As a kidney cancer patient, you should be aware that the side effects of immuno-oncology treatments might be very different from side effects that you have experienced before on any prior therapies. For this reason, it’s important to understand a few basic facts about experiencing and reporting immuno-oncology side effects.
First of all, remember to tell all healthcare professionals that you meet with that you are on a “different” kind of cancer therapy. This includes your family doctor, pharmacist, local healthcare team, and any emergency staff if you are ever taken to hospital. Immuno-oncology is still very new. Many healthcare professionals may never have heard of it.
It is not traditional chemotherapy. It is not targeted therapy.
Anyone treating you, even for something that seems quite mild, must take that extra step to contact your oncology team.
Consider carrying with you a card that lists the drug names and your oncology team’s contact information.
Unlike chemo, immuno-oncology activates your immune-system, it doesn’t supress it.
Immunotherapy treatments work by activating your immune system. Unsurprisingly, the main side effects of immunotherapy are when the immune system is too active and attacks normal tissues of your body. These side effects mimic other illnesses where the immune system is too active; so called autoimmune diseases.
Unlike with targeted agents for kidney cancer, it is unwise to “soldier on” with issues until your next appointment time. Good, ongoing communication with your healthcare team is essential.
While on clinical trials, kidney cancer patients have 24/7 access to an expert oncology team. This team will have familiarity with a wide range of side effects that may be as unique and individual as each person’s unique immune system. Keep track of side effects and call in to the numbers given by your healthcare team. Your local doctor or community hospital (while usually good for routine matters) will not likely be helpful when it comes to immuno-oncology.
You should promptly report ALL side effects that you experience to your oncology team. This applies even long after you have had your infusion. Something that might appear quite mild at first (e.g., diarrhea) can quickly become something very serious if it is an immune-related side effect. Do not hesitate to call in the side effect on weekends, holidays, or off-hours. It is far better to call in something that may be unrelated than to hold off making a phone call even for 24 hours. In some cases a short course of steroids may be necessary and then you can resume treatment.
The side effects you may experience will depend a great deal on the particular immuno-oncology drug or drug combination that you are taking. Ask your oncology team for a complete list of possible side effects and take extra note of those that can result in serious consequences.
While many patients do not like to complain or bother their oncology team, it is imperative that patients and caregivers very closely monitor any and all changes.
Tipp: Keep a diary of side effects including bowel movements per day and do not hesitate to make a phone call as soon as something becomes noticeable. Even one day of delaying could result in hospitalization and more serious interventions may be required.
For information about the specific medication or combination of medication you are taking, please consult the information given to you by your oncologist. The following side effects are adapted from the official labels of immuno-oncology drugs that have been approved for other types of cancer at this time:
a. Rash & other skin-related side effects:
This may be a symptom of inflammation of the skin. For some medications (e.g, CTLA-4 inhibitors like ipilimumab), skin reactions may first occur 2-3 weeks after the first dose is given. Inflammation of the skin can lead to severe skin reactions. Signs and symptoms of severe skin reactions may include:
- skin rash with or without itching
- sores in your mouth
- your skin blisters and/or peels.
If you are going outside, it is important that you apply a broad-spectrum sunscreen (of SPF 30 or greater, frequently applied).
b. Diarrhea, loose or bloody stools and/or pain in the abdomen:
These may be symptoms of inflammation of the gut leading to intestinal problems (colitis) that could lead to tears in your intestine if left untreated.
Signs and symptoms of colitis may include:
- diarrhea (loose stools) or more bowel movements than usual
- blood in your stools or dark, tarry, sticky stools
- stomach pain (abdominal pain) or tenderness
c. Shortness of breath, coughing, and/or chest pain:
These may indicate inflammation of the lungs. These may be signs of pneumonitis. Your doctor may need to order a chest x-ray or CT scan to rule out pneumonitis so that it can be treated before becoming serious.
d. Nausea, anorexia, jaundice and abdominal pain:
These may be symptoms of Liver-related issues: Inflammation of the liver (hepatitis) can lead to liver failure if not treated. Signs and symptoms of hepatitis may include:
- yellowing of your skin or the whites of your eyes
- dark urine (tea colored)
- nausea or vomiting
- pain on the right side of your stomach
- bleeding or bruise more easily than normal
e. Hormone-related issues:
Inflammation of the hormone glands (especially the pituitary, adrenal, and thyroid glands) may affect how these glands work. Signs and symptoms that your glands are not working properly may include:
- persistent or unusual headaches
- unusual sluggishness, feeling cold all the time, or weight gain
- changes in mood or behavior such as decreased sex drive, irritability, or forgetfulness
- dizziness or fainting.
