Immunotherapy - Possible side effects

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What to expect with your melanoma treatment

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

Some patients don’t suffer from any side effects from immunotherapy treatment. This is particularly true for single agent immunotherapy treatment. 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. Medical teams have so much experience supporting patients with immunotherapy treatments but early reporting of anything unusual is essential.
Contact your clinical nurse specialist as soon as possible if:

  • you experience side effects
  • 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 anytime on:

Melanoma Helpline 0808 801 0777

Doctor talking with patient

Possible side effects from melanoma immunotherapy treatment

Remember….Awareness and early treatment

  • 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.
  • Early intervention can help you and the health team manage side effects better. 
  • Keeping a diary may help you monitor your side effects effectively

How soon and how often should I expect to experience immunotherapy side effects?

The example graph below shows typical timings of the start of side effects when melanoma patients were treated Ipilimumab. This is a type of immunotherapy, known as an immune check-point inhibitor. Side effects can vary by the type of treatment and differ between patients.

Side effect timings with immunotherapy

Reproduced from  Jeffrey S. Weber, Katharina C. Kähler, and Axel Hauschild Management of Immune-Related Adverse Events and Kinetics of Response With Ipilimumab. Journal of Clinical Oncology 2012 30:21, 2691-2697

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, 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 still do very well. It is not known what the optimum amount of immunotherapy treatment to boost your immune system and therefore it is a balance of how well your melanoma has been controlled and any side-effects you may be troubled with.

 

Some clinical terms you may hear in relation to mild or severe side effects

Alopecia (hair loss)

Anaemia

Arthritis

Colitis

Constipation

Diarrhea

Encephalitis

Hepatitis

Hypopituitarism

Hypophysitis

Hypothyroidism

Immune-related adverse events (irAEs)

Infusion-related reaction / injection site pain

Jaundice

Fatigue

Kidney failure

Lymphopenia

Meningitis

Myocarditis or inflammation of the heart

Neuropathy

Paralysis,

Parathesia

Pancreatitis

Pneumonitis or inflammation of the lung

Thyroid dysfunction

Thromphocytopenia

Type 1 diabetes