Mesothelioma and other cancer patients often undergo potentially toxic treatments in the hopes of extending life expectancy and improving overall quality of life. Some cancer patients find that the treatment side effects can sometimes be worse than the original cancer symptoms themselves. Studies have found that cancer patients often see a decrease in quality of life after starting treatment because of how their body reacts both during and after treatment on a number of levels including physical, mental and emotional.
Patients will experience different side effects depending on their personalized treatment plan, and each individual may have a unique reaction to their treatments. As side effects may arise, patients should keep in close contact with their health care team, so they can recommend treatments, lifestyle changes or possibly different doses to improve quality of life and lessen the severity of these side effects.
Chemo brain, also referred to as cognitive impairment or cognitive dysfunction, is one of the most common side effects cancer patients experience. Patients report having difficulty remembering things after chemotherapy, though patients who have undergone radiation and other treatments have also noted similar symptoms. A number of factors can influence brain function for cancer patients like their age, nutrition, other illnesses or infection, as well as other symptoms or side effects from treatment.
The effects of chemo brain can vary. Patients have reported forgetting common words, having difficulty concentrating and multitasking, memory lapses and taking longer to complete even simple tasks in everyday life. When these effects start, how long they last and the severity of these problems can vary widely by patient. For some patients, chemo brain symptoms may be short-term memory issues, but for others the effects can be long lasting.
There is no treatment for chemo brain, but doctors have recommended some other methods to help patients cope and combat such side effects.
- Use a detailed daily planner or list: Keeping track of any appointments and important dates, as well as contacts, helpful websites and notes from meetings can help patients stay on top of all the important details.
- Keep a routine: Following a basic daily routine can help patients address everything that needs to get done without getting overwhelmed. Since multitasking can be difficult, setting up a routine to tackle one task at a time can help patients improve their focus.
- Exercise the body and mind: A healthy lifestyle and better overall health can help patients recover from the effects of chemo brain. A good diet and physical activity can combat fatigue, improve focus and also improve patient’s mood. Taking some time to do simple brain exercises, like a crossword puzzle or taking a class to gain new skills, can also help patients improve focus and memory.
- Track memory problems: In addition to keeping a planner, patients should keep note of the cognitive problems they’re facing and the context. Writing down any medications taken and the activities taking place at the time can help patients and their health team pinpoint where the memory issues may be coming from.
- Ask for help: Since chemo brain is so common, many patients try to ignore the issue and don’t properly communicate what they’re facing with their loved ones or doctor. Friends and family can help with daily tasks to help eliminate the mental drain and help the patient focus on one task at a time. Better communicating any cognitive changes or other side effects with a doctor can also ensure patients get any treatments needed and improve quality of life.
In recent years, there have also been more clinical trials around chemo brain to look into possible therapies and treatments that can improve brain function, like cognitive rehabilitation and neurofeedback.
Getting enough sleep is vital for the physical and mental health of everyone, but especially for cancer patients. For malignant mesothelioma patients, a proper night’s sleep can help combat other treatment side effects and cope with the aggressive treatment plan. Studies have found that about half of cancer patients experience sleep problems because of treatment, physical changes from having cancer or the treatment, stress and anxiety of the diagnosis or from being in the hospital.
- Pressure or pain from tumors
- Dyspnea or trouble breathing
- Gastrointestinal problems
- Bladder problems
Chemotherapy drugs, especially antimetabolites, hormone therapy and other drugs to manage side effects, like antidepressants, are all known to cause sleeplessness. With such a high incidence of sleeping problems in patients, many cancer centers have dedicated sleep centers to better monitor patients and figure out a plan to cope with this side effect of cancer therapy or the cancer itself.
Patients with sleep disorders will usually undergo regular assessments to monitor the severity and other symptoms. The assessment will include a physical exam, looking into the full medical history, medicines being taken, diet and exercise, as well as daily routines. Some patients may also undergo a polysomnogram – a sleep study that consists of multiple tests. The study may include observing eye movements, blood pressure, breathing rate, brain wave changes and heart rate to help determine the cause of the disorder.
Effective treatment for sleep disorders often entails supportive care. Cognitive behavioral therapy may be beneficial for some patients to better handle stress and anxiety that’s preventing sleep. Daily aerobic exercise such as walking can help patients maintain a normal sleep cycle. Having a nighttime routine can also make it easier to fall asleep faster, like regular bladder habits before bed, eating a high protein snack before bed and avoiding naps and caffeine later in the day. In few instances, brief usage of sleep medication may be recommended.
