Mesothelioma Treatment: A Guide to Chemotherapy & Your Legal Rights

In our previous article in this series, we covered the basics about chemotherapy for mesothelioma. Now it’s time to get down to what mesothelioma patients can expect from their chemotherapy experience: specifically, from systemic IV chemotherapy. This is the most common type of chemotherapy for mesothelioma patients, and refers to what most people think of when they think of “chemo”: chemotherapy drugs delivered into the bloodstream over multiple sessions, spanning several weeks or months. Mesothelioma patients may also receive other types of chemotherapy, which you can read about here.

As is often the case when it comes to mesothelioma treatment, your mileage may vary: mesothelioma patients experience chemotherapy in different ways, depending factors like overall health, mesothelioma type and staging, and treatment goals. However, there are a number of common experiences that mesothelioma patients often find helpful when starting their chemotherapy journeys.

How do I prepare for chemotherapy?

There are a number of things you can do in advance to prepare for your chemotherapy. You can continue to utilize these tips throughout your chemotherapy process.

Arrange caregiving assistance. During chemotherapy, you may need assistance with activities of daily living. Try to make arrangements for assistance in advance by asking friends or family members to help with specific tasks or care needs. You can always adjust your requests as your needs become clearer.
Get a dental checkup. Before you start chemotherapy, try to schedule an appointment with a chemotherapy-experienced dentist. They may be able to identify and address infections or other issues, reducing the risk of oral and dental side effects.
Take care of your body and mind. Prioritize reducing physical and mental stress in the days before and after your chemotherapy sessions. Focus on eating nutritious meals, drinking plenty of water, and getting a full night’s sleep.
Chemo-proof your home. Chemotherapy side effects often put mesothelioma patients at increased risk of injuring themselves. It may help to go through your house and eliminate physical risks (e.g., covering or blunting sharp corners and removing slipping hazards).
Plan for side effects and take advantage of palliative care: While you won’t know your side effects for sure until you experience them, it’s often helpful to plan for the most common effects in advance, just in case. For example, you may want to preemptively cut your hair or purchase wigs if your chemotherapy drug causes hair loss. Once you have a better sense of how chemotherapy affects you, you can and should seek palliative care to address those effects.
Prepare or arrange for meals in advance. During chemotherapy, mesothelioma patients often lack the energy to prepare meals for themselves. Many find it helpful to prepare or arrange for meal delivery in advance to make eating as easy as possible.
Stay away from people who are sick or may be sick. Remember that you will be very immunocompromised during chemo, and should therefore avoid interaction with anyone who is sick or may be sick. You may want to cancel plans that involve large crowds, especially during COVID-19 surges and cold/flu season.

What are the main steps of the chemotherapy process?

Consultation. The chemotherapy process starts with a meeting with your mesothelioma care team to discuss your chemotherapy regimen and how it fits in with your treatment goals. This is your time to address any questions and concerns; many patients find it helpful to make a list beforehand and bring it with them. It may also be helpful to bring a trusted companion to help you advocate for yourself and record important information.

During your consultation, your care team may also conduct preliminary testing or imaging. They may also install a catheter (a tube inserted into a major artery that remains in place for the duration of your chemotherapy), or a port (a round metal or plastic disk inserted under the skin). Catheters and ports make repeated chemotherapy sessions quicker, easier, and less painful to administer.

Infusions: Your chemotherapy will likely consist of several infusions, in which chemotherapy drugs are delivered into your body through an IV (or through your catheter or port). Chemotherapy infusions are generally given in hospitals, cancer centers, or other outpatient treatment centers, and do not require inpatient care. Infusions range in length, but most take several hours.

You may want to bring a companion with you to your first chemotherapy session. In addition to emotional support, they can also make sure you get home safe.

When you first come for your infusion, you may have a brief wait, as chemotherapy drugs are generally prepared to order for each patient. When your infusion is ready, a nurse will help you get settled and place all necessary lines. They may give you fluids or other premedication to help with side effects.

During infusions, you will usually be seated in a comfortable chair, attached to an IV bag of medicine which will be delivered into your body over several hours. You may want to bring your computer, phone, tablet, books, or craft projects with you to pass the time, as well as pillows and blankets in case you’d like to nap.

Post-Infusion: Once the infusion is complete, you may be kept briefly to monitor for serious adverse reactions. After treatment, make sure to get lots of rest, drink plenty of fluids, avoid people who may be sick, and eat nutritious meals if possible. Side effects may occur immediately or in the following weeks or months. It is often helpful to write down your side effects as they occur.

How often will I have to go to chemotherapy?

Most chemotherapy treatments are given in repeating cycles of 3 to 6 weeks, each consisting of several infusions, with rest periods in between. On pemetrexed and cisplatin, the most common chemotherapy combination for mesothelioma patients, infusions are given every 21 days.

