I was going to put a 2019 review up next but talking to somebody on the Macmillan forum https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum I think I’ll just put a few words up about treatment in general and how to be proactive. I’m not feeling brilliantly well organised just now so I’ll just jot a few things down in no particular order as they come to me. Lazy git that I am.
First, STAY OFF GOOGLE. I can’t comment really on chemotherapy so if you’re having Cisplatin along side RT drop Hazel a line here https://radioactiveraz.wordpress.com She is a mine of information.
Radiotherapy is not in itself painful but there is collateral damage to your mouth and throat and the side effects generally kick in around three weeks but by the end of week two you’ll probably have an itchy scratchy throat. Keeping your mouth in tip top condition can help reduce these side effects. There is research to show people with active gum and periodontal disease do much worse with RT so my advice would be theft if you have time get your mouth in the best of health. You get a dental exam as part of pre-treatment assessment in hospital but a visit to your own dentist to get a thorough clean is a good thing to do. Then work on it when you get home. Floss twice a day to get those gums nice and hard and make sure you get some high fluoride toothpaste from your nursing team so that you can start before treatment. The prescription toothpaste is Duraphat 5000.
There are protective mouthwashes and gels available OTC but they are expensive and available on prescription. Caphosol and Gelclair are the common ones. Some oncologists are wary of Caphosol as there isn’t any concrete evidence to support its efficacy but there is masses of anecdotal.
From Wiki and there are many other sources
Head and neck cancer
Caphosol has also been associated with low occurrence and severity of oral mucositis in a registry of cancer patients. The registry data provide further evidence to support the use of Caphosol to treat oral mucositis and suggest that Caphosol is associated with a low occurrence and severity of oral mucositis with high adherence to treatment as well as high levels of satisfaction from both patients and physicians.
The registry analysed the effects of Caphosol in head and neck cancer patients along with the frequency of patient dosing, adherence to treatment, and patient and physician global satisfaction assessments. Patients at risk of oral mucositis were given Caphosol and instructed to rinse 4-10 times daily depending on the severity of the mucositis. Patients and physicians completed questionnaires on the symptoms of oral mucositis, mucositis severity and satisfaction with the treatment.
The results showed that 88% of patients receiving chemotherapy and/or radiotherapy for head and neck cancer who had used Caphosol experienced no or low grade (mild-moderate) oral mucositis, and 44% experienced mild or no oral pain. Furthermore, the vast majority of head and neck cancer patients (79%) and physicians (78%) were satisfied with Caphosol as a treatment for mucositis.
I was given both once my mouth was ulcerated which is a tad too late. Ask for it as soon as treatment commences and use prophylactically
There might come a time when you find it difficult to keep brushing. I managed with my electric toothbrush and a sensitive head right the way through but there are softer options like Curaprox. Amazon have them.
Drink lots…… 3 litres a day. Heaven knows why this helps but it really seems to.
Some dieticians say to bulk up before you start treatment but I’m not convinced this helps. Being fit is a definite advantage but being fat on purpose seems daft. Yes, you can lose weight if you’re not eating but it makes more sense to make sure you can keep eating. Despite getting myself into a fix at around three weeks ( inadequate pain control) I lost only about 5 lbs. So we come round to adequate pain relief. Pain is better managed preemptively…..very important word, that. Not reactively. Take your meds on a rote basis and make yourself a list of when everything is due. You can take a heck of a lot of morphine if you need it. I managed 100mg a day plus 40mg of long acting without problems…….just remember the LAXIDO ( morphine has to be taken with laxatives or you get really badly constipated)
Food replacement drink. These are horridly thick and sickly sweet but one they come in at 2Cals per ml and you need 2500 Calories a day so you can see they are invaluable. Don’t stint. Dilute them if you need to. Rinse your mouth out afterwards. We are quite prone to oral thrush and the yeast thrives in the very sweet stuff that’s keeping you alive and well.
You’ll be given neck and jaw exercises. Do them. Do them before you start.Neck exercises here https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Prevent_and_reduce_stiffness_caused_by_radiation_treatment.pdf and Jaw and throat exercises here https://www.royalberkshire.nhs.uk/patient-information-leaflets/cancer%20information%20head%20and%20neck%20swallowing%20exercises%20head%20and%20neck You can miss the lip ones out.
All this seems really onerous and you might think what’s the point? But really, you might feel crap but if you can spend a little time doing some of them you’ll really benefit.
Moisturise your neck which will “burn” with RT. I used Cetraben through the day and Aloe Vera gel applied liberally as soon as each session was over. My neck got red and flaky but nothing to write home about
Finally I’d like to touch on damage to salivary glands. This can be quite severe and although my saliva has recovered maybe to 75% of what it was it will never be perfect and it’s taken two years to get here. You need to protect your teeth which rely on normal saliva to keep them safe. Artificial saliva can keep your mouth moist but keeping your salivary glands actually functioning must surely be a better thing. Stimulating them with sugar free chewing gum is key and if you throw xylitol into the equation you’re quids in; food for thought.
There is a separate post here on acupuncture. Have a look. It’s made a huge difference to me.
Really finally……. Do as you’re told by your support team. Don’t be brave trying to struggle through when there are ways and means of making the passage to cure so much easier and do use your daily contact with your radiographers to bring up concerns.
Really really finally. A positive attitude helps you cope with being miserable but there’s nothing wrong with having miserable horrid desperate days. Miserable people get cured too, they just feel worse so don’t be brave just be you because the rotten trampled frightened you is merely hiding the real you that will emerge in the end.