Immunotherapy - Possible side effects

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How often and how severe the side effects are can vary from person to person. They also differ in timings and duration and can depend on what treatments or combinations of treatments you are having.

Some patients don’t suffer from any side effects from immunotherapy treatment, particularly if they are having one immunotherapy treatment with pembrolizumab or nivolumab (sometimes called single agent immunotherapy). However, you may develop side effects at some point during your treatment, or even after your treatment has finished.

Your medical team will go through the possible side effects. They will monitor you closely during treatment and check how you are at your appointments. This will include blood tests which may show effects of immunotherapy treatment that you are not aware of as you may feel well. Medical teams have so much experience supporting patients with immunotherapy treatments but early reporting of anything unusual for you is really important.

Contact your clinical nurse specialist as soon as possible if:

  • you experience any side effects or anything that is unusual for you

  • your side effects aren’t getting any better

  • your side effects are getting worse

Our Melanoma Helpline is also here to support you.

Contact us on:

Melanoma Helpline 0808 801 0777

Doctor talking with patient

Fatigue or tiredness

General fatigue or tiredness or having little energy is a common effect in patients with cancer and also in patients being treated with immunotherapies. It may, however, be a symptom of something else going on in your body such as a problem with your thyroid function or possibly something more serious and so this would need to be ruled out.  The tiredness can be overwhelming, and it can last a long time and can even carry on after you have finished your treatment. Gentle exercise has been shown to help, even if this is a short regular walk.

.More information about fatigue management

Possible side effects from melanoma immunotherapy treatment

The diagram shows that immunotherapy treatment can cause side effects in many parts of your body and the symptoms you may experience.Side Effects InfographicRemember….be aware of any changes and report them to your medical team straight away so they can treat your side effects quickly.

  • How often and how severe the side effects are can vary from person to person.
  • Your medical team will go through the possible side effects and monitor you closely through treatment to help manage them.
  • A blood test may show signs of a side effect while you feel well.
  • If you notice anything that is unusual for you, contact your medical team.
  • Early treatment can help you and the healthcare team manage side effects better.
  • Keeping a diary may help you monitor any side effects.

How will immunotherapy-related side effects be managed?

It is easier to treat side effects if they are picked up early which usually means they are less severe, or at a lower ‘grade’; the higher the grade the more serious the side effect. It is not actually known how many cycles of immunotherapy treatment is needed to treat your melanoma and it is quite common to pause or stop treatment, particularly if you are being treated with a combination of ipilimumab and nivolumab. Side effects are generally managed by treating the problem (also known as ‘supportive treatment’) and/or treating with steroids or other treatments that supress (dampen down) the immune system.

  • Early treatment with steroids to manage side effects will not negatively affect how your melanoma responds to immunotherapy treatment.
  • Even if you have to permanently stop immunotherapy treatment, this is not likely to affect how your melanoma has responded.

Some people may experience side effects from taking steroids to control the side effects of immunotherapy. These can include:

Weight gain, insomnia, loss of muscle mass, diabetes, swelling of the ankles, bruising, skin that damages easily, difficulty producing the hormone cortisol.

Please note that some patients’ blood sugar levels can go up when they are on steroids so your levels may need to be tested. Ask your medical team if you need a blood glucose monitor and if so, if they can loan or give you one to use.

The diagram below shows how the different ‘grades’ of side effects may be generally treated. The higher the  grade, the more serious the side effect.

*Adapted from ESMO Guide on immunotherapy side effects.

Immunotherapy side effects in more detail

Further resources:

For more information on immunotherapy view our video, by Dr. Elaine Vickers, Cancer communication specialist

Ian Goddard is a retired naval officer with stage 4 malignant melanoma. He was treated on a trial and given combination treatment of ipilimumab and nivolumab in 2017.

In 2021, he was recorded chatting to Helen Moorey, a skin cancer clinical nurse specialist about his treatment and the significant side effects he endured including hypoadrenalism and colitis requiring steroids and infliximab treatment. He is now doing well.

Ian talks about his concerns about not getting the full treatment of 4 doses of ipilimumab and he wishes he knew at the outset that this is quite common and often a good sign that a patient is responding well to treatment. He also talks about acting upon side effects as soon as you notice symptoms that are not normal for you.  It was Ian’s wife that always noticed when things weren’t ‘right’ and recommended that he contact the hospital. Early reporting is really important as side effects are generally easier to treat when they are less severe. Many people treated with the combination of ipilimumab and nivolumab don’t complete all four cycles due to side effects and the treatment is still effective. It is not known what the optimum amount of immunotherapy treatment to boost your immune system is, and therefore it is a balance of how well your melanoma has been controlled and any side-effects you may be experiencing.

 

Immunobuddies Podcast:

The Immunobuddies podcast hosted and co-founded by Professor Ricky Fraser (Consultant Oncologist at Velindre Cancer Centre) & Professor Anna Olsson Brown (Consultant in Medical Oncology and Immunotherapy Service Lead, University Hospitals Sussex NHS Foundation Trust)  is a free podcast aimed at any anyone with an interest in immunotherapy and its impact in treating cancer. Recently, for the very first time a patient has been invited to take part in the podcast, and throughout six episodes, Imogen Llewellyn, a stage-four melanoma patient, shares her concerns and poses questions to Ricky and Anna. In preparation for the podcasts, questions were collated from patients and clinical teams.

The topics discussed in these six episodes range from what is immunotherapy and its common side-effects, to adjuvant treatment and role of diet and exercise. You can access these episodes here:

Number 1: Immunotherapy with Imogen Llewellyn. Q1-5- Fundamentals of Immunotherapy

 

Number 2: Immunotherapy with Imogen Llewellyn. Q6-14 During immunotherapy – Side effects explained – Can I talk to someone for advice?

 

Number 3: Immunotherapy with Imogen Llewellyn. Q15-18  Immunotherapy – My family, friends and career are important to me, can you advise?

 

Number 4: Immunotherapy with Imogen Llewellyn. Q19-24 -During and after Immunotherapy – I have so many questions about my treatment journey, potential side effects and after-care?

 

Number 5: Immunotherapy with Imogen Llewellyn.Q25-34 -How will immunotherapy impact me and my family?

 

Number 6: Immunotherapy with Imogen Llewellyn. Q35-44 -Immunotherapy- what did they say? Adjuvant?!? Medical jargon demystified!

Useful Links:

Addisons Self Help Group: https://www.addisonsdisease.org.uk/

The Versus Arthritis helpline: https://versusarthritis.org/

The National Rheumatoid Arthritis Association: https://nras.org.uk/

Relevant References:

*Patient Guide on Immunotherapy-Related Side Effects and Their Management: https://www.esmo.org/for-patients/patient-guides/patient-guide-on-immunotherapy-related-side-effects-and-their-management