Managing symptoms and side effects

Some of the most common symptoms associated with NETs are listed below.

• Upset bowels (e.g. diarrhoea or constipation)
• Flushing of the skin
• Abdominal pain or discomfort
• Loss of appetite
• Wheezing
• Fatigue

Symptoms may also influence your appearance, strength and ability to carry out activities, self-esteem, and sexual intimacy with your partner.

The side effects of different treatments for NETs will depend on the specific treatments, combination of therapies and dosing you receive. These side effects of treatment can be similar to the symptoms of NETs and may include diarrhoea and other gastrointestinal symptoms such as bloating and wind, nausea and vomiting and fatigue.

If you have diarrhoea you might find making some changes to your diet helps. If the diarrhoea is associated with carcinoid syndrome or facial flushing (another common symptom of carcinoid syndrome) you might find that some foods or drinks trigger symptoms and reducing or avoiding these helps.

Some people with NETs can experience pain, which can be due to a number of different causes. These may include the location of the tumour(s), the side effects of surgery or the effects of other NET treatments.

If you are suffering from other physical or emotional effects due to NETs, this can make it more difficult for you to handle pain. Pain should be managed by your NET team in collaboration with other specialists (e.g. from the pain team or palliative care team).

If you have any questions about the possible side effects of NETs treatments, then ask your doctor or specialist nurse for more information. If you experience side effects, your doctor may be able to change your treatment or prescribe some medication to relieve these symptoms.

See the NETs and work section on this website to find out how making adjustments to your work schedule may help you to manage the impact of some treatment side effects.

Diarrhoea is very common in patients with some forms of NETs. There may be a number of different causes of diarrhoea and these may not relate to your NET.

Causes of diarrhoea include:

• Steatorrhoea from pancreatic enzyme insufficiency: needing pancreatic enzyme replacement medication to be taken with food
• Small intestinal bacterial overgrowth: diarrhoea occurs alongside a number of other vague and erratic symptoms such as bloating, wind, gurgling. It is cause by the balance of bacteria species (normally present in everyone’s bowel) changing. This can be either tested by a breath test or treated with antibiotics

• Bile acid diarrhoea, sometimes associated with having your gallbladder or part of your bowel removed. This can either be tested for or treated directly with tablets or drinks called bile acid sequestrants
• Carcinoid syndrome or syndrome from a (rare) functioning pancreatic NET
• Some NETs treatments. Be sure to let your NET team know about any diarrhoea you have so that can help you to manage this.
• Other causes of diarrhoea unrelated to NETs, such as irritable bowel syndrome (IBS), coeliac disease, among others.

If you experience diarrhoea, please discuss this with the gastroenterologist on your NET team, or primary physician, especially if you have any new symptoms where your bowel habit has changed.

Flushing of the skin is a very common symptom of carcinoid syndrome and may appear as a red or purple blush that appears suddenly on the face or neck. These flushes may also occur on the back or legs. They can last from around 30 seconds to as long as 30 minutes. In people with NETs, skin flushing is more likely to be “dry” flushing (without sweating), rather than “wet” flushing (with sweating).

Some medications, such as antidepressants, may also make flushing symptoms worse. Talk to your doctor or specialist nurse to see if there are any treatments you should avoid but don’t stop taking any medications without their advice.

Avoid the triggers of flushing

Flushes in people with NETs can be triggered by emotions or stressful situations, by eating certain foods or consuming certain drinks (e.g. alcohol, caffeine or hot liquids). Many people do not have any particular problems with food or drinks, but some have reported the following as potential triggers:

• Large meals
• Oily food or foods high in fat
• Spicy foods
• Food and drinks with a moderate-to-high amine content

Foods and drinks that have moderate-to-high amount of amines in them include mature cheese, wine, beer, smoked/salted fish and meat, baked meat, fermented tofu, miso, sauerkraut, yeast, chocolate, peanuts, brazil nuts, coconut, avocado, pineapple, banana, dried tomato and tomato products, soy sauce, tempeh, broad beans, and citrus fruit.

Coping with flushing

The tips listed below may help to reduce the number of flushes you have or help you to cope with them:

• Cut out caffeinated drinks such as coffee and tea
• Reduce or avoid alcohol
• Stop smoking to cut out nicotine
• Keep your room cool – use a fan if necessary
• Spray your face with a cool water atomiser
• Wear layers of light clothing that you can easily remove
• Have layers of bedclothes to remove as you need to
• Wear natural fibres such as silk or cotton
• Sip cold or iced drinks
• Have a lukewarm shower or bath instead of a hot one
• Use a cooling pad to help keep cool
• Keep a food symptom diary for 1-2 weeks and if you notice any particular foods bring on symptoms then reduce or avoid these foods.

Feeling exhausted and lacking energy for day-to-day activities (fatigue), is the most common side effect of treatment for NETs. The exhaustion can range from mild to severe and is usually worse during treatment.

Some people living with NETs also experience severe tiredness and fatigue after completing treatment. Fatigue could be linked to a heighted emotional state and could affect your emotions, relationships, work and other parts of your life so it is important that you recognise and try to manage it.

Tell your doctor or specialist nurse about your fatigue and any problems that may disturb your sleeping patterns, such as depression, anxiety and stress.

Regardless of the cause, there are a number of things that you can do to help manage fatigue, such as packing yourself, getting enough good quality sleep, keeping physically active and taking care of your overall wellbeing.

Try some of the following changes shown here to help you find a good balance between activity and rest.

If you live life in the fast lane, you may find it hard to relax and slow down. However, it is important to find some peace when you are dealing with difficult times during your living with NETs journey.

Relaxing activities called mind-body interventions can help you to:

• Lower your stress levels
• Reduce your fatigue
• Take your mind off other problems
• Deal with difficult emotions

Learning to relax your body and your mind can also help you to feel good and more in control of your situation. This can have a positive effect on your thoughts. You’ll feel calmer and more capable of thinking practically about your problems.

Relaxation techniques to try

• Physical relaxation
• Meditation
• Yoga
• Mindfulness
• T’ai Chi
• Music therapy
• Massage

One of the best ways to find a teacher or a course for these types of relaxation activities is by personal recommendation from someone you trust. Ask your doctor to refer to you to a physiotherapist, occupational therapist, or social worker that may be able to provide you with details about these classes at locations in your area.

Look for further information about local relaxation classes by:

• Searching the Internet
• Visiting local libraries, health centres, and community centres
• Reading local newspapers and magazines