Head and neck cancer - Managing radiotheraphy side effects

[Jay-Cee]

My father (75 yrs old) has advanced head and neck cancer - malignant melanoma in the mouth. 2 months ago he underwent a surgery to remove his soft palate, left total maxillectomy and radical neck dissection. Post-surgery he has been on nasogastric tube for feeding to-date, and swallowing and speech difficulty. The doctors are recommending to start radiotheraphy but not been providing much information on managing the side effects. Am hoping to hear from people with similar experience - how to manage radiation side effects for patients on nasogastric tube with swallowing and speech difficulty. Thank you.

[GHT]

Dear Jay Cee It sounds like you are feeling pretty unsupported and in the dark about how to help your dad. It may be useful to talk to hospital social work dept re palliative care help. I am lucky that I haven't had to use it but lots of ppl on this site find it a great help in managing advanced cancer and side effects. Which state are you in as this info may prompt more informed folk to offer their knowledge based on where you live. There is also the RDNS who may put you in touch with right help. Drs can be so tunnel visioned that anything outside their own wedge of speciality is beyond their awareness. They are not natural multitaskers! Best wishes GHT

[Paulpwtierney]

Hello , not sure is this helps but I recently completed 7 weeks of radiotherapy in the throat. I asked the radiotherapy nurses at the start if they had any tips on surviving this well. They said - drink water. As much as possible. It is easy to fall into the trap of reliance on the PEG or other tubes and not swallowing for days. My oncologist was always stressing to me to drink water even in a few sips per day just to not lose the ability to swallow which can become a major issue. I found motivation during the 7 weeks difficult. You feel like crap and have no urge to really do anything. Everything becomes a struggle. It is hard for family as just saying do this do that doesn't really work. I did find that once the oncologist told me I would be having radiotherapy I had no idea what that was until weeks later when I finally had the mask made and saw the machine. I learnt to just accept and go with the flow in a public hospital. Not much else you can do. Good luck.

[Jules2]

It was recommended to me to use salt and bi carb mixed in water as a mouth rinse. I drank lots of cold water to try and minimise burning. Worked for me although everyone is different and has different areas radiated. All my best to you and your dad. Julie

[Jules2]

It was recommended to me to use salt and bi carb mixed in water as a mouth rinse. I drank lots of cold water to try and minimise burning. Worked for me although everyone is different and has different areas radiated. All my best to you and your dad. Julie

[Gunbuster]

Jay-Cee, I have had two lots of H&N cancer over the last 2 years. My first was primary tumour of the floor of mouth that required a radial forearm flap graft and a selective bilateral neck dissection and temporary tracheostomy. I didn't have chemo or radiation. ^ months later I had a stage 4 recurrence in my level 4 right anterior neck whch required a radical neck dissection. I had 35 rads and 6 rounds of chemo (cisplatin) as a follow up and have been cancer free since Dec 2013. I had a PEG for my radiation but I maintained as much oral hydration as possible. The worst side effect (for me) was the mucositis (thick ropey mucous) that was very difficult to expel and impossible to swallow without vomiting. I found a mix of soda water and citrus (I used pink grapefruit)was best for loosening and breaking it down, you will need to experiment with the mix as the citrus can burn an irradiated mouth. I also tried to have smoothies and milkshakes with protein powder to boost my calorific intake. Be aware that the sense of taste will be severely affected by the radiation and it can take 6 months or more for it to return and not always completely. Temperature of food and drink is crucial as well as the sensitivity levels in the mouth go through the roof. There is a lot of trial and error in working out what works and doesn't and I have no doubt that your Dad will get cranky and upset but remember he doesn't mean it and it is not personal (I apologised every day to my wife and thanked her every second). Talking will become difficult in the latter stages of the radiotherapy as his mouth becomes sore but will improve 2 to 3 weeks after treatment finishes. Best of luck to you and your Dad and remain positive you can get through this. Cheers Alex

[mark2709]

Hi Jay-Cee, This issue is really complex. Firstly, most folks who I've spoken to about this had Squamous Cell Carcinoma (SCC) of the mouth, not melanoma. Secondly, there's different intensities of radiation, and different places which they direct it at. In my case (oral SCC), the side effects were extreme at the time, and took a long time to recover from (3-6 months), but I stress that this is not everyone's experience. Personally, ulcers throughout my mouth made pain a major, major issue. Unlike your dad and many others, I did not have any kind of feeding tube. BUT, I was 43 at the time, and hence my recovery and quality of life afterwards has seriously surprised the doctors. Once again, others have not had this recovery experience. So...my advice is to book an appointment with the radiation oncologist. Write down all your questions, and get them all answered to your satisfaction. If you still have questions, then pursue the issues once again. You and your dad must have answers, to make an informed decision. Such as: 1. Prognosis with radiation. 2. Prognosis without radiation. 3. Quality of life post-treatment. 4. Side-effects during treatment. 5. Permanent side-effects. 6. Process of administering treatment - is painless, but can be traumatic for some, esp. those who may suffer claustrophobia or similar. Product recommendations (subject to clinician approval, of course): Peter Macallum Cancer Centre in Melbourne make a mouth wash under their own brand. Marvellous stuff. If and when oral intake is needed, Nutricia make Fortisip protein drinks which taste good, and did not aggravate my ulcers. Must be factory-mixed. Self-mixed powder products STUNG my ulcerations because of undissolved particles. All the best to you and your father on this difficult journey. Don't hesitate to ask if I can be of further assistance. Regards, Mark.

[PhineasP]

I'm starting radiotherapy for neck cancer (post parotidectomy) next week. I found the above posts on this topic very informative. I am 72 and a full time carer for my wife, who suffers from dementia and poor mobility through osteoarthritis. I've always given her care top priority, so it's a bit of a turnaround to have to put me first, with daily medical procedures for 5 weeks. However this is my second round with cancer, I had a prostatectomy in 2010, and also an acoustic neuroma (benign) excised in 1995. I'm glad to have found the forums and will check in from time to time. Jim

[mark2709]

Hi Jim, Best of luck with your treatment. You should check with your treating clinicians as to what kind of condition you can expect to be in during and after radio. Speaking purely from my own experience, there is no way I could look after anyone else but myself - and sometimes not even that - for a period of about two-three months in total. Radiotherapy programs are all different, and highly customised to the individual, so my experience may not be yours. So please check with your treating practitioners. It may be that you will need to engage respite care for your wife. Best wishes, Mark.

[PhineasP]

Hi Mark Many thanks for your post. I thought I had most of the bases covered but your comments have hit home. I will give more thought to respite as I realise I will not be able to maintain the level of care I have been giving to my wife. I'm talking to her aged care provider today about extra cover, and I am in contact with a number of residential respite providers (nursing homes) that have said they will be ready to step in where possible. Kind regards Jim