 Having chemotherapy treatment for neuroendocrine tumours (NETs)

Chemotherapy uses anti cancer (cytotoxic) drugs to destroy neuroendocrine tumour (NET) cells. The drugs circulate throughout your body in the bloodstream.

Chemotherapy isn’t usually the first choice of treatment for NETs. You might have it for a NET that:

is fast growing (poorly differentiated)
has spread to other parts of the body (metastatic)

Chemotherapy seems to work better for some types of NETs than others. Doctors continue to look into this and the best combinations of chemotherapy drugs. Your doctor might offer you chemotherapy as part of a clinical trial.

You can find out more about research and clinical trials in the sections about the different types of NETs.

Types of chemotherapy

There are a number of different chemotherapy drugs for NETs. You usually have a combination of 2 or 3 drugs.

The type of chemotherapy drugs you have depends on different things such as where the tumour started and how fast it’s growing. The most common types of chemotherapy drugs for NETs are:

streptozocin and fluorouracil
streptozocin and doxorubicin
temozolomide
capecitabine
etoposide and cisplatin or carboplatin

How you have chemotherapy

You usually have chemotherapy as a drip into your bloodstream (intravenously). Some drugs come as tablets or capsules that you swallow whole.

Into your bloodstream

You have treatment through a thin short tube (a cannula) that goes into a vein in your arm each time you have treatment.

Or you might have treatment through a long line: a central line, a PICC line or a portacath. These are long plastic tubes that give the drug into a large vein in your chest. The tube stays in place throughout the course of treatment. This means your doctor or nurse won't have to put in a cannula every time you have treatment.

Taking your tablets or capsules

You must take tablets and capsules according to the instructions your doctor or pharmacist gives you.

Whether you have a full or empty stomach can affect how much of a drug gets into your bloodstream.

You should take the right dose, not more or less.

Talk to your healthcare team before you stop taking or miss a dose of a cancer drug.

Where you have chemotherapy

You usually have treatment into your bloodstream at the cancer day clinic. You might sit in a chair for a few hours so it’s a good idea to take things in to do. For example, newspapers, books or electronic devices can all help to pass the time. You can usually bring a friend or family member with you.

You have some types of chemotherapy over several days. You might be able to have some drugs through a small portable pump that you take home.

For some types of chemotherapy you have to stay in a hospital ward. This could be overnight or for a couple of days.

Some hospitals may give certain chemotherapy treatments to you at home. Your doctor or nurse can tell you more about this.

Watch the video below about what happens when you have chemotherapy. It is almost 3 minutes long.

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Transcript

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Clare Disney (nurse): Hello, my name is Clare and this is a cancer day unit.

So when you arrive and you’ve reported into with the receptionist, one of the nurses will call you through when your treatment is ready, sit you down and go through all the treatment with you.

Morning, Iris. My name is Clare. I am the nurse who is going to be looking after you today. We’re going to start by putting a cannula in the back of your hand and giving you some anti sickness medication. And then I am going to come back to you and talk through the chemotherapy with you and the possible side effects you may experience throughout your treatment. Is that okay?

Before you have each treatment you’ll need to have a blood test to check your bloods are okay. And you’ll also be reviewed by one of the doctors to make sure you’re fit and well for your treatment. Sometimes you’ll have the blood test taken on the day of your treatment; other times you’ll have it the day before your treatment when you see the doctor.

Each chemotherapy is made up for each individual patient, depending on the type of cancer they have and where it is and depending their height, weight and blood results.

So, depending on where your cancer is some people have their chemotherapy drug, their cancer drug by drip, some will have an injection and other people will have tablets.

So, Iris, your chemotherapy is going to be given to you in what we call cycles and the cycles are given every three weeks for a period of six cycles. So, you will be coming in for approximately five months for your chemotherapy.

Depending on where your cancer is and what type of cancer you have will be dependent on how often you come in for treatment. An example of a treatment cycle would be for you to come in on Day 1, Day 8 and Day 15 then to have a week’s break before you come back again for Day 1 treatment.

Depending on the type of treatment that you are having we will also give you some anti sickness tablets to take alongside your chemotherapy and also some drugs to prevent any reactions if that’s appropriate.

All chemotherapy is given over different time periods so it’s best to check with your nurse about how long you are likely to be in the unit for. This can range from anything up to an hour to an all day treatment slot so please be prepared to bring along some bits to keep you occupied, such as books and music.

So, before you go home it’s important to make sure you have got the tablets you need to go home with your anti sickness medications and any other symptom control tablets that you may require. Also, to make sure that you’ve got the telephone numbers for the oncology unit to phone if you have a temperature or you are experiencing any other symptoms at home that you need to ask advice about.

So, please make sure when you leave the unit that you’ve got all the information you require and if you’ve got any questions at all don’t hesitate to ask the nurse who will be able to answer them for you.

Before your next cycle of treatment you will come in and see the doctor in the clinic room, you’ll have a blood test and an examination to make sure you are fit and well for treatment you will then come back the following day or later on that week for treatment.

Before you start chemotherapy

You need to have blood tests to make sure it’s safe to start treatment. You usually have these a few days before or on the day you start treatment. You have blood tests before each round or cycle of treatment.

Your blood cells need to recover from your last treatment before you have more chemotherapy. Sometimes your blood counts are not high enough to have chemotherapy. If this happens, your doctor usually delays your next treatment. They will tell you when to repeat the blood test.

Side effects

Common chemotherapy side effects include:

feeling sick
loss of appetite
losing weight
feeling very tired
increased risk of getting an infection
bleeding and bruising easily
diarrhoea or constipation
hair loss

Contact your doctor or nurse immediately if you have signs of infection. These include a temperature above 37.5C or below 36C, or generally feeling unwell. Infections can make you very unwell very quickly.

Side effects depend on:

which drugs you have
how much of each drug you have
how you react

Tell your treatment team about any side effects that you have.

Coping

Treatment for neuroendocrine tumours can be difficult to cope with for some people. Your nurse will give you phone numbers to call if you have any problems at home.

If you have any questions about treatment, you can talk to Cancer Research UK’s information nurses on freephone 0808 800 4040, 9am to 5pm, Monday to Friday.