Immunotherapy - Patient guideline

Teeth are normally not affected by the treatment. Dryness of the mucous membranes in the mouth can occur however, and some types of treatment can cause a decrease in the saliva production. Dryness makes the teeth more vulnerable, and can increase the risk of cavities.

Contact you dentisk and get an assesment of the condition of your teeth and mucous membranes.

We recommend that you stop smoking, as the benefits are considerable:

• Some types of teatment work better if you don't smoke
• The risk of getting another type of cancer is reduced
• The ability of the lungs to combat infections increases
• Your blood circulation, fitness and sense of smell and taste will get better

The treatment and its possible side effects could make you less inclined to be physically active, which again may result in reduced muscle strength, stamina and generel fitness. Your body and general wellbeing will benefit from you being physically active while receiving treatment.

By being physically active you may reduce the side effects of the treatment, maintain your fitness and muscle strength and thereby generally feel better. Physical activity may also reduce tiredness induced by illness and the treatment, and it is also beneficial with regard to heart, blood circulation and blood pressure and your health in general.

Therefore: be as physically active as you can, before, during and after the treatment.

Daily walks or bike rides (outdoors or on an exercise bike), housework or gardening can renew your energy, make you naturally tired and increase your appetite.

Your local council will have offers on exercise.

You may be eligible for a pay out from your insurance company and/or pension fund due to your critical illness. Contact them for further information.

You and your family/friends can help prevent potential infections by maintaining good hand hygiene using soap and hand sanitiser. Use it at home as well as in the hospital.

Immunotherapy works by helping your own immune system fight the cancer cells.

The immune system is the body's natural defense against foreign and abnormal cells in the body. Although the immune system recognises certain cancer cells, it does not always react adequately against them. This is due to the fact, that the cancer cells are very clever in developing defense mechanisms against the immune system.

Immunotherapy is targeted the body's immunesystem, and the main objective is to:

• Strengthen the ability of the immune system to recognise and target/attack cancer cells
• Impair the cancer cells ability to defend themselves

The treatment will often initiate a long-term impact on the immune system.

The drug is given as an infusion into a vein (intravenously), usually by inserting a plastic tube with a needle into a vein in your lower arm.

Sometimes a port is placed under the skin on your chest, and is connected to a larger vein via a catheter. A disposable needle is inserted into the port before each treatment and removed again after the treatment. The port will remain in place during the course of your treatment.

Type of drug and dosage depends on the type of cancer being teated. Duration, frequency and length of treaments can vary, so you cannot compare your treatment with another patients treatment. The doctor and nurse will explain your particular course of treatment prior to you starting the treatment.

The treatment will be given in the outpatients clinic, which means that you can go home after completing your treatment the same day.

The treatment affects the immune system, and the immune system attacks the cancer cells, but normal cells can also be affected by the treatment, which can result in side effects. How patients react to the treatment, and the severity of the side effects, vary a great deal.

The side effects, caused by immunotherapy, are called auto-immune side effects. They resemble auto-immune diseases, caused by the body's natural defense system (immune system) attacking normal cells by mistake, which can give an inflammation-like reaction in the body.

Regular blood tests will monitor the impact the immunotherapy has on your organs, so that medical intervention can be initiated if needed.

Most side effects are temporary, and do not need to be treated. Some, however, are of a longer duration, and a few can turn into a chronic condition.The sooner you tell us about possible side effects, the sooner we can treat them, and maybe prevent the problem from getting serious.

You may experience side effects at any time during your treatment - but you may also experience side effects weeks or months after having completed treatment.

Your illness and the treatment does not prevent you from seeing your family and friends, but sometimes it can be difficult for them to know, how best to support you.

Your family and social circle may seem reluctant, because they are worried about saying or doing something wrong. It is therefore important, that you tell them what you need. It can be a help for them to be asked to do everyday tasks, e.g. do the shopping or cooking or mowing the lawn.

You and your family may find that, given the situation you're in, you may need more help and support for a period of time.

Your next of kin have to come to terms with a new and unknown world. At the same time they may be the first to recognise the changes, and realise that additional help is needed.

