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Immunotherapy Treatments

Date issued: July 2022 

Review date: July 2024 

Ref: C-462 v3

PDF:  Immunotherapy Patient Guide final May 2022 v2.pdf[pdf] 436KB

Contact numbers: Who do I telephone?

Oncology Patients

Unwell Patients: Emergency Contact: 01752 202082 and then ask for the oncology nurse on Bleep 0023 (available 24 hours a day)

Chemotherapy Unit: 01752 430290 or 430291

(For general enquiries Monday to Friday 9am-5pm)

Oncology Outpatients: 01752 763969

(For general enquiries Monday to Friday 9am-5pm)

Brent Ward: 01752 430043

(For general enquiries overnight and weekends)

Haematology Patients

Only for haematology patients who are unwell or have a temperature please call: 01752 432680

(Available Monday to Friday 8.30am-6.30pm)

Birch Day Case: 01752 432674 (Birch Reception) or 01752 432678 (Nurses Station)

(For general enquiries Monday to Friday 08.30-6.30pm)

Bracken Ward: 01752 432494

(For unwell patients and all advice overnight and weekends)

Immunotherapy related side effects and their management

This guide has been prepared to help you and your family and friends have a better understanding of immunotherapy treatments.

  • What is immunotherapy and how it works?

  • Side effects

It contains information on the most common side-effects associated with modern immunotherapy (known as ‘checkpoint inhibitors’) and a few strategies you can use yourself to minimise their effects.

What is Immunotherapy?

Immunotherapy is a relatively new type of biological therapy which is becoming more widely used in cancer patients.  There are a large number of treatments that are called immunotherapies.  You might also hear names such as targeted therapies, monoclonal antibodies or checkpoint inhibitors. 

The information in this booklet refers to a group of immunotherapies known as ‘checkpoint inhibitors’.  They aim to trigger the body’s immune response to detect and fight certain cancers.

Our immune system is our first line of defence against cancer. One of the important cells of the immune system is called a    T-cell.  T-cells help protect us from invading bacteria, viruses and parasites.  However, in order to stop the T-cells attacking healthy cells of the body they have ‘a brake’ or ‘checkpoint’ that stops them.

Immunotherapies take off ‘the brake’ on the T-cells which increases the ability of our immune system to detect and destroy cancer cells.

There is a short film available on the ‘MySunrise App’ regarding immunotherapy and the potential side effects it can cause.  Once you have the app downloaded the film can be found under:

‘Treatments’ > ‘Systemic Anti-Cancer Therapy’ > ‘Immunotherapies’.

There is more information regarding ‘MySunrise’ App on P17

When you might have these drugs

  • Whether you can have immunotherapy treatment depends on your type of cancer.  It might also depend on:

  • The stage of your cancer

  • Whether you have already had certain treatments

  • The genetics of your particular cancer

  • You might be offered immunotherapies as part of a clinical trial

Immunotherapy may be used as a single treatment or in combination with other chemotherapies or radiation.

The use of immunotherapies is continually changing as more evidence emerges about their effectiveness on different cancers.

How you have treatment

You usually have these drugs as a treatment through an intravenous drip into your bloodstream.

Side effects

These drugs boost all the immune cells, not just the ones that target cancer. So the overactive T-cells can cause possible side effects if they target normal healthy cells. These might include:

  • Tiredness (fatigue)

  • Feeling or being sick 

  • Dry, itchy skin, skin rash   

  • Loss of appetite

  • Diarrhoea  

  • Breathlessness and a dry cough, caused by inflammation of the lungs 

These drugs can also disrupt the normal working of the liver, kidneys and hormone making glands (such as the thyroid). You have regular blood tests to check for this.

Some of these side effects can be serious. Your medical team will inform you of the possible side effects so you know what to look out for. Tell your doctor or nurse if you have any side effects so they can treat them as soon as possible. 

Side Effects

  • Most of these side effects are mild to moderate and reversible if detected early and addressed appropriately.  The most important action you can take is to tell your doctor or oncology team of any new or worsening symptoms.

  • Side-effects of immunotherapy treatment typically appear within a few weeks or months after starting treatment.  However, they can arise at any time – as early as days after the first infusion but also up to two years after treatment has finished.