Your doctors may be routinely monitoring your hormones with blood tests.
f. Eye-related issues:
Inflammation of the eyes. Symptoms may include:
- blurry vision, double vision, or other vision problems
- eye pain or redness
g. Fever and flu-like symptoms:
Be sure to ask your oncology team before taking any medication for fever or flu-like symptoms, even over-the-counter medications that you have taken before.
h. Kidney-related problems that may appear as:
decrease in the amount of urine, darker urine, swelling of the ankles and/or loss of appetite.
Inflammation of the nerves can in extremely rare cases lead to paralysis. Symptoms of nerve problems may include:
- unusual weakness of legs, arms, or face
- numbness or tingling in hands or feet
j. Fatigue or just “Not feeling well”…
Other symptoms not listed here may be related to the immune-oncology treatment. It is important that you report a symptom or feeling of vague “feeling unwell” as soon as you notice it and/or if a previously reported side effect becomes worse.
One of the unique aspects of immuno-oncology is that its beneficial effects (and side effects) can occur long after the actual treatment is given. Some side effects may begin many months after treatment.
You best know your own body. If something is unusual for you, report it as potential side effect to your oncology team. Even if you think it can’t possibly be related, write it down and call it in.
Delayed side effects are uncommon, but it is important to speak with your cancer team to discuss any new problems.
Getting prompt treatment for any side effects may prevent serious side effects from becoming permanent.
Remember that many community physicians will not necessarily be familiar with the unpredictability of immuno-oncology side effects. Giving you an antibiotic when you need a steroid could cause significant issues.
Do not hesitate to report a side effect or change in side effect to your oncology nurse or team. They will be in the best position to treat your side effect so that you can continue to receive your therapy.
The treatment of side effects depends on what side effects (if any) you develop, and how severe these are. This description is only intended as a guide – always seek advice from your doctor for the management of any problems that occur.
Mild side effects: Examples of mild side effects include a mild rash, changes in your blood tests without any symptoms, or one or two loose bowel motions. Mild side-effects are often simply observed by your health-care team, or might benefit from simple things like a moisturising cream.
Moderate side effects: When symptoms begin to interfere with your activities or cause more difficulty, these more significant problems may merit intervention and treatment with drugs that suppress your immune system; typically corticosteroids (prednisone, prednisolone, dexamethasone etc.). Steroid tablets are quite potent, so you might be prescribed a course of tablets that decreases over time. Because immune side effects take time to resolve, this might mean taking steroids for 2-4 weeks.
Severe side effects: problems so severe that mean you need to be hospitalised and treated with high-doses of steroids. Special medications can sometimes be needed. Most of these severe side effects are reversible, but you may need close monitoring for some time
Side effects might be your first clues that your immune system is being activated in some way. This might mean a positive activation that your immune system is attacking your cancer, or an indication that your immune system is attacking healthy tissues. It may seem that a rash or skin reaction is a good indication that the immune system might be being activated, this is true, but unfortunately it’s important to remember that even people who do not develop any side effects can benefit from immuno-oncology treatment.
With the newer checkpoint inhibitor medications, many experts are suggesting that less drug does not necessarily mean less side effects. New side effects can even appear after the drug was stopped. We have yet to learn how much drug, in which schedule and for how long the drug is needed for optimum effect. Clinical trials and real patient experiences are needed to grow our experience base in kidney cancer specifically.
Clinical trials will give us a great deal of information about how immuno-oncology treatments work in kidney cancer. The results (including the side effects) may not be the same in kidney cancer as in other cancers. For example, many kidney cancer patients have some degree of kidney function loss (either from a nephrectomy or partial nephrectomy).
Each cancer type behaves quite differently so we depend upon clinical trials in kidney cancer to inform us about the range of side effects and their severity. If you are a patient on a clinical trial, you should report all side effects as they occur. This will help you and help future patients who may receive these medications.
Cancer patient organizations provide much needed peer support with others on the same or similar treatments, but in the case of immuno-oncology, it is important to treat each person’s experience individually. By all means, share your experiences. But remember, what is normal for one person on another drug may be an important side effect for you to report.
Kidney cancer patients around the world are anxiously awaiting the results of these important clinical trials. Thank you to the patients and families around the world who are taking part.
Immune-related side effects arising from treatment with checkpoint inhibitors can affect any organ or tissue, but most commonly affect the skin, colon, lungs, liver and endocrine organs (such as the pituitary gland or thyroid gland).
Most of these side effects are mild to moderate and reversible if detected early and addressed appropriately, so the most important action you can take is to tell your doctor or oncology team of any new or worsening symptoms, or any symptoms that are worrying you.