The various tasks at home will often become the responsibility of your next of kin, making them forget about their own needs and feelings. They may need the possibility to talk about the uncertainty and their worries, and for someone to ask how they are doing.

Friends, neighbours and other people in your social circle can contribute by helping to do the tasks needed.

Your next of kin may also inform their employer and colleagues about the situation, and that it may be necessary for them to get time off for appointments, or a lessening of their work load for a period of time.

Openness is key to preventing children from feeling left out, isolated and alone with their fantasies and emotions. The initiative to talk about the illness and its consequences should always come from the adults! Children will often draw back if they sense a subject or situation is difficult for their parents.

Age and maturity of the children are also of great importance when broaching the subject of cancer, as are culture and traditions.

It can be difficult to find the energy to be parents when you or your partner is ill. Involving other adults whom the children trust, might therefore be helpful in dealing with practical as well as emotional issues.

Informing the childrens kindergarden, school, teachers, coaches etc. might be useful. Ask them to contact you in case of changed behaviour in your children.

Arrange with the nurse to let your children/grandchildren come to the ward and see the treatment you are receiving.

Children can deal with a lot, except being left out!

Do not keep away from other people. You can go shopping, go to parties and generally be with and among other people, as you normally would.

However, do not visit with people who are ill.

Avoid close contact if people you live with are ill with a cold, the flu or another infectious disease.

Illness and the treatment can make it difficult to keep working, which is why some patients are on sick leave for a period of time.

You are not obliged to tell your colleagues about your illness og treatment, but openness toward colleagues and your employer often results in greater understanding, and the possibility of greater work flexibilty.

Some receive full pay while on sick leave, others receive sick benefits. If you have questions regarding work or economy, you can contact your social worker at the local council.

The nursing staff will try and accommodate your wishes with regard to your treatment, if you are going to a party or other events.

Travelling outside Denmark may not always be possible, while you are receiving treatment. If you plan a holiday, make sure to clarify your insurance conditions, and the possibilty of receiving medical attention while on holdiday.

Your appetite and sense of taste and smell may change while you reveive treatment. Some experience loss of appetite and losing weight, while others may gain weight, which in both cases can influence your quality of life and the course of your treament.

The nurses will be able to give you guidance with regard to food, drink and nutritional supplements.

You can drink wine, beer and liquor during the course of your treatment.

Illness and treatment can change your appearance, and the way you perceive yourself, although the extent of change in appearance, and how important it is, varies.

The changes are not necessarily only outwardly. Many also experience changes in body image, manifesting itself by feeling insecure about their body, and feeling loss of control. The changes can affect self-perception and self confidence. Talk to your family and friends, other patients or the hospital staff about it.

Physical activity can help you feel better about your body.

Some patients experience impaired memory and ability to concentrate before, during and after medical cancer treatment.

The perception of these difficulties can vary from person to person. Usually the symptoms are temporary, and will have disappeared within, at the latest, 12 months after completing treatment. For a few, however, the changes will be present for a longer period of time.

Illness and treatment can affect your sex drive. Tiredness, pain and wearyness can make you feel less inclined to have sex.

Sexual relations/intercourse is absolutely allowed, and there is no risk of contaminating your partner during sex.

It can be difficult to talk about your sexuality, and it is often the silence and the worry about what your partner is feeling and thinking, which is the biggest problem. The sexual relationship may change, but the need for closeness, comfort, touch and intimacy often intensifies when you are confronted by illness. It can therefore be of great comfort to you and your partner if you continue to show each other physical as well as emotional tenderness.

If you need guidance and/or have questions, do not hesitate to ask the nursing staff. The doctor can furthermore refer you to sexological counseling, if needed.

A lot of patients use different types of alternative treatment while they receive their cancer treatment. Some alternative treatments may help you get through your illness and cancer treatment easier, while others potentially could affect your cancer treatment in a negative way.

Doctors and nurses

The doctors and nurses will give you information, support and guidance in connection with your illness and treatment. Please ask if you are in doubt about something, if you are afraid that you have misunderstood something, or if you need to have information repeated.