After around two cycles, your mesothelioma care team will evaluate how the drug is working. If it is working, they may continue your regimen; if it isn’t working, or if there are intolerable side effects, they may adjust dosages, or switch to another drug.

What are the side effects of chemotherapy, and what can I do about them?

Chemotherapy has a large range of side effects which vary from patient to patient. Chemo works against mesothelioma by targeting rapidly multiplying cells, as are found in mesothelioma tumors. However, in the process, they may also damage healthy cells that multiply rapidly, especially in bone marrow, hair follicles, skin, and the linings of the mouth and intestines, among other areas. This is largely what causes chemotherapy side effects.

Common side effects include:

Nausea, vomiting, and G.I. upset (constipation, diarrhea)
Tips: Anti-nausea and GI medications can be administered before, during, and after treatment. You may also try complementary therapies like meditation and somatic exercises.
Mouth and throat sores (mucositis)
Tips: Brush your teeth several times a day with fluoride toothpaste, using a soft toothbrush or a sponge on a stick. Gargle with baking soda rinse (½ tsp of salt and ½ tsp of baking soda in a glass of water). Choose foods that are soft, lukewarm, and non-acidic.
Lack of appetite, taste changes, and weight loss:
Tips: Focus on high-calorie, high-protein foods, and eat 4-6 small meals a day. Experiment to find food that’s appetizing. Utilize nutrition shakes.
Fatigue, cognitive effects, and “chemo brain”: Chemotherapy often causes fatigue (abnormal exhaustion not resolved with rest), as well as “chemo brain”, cognitive changes including impaired thinking, memory, and attention, mental fogginess, and difficulty speaking clearly or finding the right words.
Tips: Consult with your care team about potential medication adjustments and check for vitamin deficiencies. Get as much healthy sleep, socialization, and exercise as possible. Stick to a daily routine, utilize memory supports (i.e., writing things down or having others remind you), and do cognitive exercises (i.e., challenging games like crossword puzzles and Wordle).
Hair loss: Some chemotherapy drugs may cause hair loss, usually starting within weeks of your first treatment, and continuing for several weeks after your last treatment. Some patients experience scalp irritation or itchiness during hair loss.
Tips: Some patients use a scalp cooling cap during infusions, which may reduce follicle damage and hair loss. Consider shaving your head early in the process to reduce itching as hair falls out.
Headaches, muscle aches, and soreness:
Tips: Pursue palliative care with your mesothelioma team. They may adjust your chemo regimen, address other underlying medical issues, or prescribe medication, nerve blocks, PT, or other pain-relief therapies.
Skin issues (e.g., dryness, itchiness, redness, discoloration, rashes, peeling, and photosensitivity):
Tips: Use sunscreen and gentle moisturizer to protect your skin. Avoid direct exposure to the sun. Use cool washcloths or colloidal oatmeal baths in lukewarm water. Ask about corticosteroids or antibiotics in severe cases,

Some side effects of chemotherapy are somewhat rarer, but can be much more serious and can cause longer-lasting and potentially permenant issues. You should always consult your mesothelioma care team about these symptoms. They include:

Peripheral neuropathy: Some chemotherapy drugs can cause nerve damage (peripheral neuropathy) that may lead to hearing loss, loss of balance, and problems seeing, hearing, or walking normally, as well as pain, burning, tingling, numbness, hot-and-cold sensitivity, and weakness in the hands and feet. For some patients, symptoms only last for a short time after treatment; for others, symptoms can last much longer and may potentially become permenant. Symptoms can also worsen over time, and chemotherapy drugs must often be adjusted to avoid doing additional nerve damage. Always inform your mesothelioma care team of you experience any of these symptoms.
Blood disorders: Chemotherapy can damage bone marrow, which is the tissue inside bones that makes new blood cells. As such, during chemotherapy, mesothelioma patients generally don’t produce enough blood cells. This can cause conditions requiring medical attention. These include:

Anemia, caused by too few red blood cells, with symptoms like fatigue, dizziness, and shortness of breath
Leukopenia, or increased chance of infection, caused by too few white blood cells.
Thrombocytopenia, caused by too few blood platelets, which can cause easy bruising or bleeding.

Your doctor will continually check your blood cell counts using tests called the complete blood count (CBC) and the platelet count. Blood cell counts usually return to normal after chemotherapy, but must be addressed if they do not do so.

Heart Problems: Some chemotherapy medications may damage the heart, causing associated cardiac problems. Older mesothelioma patients (those aged 60+) are more vulnerable to chemo-related heart issues. Your doctor should test your heart before, during, and after treatment to monitor your cardiac health.

Your doctor and your mesothelioma care team will be available to you throughout your chemotherapy journey. If you are confused or concerned about your symptoms, the course of your treatment, and the chemotherapy process in general, reach out to your care team.

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