minimize the Impact

Mesothelioma patients who are experiencing cognitive deficits or “chemo brain” can do a number of things to minimize the impact of those deficits on their daily function. Here are some ideas:

Make Lists

Many patients say that they are used to remembering their appointments or list of things to get done during the day. However, making a list and adding to it as needed is helpful when you can’t rely on your memory like you used to.

Avoid Distractions

When we have to focus or concentrate on a project or important conversation, try to do so in a quiet, uncluttered place with minimal distractions or conversations.

Organize Your Environment

Develop a habit of putting your things in the same place so you can find those important things (papers, keys, cellphone, purse, wallet, etc.) when you need them.

Repeat Key Information

Our memory becomes sharper if we repeat important information (like appointments and names of people you meet). If we do this in addition to writing things down, we have a better chance of remembering the information.

Keep Your Brain Sharp

Studies have shown that word games, jigsaw puzzles, reading and even exercise all help keep our brain sharp. Research with early-stage dementia patients demonstrates that challenging ourselves mentally and physically reduces the progression of dementia.

Share Your Struggles

Many patients with chemo brain are embarrassed of their forgetfulness or other symptoms of chemo brain. If we let our loved ones know, they can help us and support us. Most patients actually think that their symptoms of chemo brain are worse than they really are. Those who love us can provide a realistic appraisal of our cognitive functioning.

It is important to let your physician know about your struggles with cognitive deficits, especially if they persist past one year. There is a great deal of ongoing research on chemo brain and how to help patients manage those symptoms. If you don’t let your health care team know about your symptoms, then they can’t help you!

Questions & Answers from the September Online Support Group

We received a number of excellent questions during our September online support group. Here, we include some answers.

Q: Is it normal to experience bouts of belching after a mesothelioma surgery?

A: A number of patients may notice increased belching or hiccuping after a mesothelioma surgery. The cause of belching can vary depending upon the patient and the surgery. In the case of hiccups, researchers believe the phrenic nerve, which controls the diaphragm, becomes irritated or damaged by the tube used to help a person breathe during surgery.

Q: Can a vegetarian diet help treat mesothelioma cancer?

A: Many mesothelioma survivors say they switched to a meat-free diet after diagnosis. These survivors usually combined the dietary change with other treatment methods, including all-natural and traditional therapies.

Numerous studies are showing that people who eat plant-based diets have the lowest risk of cancer. Some researchers believe that certain compounds in meat products contribute to cancer risk in humans, while the immense amount of antioxidants present in plants helps to prevent — and sometimes even reverse — cancerous changes.

Q: How can a dietitian help someone with mesothelioma?

A: Many cancer centers throughout the country staff oncology dietitians to help cancer patients determine the right diet for their case. Throughout the course of treatment, certain foods, vitamins or minerals may need to be avoided, while other foods may be highly recommended to facilitate recovery or to curb side effects. If you need help finding an oncology dietitian, reach out to our Patient Advocates.

Q: How long is the average hospital stay for a mesothelioma surgery?

A: This will depend upon which surgery is being performed, whether any complications arise, and the overall health of the patient. The typical hospital stay for the most aggressive mesothelioma surgery, the extrapleural pneumonectomy (EPP), is 13 days.

Q: Why won’t my doctor give me a solid prognosis?

A: It can be challenging for doctors to give an accurate prognosis for mesothelioma because each patient is different and will respond to standard treatments in unique ways. In many cases, doctors see their patients surpass the average survival rate, which deters them from giving a specific prognosis to future patients because they could very well outlive that prognosis.

Doctors also know that people respond differently to prognosis figures. Some people become motivated to live beyond their given prognosis, while others become fearful and depressed. If you would like to know more about your prognosis, ask to speak to your doctor, and consider visiting our Wall of Hope to read about mesothelioma patients who are beating the odds.

Q: Does having a positive attitude help?

A: Yes. Even though cancer cannot be controlled through a positive attitude alone, striving for a hopeful or positive outlook may help mesothelioma patients feel less stressed or overwhelmed.

It is important to acknowledge all of the emotions that arise following a cancer diagnosis. What some might call “negative” feelings are completely normal, and it is important to acknowledge and process all the emotions that come up.

Some patients are told that they’ll never beat their cancer if they don’t change their attitude, and this can make some people feel responsible for their cancer. This especially isn’t the case with mesothelioma, which is caused by exposure to asbestos.

Working with a mental health counselor can help many people with mesothelioma process their experience in a healthy way, which may help some patients access a greater sense of peace about their situation.

This information was shared at the Sept. 11 online support group. Register for the next one today!