There are various written patient information pamphlets, which the staff will give to you if needed.

Psychologist

Quite a few work places offer psychological help. Your GP can also refer you and your family to a psychologist. You are entitled to a maximum of 12 sessions, which will partly be payed for by the national health system.

Kræftens Bekæmpelse (Danish Cancer Society) also offers psychological help.

Physiotherapy

In case of need of rehabilitation or assistive devices, the staff will refer you to a physiotherapist, who can offer advice and treatment with regard to for example rehabilitation, sleeping and resting positions, shortness of breath, lymphedema in arms or legs and general physical activity. A few offers are available within the Oncology Department, but usually we, or your GP, will refer you to a physiotherapy clinic outside the hospital.

Dietician

A dietician can offer help, if there are problems concerning your nutrition. You can either make an appointment with our dietician in the Oncology Department, or you can make an appointment with a dietician in your local community. Kræftens Bekæmpelses Kræftlinje also has a dietician you can contact - check their website for further infiormation.

Hospital chaplain

Thoughts and contemplations about personal relationships, crisis, grief, existential and/or religious questions often arise following the onset of serious illness.

The hospital chaplain is available, if you need a fellow human being to talk to. The chaplain has time to listen, and is used to talking to people in your situation.

You, as well as your family, are welcome to contact the hospital chaplain regardless of your personal relgious observation, if any.

The chaplain can also help you get in touch with a chaplain in your community, whichever relgious community you belong to.

General practitioner (GP)

It is advisable to keep in touch with your GP during your course of treatment, thus making it easier for your GP to help and support you and your family.

Your GP is responsible for all health related problems not connected to your cancer illness.

Your GP will continously be informed about your illness and treatment, unless you wish otherwise.

Home care

You may find, that you would benefit from home help or home care relating to for example cleaning, laundry, personal hygiene, medicine, ordering assistive devices, support and adviceduring your course of treatment.

You can either contact your local council (kommune) yourself, to get in touch with the home help, or we, or your GP can help you. It is the local council, who decides how much help you are entitled to.

Case manager/social worker

A case manager or social worker at your local council can help clarify social and economical questions related to e.g. work, pension and insurance.

Kræftens Bekæmpelse (Danish Cancer Society)

You can get counselling at the ”Kræftens Bekæmpelse” counselling centers. Counselling is free and will be given either individually or together with your next of kin. Next of kin are also welcome to contact the counselling centers.

At the counselling centers you can talk to volunteers, who have themselves been in close contact with cancer.

There is walk-in counselling during daytime hours, hence no prior appointment is needed.

The counselling centers also offer various activities, and administer grants given by Kræftens Bekæmpelse.

To find your nearest cancer counselling center, go to: www.cancer.dk/raadgivning.

Telephone help line

Kræftlinjen (Cancer help line) is a free telephone help line provided by Kræftens Bekæmpelse. The health care professionals, who man the phones, are bound by confidentiality. They can offer you personal advice and general information with regard to e.g. treatment, side effects, nutrition, social security and various support options. You can be anonymous, if you wish.

Call Kræftlinjen on: 80 30 10 30

Monday to Friday: 9-21

Saturday and Sunday: 12-17

Patient associations

There are various patient associations, who arrange meetings and events, and who offer advice and support. For more information, go to:

Kræftens Bekæmpelse - www.cancer.dk.

Rehabilitation

Life may be different after a cancer diagnosis. Many have questions and concerns related to family, work, economy and so forth. Talk to the nursing staff, if you need advice and support. Your oncologist can refer you to rehabilitation at your local council (kommune).

All local councils provide rehabilitation. Go to: www.sundhed.dk, to find a list over all rehabilitation offers in Denmark.

Kræftens Bekæmpelse also offer rehabilitation, educational courses and various classes for patients and their families: www.cancer.dk

We also recommend an E-learning programme ”Livet med og efter kræft” (Life with and after cancer), which has an english summary: www.livogkraeft.rm.dk.