Hair loss or alopecia is a common side effect of cancer chemotherapy. Because the therapy has a high toxicity, patients often experience hair thinning and eventual hair loss as the treatment impacts cancer cells and healthy cells alike, including those in the hair roots. Chemotherapy treatment can cause partial or total hair loss all over the body, including the scalp, eyebrows, eyelashes and body hair. Some drugs that are used to treat mesothelioma, such as pemetrexed and most immunotherapies, cause hair loss less frequently.
Fortunately, hair loss is a temporary side effect for the majority of patients. Hair loss may begin within a few weeks of starting treatment, generally getting worse after one or two months of chemotherapy or radiation therapy. Hair often falls out during washing or brushing, though sometimes may come out in clumps more sporadically. Though not completely preventable, patients should try to wash and brush their hair less frequently and more gently to help maintain more of their hair.
Unfortunately, there aren’t many treatments available to combat the potential for hair loss. For patients who know they may begin chemotherapy, they can ask their mesothelioma doctor if a cooling cap may work in their case to prevent hair loss. Many patients instead might shave their heads preemptively or spend time finding a wig or other head coverings that they can wear instead. Patients should check their health insurance prior to paying for a wig, as some plans will partially or completely pay for one with a prescription for “cranial prosthesis.”
It will take time for patients to get used to the feeling of wearing a wig or having to wear a head covering. The most important thing is to keep soft surfaces on the scalp, which may feel sensitive and become irritated easily. When not wearing a head covering, patients should be cautious of putting on sunscreen to protect their skin.
Cachexia and Anorexia
While nausea and vomiting are common treatment side effects, some cancer patients may experience more severe complications, such as cachexia or anorexia. Cachexia is also known as a wasting disorder, as the patient often experiences severe weight loss and reduction of skeletal muscle mass. The disorder occurs when the body breaks down skeletal muscle and fat-storing tissues, making the body extremely weak and frail. Cachexia is classified as a weight loss of over 5% over the course of six months or a BMI of less than 20 along with a weight loss of around 2%.
Cachexia is most common in cancer patients with more advanced stages of disease, like stage 3 and stage 4 mesothelioma. Some reports have found at least half of cancer patients develop the disorder or can at least be classified as precachexia, where the weight loss isn’t as severe.
In recent years, there have been more studies focused on treating cachexia and better understanding its underlying cause. Some suggested treatments include:
- Various medications to stabilize food intake and weight gain, like medroxyprogesterone (MPA) and megestrol acetate
- Dietary changes to try to increase nutritional intake and healthy fats
- Monitored physical exercise to continue to promote health muscle mass
Mesothelioma patients may also develop anorexia as a result of their diagnosis and difficult treatments. Anorexia is characterized as a loss of appetite, which can lead to significant weight loss. Anorexia is commonly associated with chemotherapy and radiation, but may be a result of other cancer treatments and side effects as well.
Anorexia and weight loss can greatly implicate the immune system, causing patients to postpone or delay continued treatment. Studies have found that a weight loss of 5% or more can lead to a lower response rate to chemotherapy and worsening prognosis.
Anorexia can be treated similarly to cachexia, as the main goal is to stimulate appetite and maintain or gain weight. Patients may need to take antiemetics to help control nausea and vomiting due to treatment, and work with a nutritionist to consume higher caloric foods and have a high protein intake. Appetite stimulants, like cannabinoids and megestrol acetate, may also be administered.
Any infections or illnesses can pose a risk to mesothelioma patients, whose immune systems may be compromised during treatment. Mesothelioma and other types of cancer significantly increase a patient’s risk of experiencing complications from the flu. If left untreated, influenza can complicate ongoing treatment, lengthen hospital stays and may cause death.
For pleural mesothelioma patients, influenza can exacerbate cancer symptoms. As the lining of the lungs is affected, individuals struggle to breathe, cough and have difficulty swallowing. If an individual with mesothelioma contracts influenza, breathing can become more difficult. Coughing brought on by the flu can rupture delicate blood vessels in the lungs.
- Receive a flu vaccine every season
- Take flu antiviral drugs when prescribed
- Limit contact with those who may have been exposed to the flu
- Avoid touching the eyes, nose and mouth
- Wash hands often, especially after interactions with others
- Maintain hydration
Many influenza symptoms mimic those of mesothelioma, often making it difficult for patients to realize if they’ve contracted the illness. It is critical for mesothelioma cancer patients to note any changes in their symptoms and talk to their doctor right away.
