My husband has just completed session 2 of 6 Chemotherapy with targeted immuno therapy for stage 4 primary bowel cancer and secondary liver cancer.
He is suffering really badly with sore mouth and tongue and the Diflofam and gels he has been given and not helping him at all. He is awake most of the night in pain with it and is reduced to tears often.
Does anyone have any recommendations for things they have or their loved ones have found to work?
Many Thanks
L
Posted on behalf of my colleague.
Hi Lanniefffe31,
Welcome to the Online Community. My name is Fiona and I’m one of the Cancer Information Nurse Specialists here on the Macmillan Support Line.
I’m sorry to read that your husband is suffering with a sore mouth and tongue as a side effect of his chemotherapy, we know that this can be a side effect of some chemotherapy regimes for up to 40% (forty out of one hundred) of people. It is sometimes referred to as mucositis. It is more common with certain chemotherapies such as 5FU or capecitabine which are often used to treat bowel cancer and can also be caused by some immunotherapies.
Depending on whether he is receiving 5FU or capecitabine, or not, your husband will have been assessed for DPD deficiency prior to starting chemo as this can influence how severely he could develop side effects. His Consultant will review this before his next cycle and may decrease the dose.
It sounds like your husband is having a great deal of pain with this, I’m sorry to read that he is being reduced to tears at times. His mouth pain can prevent him from drinking which obviously is very important whilst he is having treatment.
Cancer centres use a scoring system to assess whether someone needs to be reviewed and he would score as a ‘4’ on a scoring of ‘1 (mild) to 4 (severe)’. In view of the severity of his pain we would advise him to contact his Treatment Helpline today and let them know what is happening. He should have been given an alert card like this one with a 24 hour contact number on it. They can assess him and arrange for him to be seen right away if needed. If he is unable to reach anyone on that number he should call 111 today for advice.
In the meantime, he could try sucking ice chips which may help alleviate the pain a little.
Supporting someone you love with cancer can be very difficult so please do take time to look after yourself. Sometimes people gain strength in talking to people in similar situations. Our Online Community Friends and Family forum might be a good place to start.
You’re welcome to give us a call to talk about what’s happening over the phone with one of the nurses on our Support Line. We often find that we can help people more after doing this as it allows us to ask questions about your individual situation.
I hope this information helps to guide you.
Best wishes,
Fiona S
Cancer Information Nurse Specialist
Ref: FS/HK
