Stage 4 lung cancer

Hi Nancy S,

Thank you for getting in touch with us.  My name is Adrienne and I’m one of the Cancer Information Nurse Specialists at Macmillan.  Welcome to our online community, I hope you find it helpful and supportive.

I’m sorry to hear about the recurrence of lung cancer in your portal cava lymph node and of the effect afatinib has had on your tongue.  Usually if a side-effect is severe and hasn’t gotten better with management, such as the mouthwashes you have described, a pause in treatment to allow the tongue to heal then starting again at a lower dose can stop this from happening again.  In some people however, further dose reduction is needed.  Please don’t worry if your oncologist reduces your dose.  Your doctor will work with you to find the right dose to target the cancer but with as few side-effects as possible.  In fact, studies have shown that lower doses of afatinib could be as equally effective as the standard dose in patients with EGFR-mutant advanced lung cancer.  You can read more about that here.

When restarting your treatment, it might be helpful to have some tips to keep your mouth healthy:

Drinks

• Drink plenty of fluids, especially water. If fruit juices sting your mouth, try less acidic juices instead – for example, peach or pear nectar, or blackcurrant or rosehip syrup. You could try freezing them in an ice cube tray as sucking on the ice cubes can soothe your mouth.
• Avoid fizzy drinks because these may sting your mouth.
• Try milk or milk-based drinks, such as malted drinks, milkshakes and hot chocolate. These can be from cow’s milk, goat’s milk or a plant-based alternative such as soya, rice or oat milk.
• Cold drinks may be soothing – try adding crushed ice to drinks.
• Very hot or very cold drinks may irritate a sore mouth. Some people find drinks that are lukewarm or at room temperature more soothing.
• Try drinking through a straw.

Food

• Avoid salty or spicy food.
• Avoid rough-textured food like toast or raw vegetables.
• Keep your food moist by adding sauces and gravies.
• Cold foods may be soothing – try eating ice cream or soft, milk jellies.
• You may find that taking painkillers before meals can help you swallow more easily.

Mouthcare

Keeping your mouth as clean as possible during your treatment will help to prevent or reduce side effects in your mouth.  Saltwater mouthwashes can help reduce soreness, if it is not too severe. To make the mouthwash, add 1 teaspoon of salt to cold or warm water. Rinse this around your mouth. Then spit it out and then rinse your mouth with cold or warm water.  That being said, always follow the instructions given to you by your oncologist. 

I really hope this information was helpful.  Please know that we also have a fantastic lung cancer forum where you can chat to people who are going through a similar situation to yourself and receive some peer support, which can be invaluable. 

You can also give us a call on the support line to talk things through.  It’s free to call on 0808 808 0000 (7 days a week, 8am-8pm) or you can send us an email.  

Take care and best wishes,

Adrienne

Cancer Information Nurse Specialist 

Ref:  AMc/KHa