Both men and women may experience varying issues with intimacy, even long after treatment has ended. Body image issues, early menopause, erectile dysfunction, depression, and a general loss of interest in sex are all common among cancer patients and cancer survivors.
Different treatments can cause different intimacy issues. Chemotherapy, for instance, can decrease levels of estrogen and testosterone, ultimately lowering sex drive. Chemotherapy can also cause primary ovarian insufficiency in women, which can lead to hot flashes, irregular periods and vaginal dryness. Hormone therapy can cause similar side effects in women, as well as decrease men’s sexual drive. Radiation therapy can cause erectile dysfunction and other similar issues in men, as well as low estrogen levels in women that can lead to vaginal dryness, vaginal stenosis or vaginal atrophy.
Depending on the side effect, there are a number of treatments health care professionals may recommend.
- For women, gels and creams may be recommended to stop vaginal itching, irritation and dryness. Exercises for the pelvic muscles may also be recommended to lower pain and improve bowel function and bladder control.
- Men may also be recommended various medications for erectile dysfunction. For some patients, small surgical procedures, like a penile implant, may also be suggested to improve penile function.
- Patients should discuss with their doctor any side effects that may be contributing to their intimacy issues, such as pain, fatigue, depression and hair loss. The healthcare team may be able to recommend treatments for such problems.
- Seeking support or professional counseling can also help cancer patients dealing with intimacy issues. Being open with one’s partner and loved ones about any side effects of cancer can provide a great support system and give the patient help they need, but might not feel comfortable asking for. Joining a cancer support group or going to counseling can also help patients overcome some of the mental and emotional side effects of a diagnosis and improve quality of life.
Pain is a common side effect of mesothelioma treatment, as well as the cancer itself. Abdominal or chest pain is a common symptom of malignant pleural mesothelioma and peritoneal mesothelioma, especially with tumor growth and spreading or from fluid buildup around the impacted organs (peritoneal or pleural effusion). Unfortunately, conventional treatment options like surgery and chemotherapy can also cause pain.
- Pain in joints and muscles
- Muscle spasms, stinging or itching
- Skin pain or hand-foot syndrome (burning in the palms or soles of the feet)
- Dermatitis (inflammation of the skin)
- Mouth sores or inflammation (mucositis)
- Inflammation of the mucous membranes
- Pain flares
- Peripheral neuropathy (nerve damage that can cause pain, numbness, weakness)
Some of these pains can be chronic or worsen over time if left untreated. A health care team can monitor a patient’s pain levels regularly, especially when beginning a new cancer treatment, if new pains arise or following the start of treatment to better control mesothelioma pain and other symptoms.
Along with the cancer team’s consideration, it might be helpful for patients to keep a pain journal to document the pain and be able to provide health care providers with more information to hopefully resolve the issue. Patients should make note of the following:
- Location of the pain
- Intensity (mild, moderate, severe)
- When the pain began and how long it lasts (if not chronic)
- What makes the pain better or worse
- Any changes in the pain (ie. if it’s intermittent, new locations, becoming more severe)
The cancer care team will also consider previous and ongoing cancer treatments, other symptoms or side effects being experienced, the patient’s prognosis, as well as personal and family health history to determine how to address mesothelioma pain. Most comprehensive cancer centers will also have their own palliative care and pain management centers.
Pain management solutions can entail a variety of methods, including over-the-counter or prescription drugs, nerve blocks and implants, or non-pharmaceutical methods like yoga or nutritional changes. Drugs will often be prescribed for more severe pains, and may include relievers like ibuprofen or opioids for more severe pain. In some cases, specialists will want to manage the pain without drugs or medication, especially if there is any family or personal history of drug dependence. Patients should be cautious to never change their dosage of any prescribed medications on their own and continue to discuss their pain levels and side effects with their doctor.
Palliative care, which may entail traditional mesothelioma treatments as well as more alternative treatments like acupuncture, is another option for handling mesothelioma pain and other side effects. Palliative treatment is focused on improving quality of life and alleviating symptoms from the mesothelioma itself or symptoms that arise from treatment. Many patients assume palliative care is only an option for patients with late stage disease, but these palliative treatments may be applied at any stage of disease and accompany curative treatments to reduce side effects.
Author: Linda Molinari
Editor in Chief, Mesothelioma Cancer AllianceRead about Linda
Reviewer: Dr. James Stevenson
Medical Reviewer and Thoracic Medical OncologistRead about Dr. Stevenson
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