Small Cell Lung Cancer
Supportive Care
Nearly every type of cancer treatment has side effects, and these are often concerning for people being treated for small cell lung cancer (SCLC). Fortunately, you do not have to face them alone. As a result of ongoing scientific advances, your health care team is able to offer new and better ways to manage these physical and emotional effects through a set of services known as supportive care.
Some side effects are a minor annoyance, and others could be life-threatening without immediate attention (see Table 1). The symptoms and how you react to them are based on your body and the type of treatment you receive. The key is to have a plan so you know what to watch for, what to do if they happen, what is considered urgent, and when and how to inform your health care team.
Having the right mindset is important. Do not be afraid to report your symptoms. You may worry that telling your doctor about side effects means you have failed the treatment and will be taken off the drug you are on or that the dosage will be reduced. Sometimes a change in treatment or an adjustment in dosage is exactly what you need, and it can offer you a lot of relief without sacrificing the effectiveness of the treatment. Only your doctor can make that decision.
You may hesitate to “bother” your medical team with something that you think is not that important or serious enough to contact them. You are not bothering them, and side effect management is important. The goal is for you to have the best overall care available, and that includes relieving symptoms so you have a better quality of life. The sooner you contact your medical team, the sooner they can help.
Be prepared by doing the following:
- Talk with the team before treatment begins about the side effects to expect.
- Identify whom you should contact and how (phone, text, email or portal) if they occur.
- Provide as much information as you can to your health care team. Download and print a side effect tracker to help you keep track of when symptoms occur (PatientResource.com/Tracker).
Potentially Severe Side Effects
Ask your doctor whether the therapies in your treatment plan may have potentially severe side effects. If so, learn when to seek emergency care. Report symptoms immediately. Some potentially severe side effects are outlined below.
Cytokine release syndrome (CRS) is a severe immune reaction in which the body releases too many cytokines into the blood too quickly. This is called a cytokine storm, and it may also occur after treatment with some types of immunotherapy. Signs and symptoms include a fever of 100.4°F or higher, inflammation (redness and swelling), shortness of breath and severe fatigue and nausea. Sometimes, a cytokine storm may be severe or life-threatening and lead to multiple organ failure. Without swift medical treatment, CRS can be fatal.
Immune Effector Cell-associated Neurotoxicity Syndrome (ICANS) is a clinical and neuropsychiatric syndrome that can occur in the days to weeks following treatment with certain types of immunotherapy. ICANS affects a person’s nervous system. Symptoms include confusion; behavioral changes; inability to speak or understand speech; attention, thinking and memory problems; muscle weakness, muscle jerks and twitching; headaches; and seizures..
Immune-related adverse events (irAEs) are associated with certain immunotherapy drugs. They can occur if the immune system becomes overstimulated by treatment and causes inflammation in one or more organs or systems in the body (see Table 2). Some irAEs can develop rapidly, becoming severe and even life-threatening without swift medical attention. Some can be detected early during routine laboratory and imaging tests even before you can feel symptoms, which makes it crucial to stay on schedule with all medical appointments. Contact your medical team if symptoms arise between appointments.
Infection can occur as a result of a low white blood cell count (neutropenia/leukopenia) or other factors. Contact your doctor immediately – do not wait until the next day – if you have any of these symptoms: oral temperature over 100.4°F, chills or sweating; body aches, chills and fatigue with or without fever; coughing, shortness of breath or painful breathing; abdominal pain; sore throat; mouth sores; painful, swollen or reddened skin; pus or drainage from an open cut or sore; pain or burning during urination; pain or sores around the anus; or vaginal discharge or itching.
Infusion-related reactions most frequently occur with drug therapies that are given intravenously (IV) through a vein in your arm or through a port, usually soon after exposure to the drug. They may even occur on the first day of treatment. Reactions are generally mild, but can be serious or even fatal without medical intervention.
Managing Emotions
Coming to terms with a small cell lung cancer (SCLC) diagnosis is tough. You can expect to feel everything from anger and sadness to fear and anxiety. Finding trusted sources of support is crucial. At the same time, this diagnosis is emotionally difficult for your loved ones. Fortunately, help for everyone is available.
Start by exploring the lung cancer community (see Finding Community, page 3). It is a tight-knit group that is dedicated to helping anyone whose life is touched by lung cancer. Advocacy and support groups, such as GO2 for Lung Cancer, offer a variety of programs both online and in person. One-on-one counseling and buddy programs are also offered. Talking with people who have been in similar situations can help you work through your feelings.