Serious side effects

Severe side effects can be life threatening. They may occur right away or up to 2 years after treatment ends.

If you are treated with an immune checkpoint inhibitor, it is important that you are aware of these side effects and that you call your doctor right away if they occur. If caught early, they can be treated. The list below describes serious side effects and their symptoms.

Pneumonitis: Inflammation of the lung                

  • New or worsening cough
  • Shortness of breath
  • Chest pain

Hepatitis: Inflammation of the liver

  • Yellowing of skin (jaundice)
  • Severe nausea or vomiting
  • Pain on the right side of your stomach area
  • Drowsiness
  • Tea-coloured urine
  • Bleeding or bruising
  • Feeling less hungry than usual

Colitis: Inflammation of the colon

  • Diarrhoea (loose stools) or more bowel movements than normal
  • Blood in stools or black, tarry, or sticky stools
  • Severe abdominal pain or tenderness         

Endocrine Issues: Hormone or gland problems, especially the thyroid, pituitary, adrenal glands & the pancreas

  • Headaches that will not go away
  • Extreme tiredness
  • Weight changes
  • Dizziness or fainting
  • Changes in mood or behaviour such as irritability or forgetfulness
  • Hair loss
  • Feeling cold
  • Constipation
  • Voice getting deeper
  • Excessive thirst or increased urination

Brain Inflammation: neuropathy, meningitis, or encephalitis

  • Headache
  • Fever
  • Tiredness or weakness
  • Confusion or hallucinations
  • Memory problems
  • Severe muscle weakness
  • Numbness or tingling in your hands or feet
  • Extreme sensitivity to light
  • Neck stiffness

Kidney Problems

  • Change in the colour or amount of urine
  • Blood in the urine
  • Swelling in the ankles
  • Loss of appetite

Skin

  • Rashes
  • Blisters
  • Itching
  • Ulcers in the mouth, nose, ears, or other mucous membranes, making it difficult to eat or drink

Infections

  • Fever
  • Cough
  • Flu-like symptoms
  • Pain when urinating

Infusion Reactions

  • Chills or shaking
  • Itching or rash
  • Flushing
  • Shortness of breath or wheezing
  • Swelling of face or lips
  • Dizziness Fever

In Summary

Immunotherapy is becoming an available treatment option in many different types of cancer, bringing hope to more and more patients. Research is being carried out to help identify those for whom immunotherapy may work and those who may have severe side effects. Until then, however, it is important that patients, caregivers know what to look for as possible side effects and to seek immediate help at the first sign of a problem. 

The telephone numbers that you need to call are detailed at the front of this booklet.

General Information for Patients undergoing Systemic Anti-Cancer Therapies

Blood Clots

Cancer increases the chances of a blood clot (thrombosis).  A clot can cause symptoms such as:

  • Pain, redness and swelling in a limb
  • Breathlessness
  • Chest pain

If you have any of these symptoms contact your department straight away. A blood clot is serious, but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.

Sexual relationships

Cancer treatment and the disease itself can affect sexual relationships. Some people may be unaffected by treatment whilst others have changes in levels of desire, changes in tolerance for physical activity and levels of fatigue. Anxiety and stress can also have an effect on sexual relationships. Often people find that sexual activity is not important during treatment. However, once treatment is over and normal life resumes, couples often find that it is during this time they need support, advice and information about resuming sexual activity.

Sexual feelings should return following treatment although time is required to allow you and your partner to come to terms with the changes and experiences you have been through. These are very natural feelings and it is important to talk them through with your partner.

If you are sexually active during the time you are on treatment, use condoms as an extra precaution to reduce a risk of further health problems. In all cases barrier contraception should be used as you should not become pregnant or father a child whilst receiving cancer treatment.

Feel free to discuss with your doctor and specialist nurse any matters relating to your sexual relations. If they cannot answer your questions they will be able to refer you to a counsellor or other health professionals who can help.

Fertility

Currently there is no long term data on the effects of immunotherapy and fertility.  The recommended advice is that effective birth control is used for the duration and up to 5 months post treatment.  It would be advisable to speak with your consultant before planning a pregnancy.

Exercise

Research has shown that most patients undergoing cancer treatment benefit from regular gentle exercise and it can help to combat fatigue. This may vary from taking the dog for a walk to joining a low level exercise class. However, it is important not to overdo it.

