This website is intended for an international audience, excluding the United States, Canada and France
This website is intended for an international audience, excluding the United States, Canada and France

Talk to your doctor about side effects

If you have any questions about the possible side effects of NETs treatments, then ask your doctor for more information. If you experience severe 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.

Managing skin flushing

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).

Avoid the triggers of flushing

Flushes in people with NETs can be triggered by emotions or stressful situations, by eating certain foods, or by drinking alcohol, caffeine, or hot liquids. Generally, you should avoid triggers, such as:

  • Alcohol
  • Large meals
  • Spicy foods
  • Food that contains tryptophan (e.g. red wine, chocolate) and serotonin (e.g. bananas)
  • Stress or particularly emotionally upsetting situations

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, and 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

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

Dealing with fatigue

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 can also 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 about your fatigue, and any problems that may disturb your sleeping patterns, like depression, anxiety and stress. Try some of the following changes to help you find a good balance between activity and rest.

Pace yourself

Keep track of your fatigue in a journal. You may notice that you have more energy at certain times of the day:

  • Plan to do things at the time of day when your tiredness is least severe
  • Spread out tasks like housework or professional work over a longer period of time
  • Keep supplies and equipment within easy reach
  • Ask friends or family to help you out with housework, childcare, pet care or shopping
  • Plan activities or outings to places where you can sit down to rest

Improve your sleeping habits

Relieving NETs pain

Some people with NETs can experience pain in and around the organs where their tumours are located. Pain may also be a side effect of some NETs 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. So consult your doctor to find out if they can recommend any treatments for your pain or ways that you can help to reduce this.

How exercise can help

Exercise might feel like the last thing you want to do as someone living with NETs, particularly when you may constantly feel tired. Research shows, however, that exercise is one of the best ways to improve your energy levels and help relieve fatigue in cancer patients.

Studies of women with breast cancer show that regular exercise may strengthen their cancer resistance, and even help prolong life. In interviews, some NETs patients have also said that staying active has made them feel physically stronger and healthier.

You may be more motivated to take part in an exercise routine if you’re in a group environment. This can also help you to make new friends and share your exercise goals.

The benefits of exercise include:

  • More energy, less fatigue
  • Better appetite
  • Better sleep
  • Stronger muscles
  • A feeling of well-being
  • Less depression and anxiety

Ronny, Living with NETs

“Exercise to me is also going out and doing gardening and mowing the lawn; walking to the shops or doctor instead of driving.”

View Ronny’s story >

Find local exercise activities

Always talk to your doctor before starting any new exercise activity or programme. For help in finding or starting a local program, ask them to refer you to a physiotherapist, an occupational therapist, an exercise specialist or a rehabilitation specialist.

Look for further information about local exercise activities by:

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

Start an exercise program to suit you

  • Choose a fun activity that you will enjoy
  • Start slowly. Begin with light exercise like walking, swimming, cycling, or Pilates
  • Find a group activity with people of a similar age group, or similar level of fitness
  • Go at your own pace. Slowly increase the amount and difficulty of exercise
  • Stop and rest if you feel sore, stiff or out of breath
  • If 30 minutes of activity is too hard, split it up into shorter 5 to 10 minute sessions

Relaxation techniques

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

Helen, Living with NETs

“Try and lead a healthy life with a good diet and doing exercise. If needed, ask your specialist to be referred to a nutritionist.”

View Helen’s story >

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Ipsen
This website is intended for an international audience, excluding the United States, Canada and France. This website has been developed by Ipsen in collaboration with those living with NETs and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit www.ipsen.com for more information about us. Website design and development by Kanga Health Ltd.