Look for sessions for caregivers and loved ones that they can attend independently. These can be especially helpful because they may be afraid to share their feelings in front of their loved one facing cancer. An opportunity to open up with others in similar situations can be a comforting outlet and help them learn ways to better manage their fears.
Following are other suggestions for managing your emotions:
- Express your feelings. Don't keep them bottled up.
- Find ways to relax, such as meditation, yoga, walking, guided imagery, reading, journaling or spending time in nature.
- Be physically active if you can. Even a 10-minute walk is a mood lifter.
- Remind yourself that not every day has to be upbeat. It is okay to have bad days.
- Do something every day that brings you a little bit of joy.
Table 1. Some Common Physical Side Effects
| Side Effect* | Symptoms |
| Bone loss and pain | Weakened bone caused by the cancer or treatment |
| Breathing problems | Shortness of breath (dyspnea) with or without cough (may be caused by anemia, a lower-than-normal red blood cell count), upper respiratory infections |
| Bruising and bleeding | May be caused by thrombocytopenia, a lower-than-normal number of platelets in the blood |
| Chemo brain (cognitive dysfunction) | Brain fog, confusion and/or memory problems |
| Constipation | Difficulty passing stools or less frequent bowel movements compared to your usual bowel habits |
| Decreased appetite | Eating less than usual, feeling full after minimal eating, not feeling hungry |
| Diarrhea | Frequent loose or watery bowel movements that are commonly an inconvenience but can become serious if left untreated |
| Edema | Swelling caused by excess fluid in body tissues |
| Fatigue | Tiredness that is much stronger and harder to relieve than the fatigue a healthy person has (may also be caused by anemia, a lower-than-normal red blood cell count) |
| Fever | Raised body temperature that could signal an infection |
| Hair loss (alopecia) | Hair loss on the head, face and body |
| Mouth sores (oral mucositis) | Tiny sores begin in the mouth lining and become red, burn-like or ulcer-like sores; can make it difficult to eat, drink or swallow. |
| Myelosuppression | Decrease of red blood cells, white blood cells and platelets that may cause fatigue, dizziness and shortness of breath |
| Nausea and vomiting | The feeling of needing to throw up and/or throwing up |
| Neuropathy | Numbness, pain, burning sensations and tingling, usually in the hands or feet at first |
| Neutropenia/leukopenia | Low white blood cell count that increases the risk of infection |
| Pain | Pain and aches that occur in the muscles, bones, tendons, ligaments or nerves |
| Skin reactions | Rash, redness and irritation or dry, flaky or peeling skin that may itch |
| Taste changes | Cells in the mouth that are damaged by treatments sometimes may cause food to taste different (for example, giving it a metallic taste) |
*Side effects listed in alphabetical order. Talk with your doctor about what to expect.
Table 2. Immune-Related Adverse Events (irAEs)
| Body System* | irAE | Symptoms and Signs |
| Cardiovascular | Myocarditis | Chest pain, shortness of breath, leg swelling, rapid heartbeat, changes in EKG reading, impaired heart pumping function |
| Endocrine | Endocrinopathies | Hyperthyroidism, hypothyroidism, diabetes, extreme fatigue, persistent or unusual headaches, visual changes, alteration in mood, changes in menstrual cycle |
| Gastrointestinal | Colitis | Diarrhea with or without bleeding, abdominal pain or cramping, bowel perforation |
| Liver | Hepatitis | Yellow/orange-colored skin or eyes (jaundice), nausea, abdominal pain, fatigue, fever, poor appetite |
| Nervous system | Neuropathies | Numbness, tingling, pain, a burning sensation or loss of feeling in the hands or feet, sensory overload, sensory deprivation |
| Neurologic | Encephalitis | Confusion, hallucinations, seizures, changes in mood or behavior, neck stiffness, extreme sensitivity to light |
| Pulmonary/lung | Pneumonitis | Chest pain, fever, shortness of breath, unexplained cough |
| Renal/kidneys | Nephritis | Decreased urine output, blood in urine, swollen ankles, loss of appetite |
| Skin | Dermatitis | Rash, skin changes, itching, blisters, painful sores |
*Body systems listed in alphabetical order. Talk to your doctor about what to expect.