Work

It is entirely up to you and on how well you feel whether you continue to work or not throughout your treatment. Please discuss this with your consultant who will offer advice based on the work you do. If you require any specific information on employment and your rights please speak with our Benefits Advisor in the Mustard Tree.

Driving

You do not need to inform the DVLA that you are receiving immunotherapy treatment. We recommend that you have someone with you on your first appointment in case you feel unwell or lacking in confidence.

Alcohol

You may take small amounts of alcohol a few days after having your immunotherapy treatment, but you should check this with your doctor. Alcohol is dehydrating and you should make up for this by drinking more water or soft drinks as well.

Holidays

If you have planned to go on holiday when a treatment is due, please discuss this with your doctor, nurse or other member of staff. Your hospital doctor may delay a treatment until you return. Generally we will try and fit around your arrangements.

Many patients having treatment will be more at risk from sunburn. Some treatments can make your skin more sensitive to the ultraviolet radiation of the sun. To avoid this, use a high factor sunscreen or cover up your skin.

Flu Vaccinations and Immunotherapy

People receiving Immunotherapy on its own or in combination with any Systemic Anti-Cancer Therapy (SACT) are at increased risk of contracting the flu. It is advised that people receiving Immunotherapy with or without chemotherapy (SACT) should have the flu vaccine.

If you are over 65 there is a new enhanced flu vaccine. This enhanced flu vaccine is NOT recommended if you are on Immunotherapy or if you have had immunotherapy in the last 6 months.

Therefore, patients receiving immunotherapy are advised to have an alternative flu vaccine. If you are over 65 it is important to inform your GP of our advice.

It is also advisable for people receiving immunotherapy or chemotherapy to receive the pneumococcal vaccination.

Recommended timing of the flu and pneumococcal vaccine is ideally before any immunotherapy or chemotherapy treatment commences. However, if you have already started treatment, the vaccines should be given within 2-3 days following a cancer treatment. The reason for this is to avoid the time period when your immunity is likely to be suppressed.

NHS England advises that adults should have flu vaccine two weeks before children who are to receive live flu vaccine via the nasal route.

People receiving chemotherapy or immunotherapy (SACT) should only receive inactivated vaccines (non- live vaccine).

Family members can receive both live and inactivated vaccines; this offers protection for person receiving cancer treatment.

Inactivated vaccines include:

Flu Vaccine and Pneumococcal Vaccination

Live vaccines should be AVOIDED whilst receiving SACT

Live Vaccines include Varicella Zoster (Shingles) MMR and BCG

Normal vaccinations can recommence six months after completion of SACT if disease is in remission.

The Mustard Tree Macmillan Centre

Tel: 01752 430060

The Mustard Tree Macmillan Centre on Level 3 at Derriford Hospital is available for information and support. It is open 9.30am - 4.30pm Monday – Friday and you may ‘drop in’ at any time. The centre is open to anyone affected by cancer - patients, relatives and carers.  People can use the centre at any period in their illness. All the centre’s services are free of charge with the exception of activity classes when a small charge is made.

Additionally, if you have a clinic appointment or are waiting for cancer treatment you can wait in the Mustard Tree Macmillan Centre. You will be made welcome and offered refreshments (just let the clinic or chemotherapy receptionist know where you are).

Pastoral and Spiritual Care

No matter what your religious denomination, faith or even if you are not religious the hospital chaplaincy service is available to offer support or just a chat. Please ask a member of staff for contact details or visit the department on level 7 next to the hospital chapel.

Useful Websites and Apps

The following are just a few of the cancer related websites available on the internet. Many of them have further links to cancer information.

MySunrise App: has been developed for the South West of England with help from NHS England. 

? ?MySunrise provides a complete up-to-date information and reference tool for Cancer patients and their families, which guides and supports them through their cancer journey. It is complete with a whole range of videos, relevant links, cancer resources and contact information all specific to their own NHS Hospital cancer centre. 

https://www.cancerresearchuk.org  Cancer Research UK

https://www.christie.nhs.uk/  Manchester Christie Cancer Hospital

www.macmillan.org.uk  A comprehensive information service

www.nhsdirect.nhs.uk Information and useful links

https://plymouthcancersupport.com/   local support groups in the South West

 

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