Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[Lesternixon]

Damage to the muscles and nerves as well as dry mouth are the main long-term issues. The ache and the sour taste vanish. Your mucosa merely needs some time to recover before the mucositis goes away. Nonetheless, the dry mouth has improved a little for me. Three years after treatment, I still get a cotton-mouth in the morning. This causes the mucus to cling to your throat, causing you to cough and spit up some pretty disgusting things frequently.

[CaptainAustrali]

Mate, very similar profile - you just have to wait it out.  The weeks and months following treatment feel like a slow-grind, the first weeks for me were worse than any time during treatment, and it took a long time for them to start getting better.

There's stuff that will creep up on you too, like constipation as a result of the meds, if you're unlucky, that can get BRUTAL, really bad, painful, physical wounds in awkward places.

I'm six years+ out of treatment and can't open my mouth the whole way anymore, but .. can open it enough.

You just have to park your expectations and do the best you can with what you're given, mate.

My advice is to fight too .. to fight with genuine HOPE that you can improve the situation.  After treatment, I just lay down and kind of waited to die, and the psychological and existential ramifications were pretty extreme.

I had to walk from Brisbane to Melbourne (dressed as a superhero and raising money for kids cancer research) to rebuild hope and meaning after letting it slip so severely.  If I were mindful and fought from the outset, I might not have needed to take on such a flamboyant Quest.

(not that I regret it, will actually go walking all around the perimeter of Australia soon - 16 July, check www.captainaustralia.online if you're curious - it has a kind of living diary of it all, what I did subsequent to cancer).

My two-fold advice is:

1) park your expectations, you just have to wait it out

2) that said, lean into your cure, not your disease.   Instead of trying every remedy to improve, every mouthwash, every quack cure and technique, try diligently to reduce cancer's footprint in your day to day life .. try and have fun, or do something meaningful.  You're still here.  Cherish that.  Do something with it.  I think that act, that choice to divert your focus elsewhere, does have a selfish impact in terms of reducing the harrowing wait and various harms inflicted by the treatments.

Oh and dont worry if you get a false positive at 3 months.  Having to wait another 2-3 months is a nightmare (I did), but after the horrendous insult your body has suffered, the scan can't differentiate between cancer and other harm and inflammation - so if you get a positive in the scan, dont freak out.

[Olddoug]

I had exactly the same thing and it was shit. I have finished about 9 months ago and the worst thing is no saliva. I believe it never comes back. I have to have a humidifier in my bedroom at night. I also wake up every two hours with my tung stuck to the top of my mouth and have to drink water. None of the gels work for me the only thing that gives me a bit of relief is Aquae dry mouth spray and oral 7 mouth wash. I find the Biotene products are rubbish. Good luck with your recovery. Doug

[Janine3220]

Hi Doug

Sorry to hear, it's tough. I can recommend a do it yourself mouth wash that mimics natural saliva. Salivary glands can regenerate but it takes time, lots, be patient but the glands need the right foods:

Do this:

1. Ensure you are well hydrated.
2. Ensure you eat a balanced diet and lots of dark green leafy veg (spinach, brocc, kale, rocket, brussels) pumpkin and sweet potato, cooked tomato (real soup, tomato juice, tomato-based meals), canteloupe,  red capsicums, mango, oranges and onions.  These veg (especially when raw) are rich in vitamin C and vitamin A - essential for good health.
3. Have a serve of fresh or frozen berries every day.
4. Ensure you have sardines, salmon with the skin on (fresh, wild, tinned with skin - Aldi is great) at least twice a week,  or daily fish oils - Blackmore's mini tabs or a liquid form.  See your pharmacist because fish oils may interfere with meds such as warfarin. Supplements are potent so always check with pharmacist.
5. These foods are rich in vitamin A which is necessary not only for our eyes, but also for our entire epithelium (the one-cell thick layer that keeps our mouth, entire gastro-intestinal tract, eyes, nose and skin moist)
6. Ensure you have protein (the size of your palm) at each meal eg 2 large eggs or 3 eggwhites and 2 yolks, lean 125g red meat (once or twice a week), 125g fish, 125g chicken, beans with pasta/rice, tofu, baked beans. 
7. Ensure your bread is good quality wholegrain (with or without seeds). It's your body, your gut, your health, invest in good bread. The fibre and nutrients will support the nervous system, provide some protein and lots of fibre : )).
8. Ensure you have a blood test for vitamin D levels. Essential for the prevention of disease and disorders (mental and physical). Then take a prescribed dose every day. See a GP/pharmacist.
9. Take an appropriate multi-vitamin if you have other issues and especially if you are over 50yo. The above is the fundamental but every individual has their own particular physiolgical, dietary, social, mental requirements. A dietitian, nutritionist, naturopath would put you on track.
10. Ensure you look after your oral health. Teeth need saliva. Gently brush your teeth upon rising with a probiotic toothpaste (Bloom's) and use a non-alcoholic probiotic mouth rinse (Bloom's), ensure you either floss or preferably use Piksters (interdental brushes) but see your dentist for the right size ($7 a packet but they are better than floss). See your dentist for a 3-monthly check up. Use an enamel building toothpaste. (I use three different types: probiotic (Blooms), enamel building (Oral B), and a naturopathic one (from Coles).
11. Rest, be active (move), think positively, live mindfully, socialise, and live your life and your special purpose : ))).
12. See a dietitian, nutritionist, naturopath if you are not a healthy eater or unable to eat, or have a normally limited diet variety.

The link has many great tips, different for different people.

To Fix Dry Mouth, Make Your Own Mouthwash

Dr. Hou suggests making your own mouthwash out of salt and baking soda to alleviate dry mouth. The combination of water, salt, and baking soda mimics our saliva.

1. Blend 1 cup of warm water with ¼ teaspoon baking soda and ⅛ teaspoon salt in a clean jar with lid.
2. Swish in your mouth for a few seconds, then rinse out with water.
3. Repeat every three hours.

The computer will not allow a link, so type in:   Memorial Sloan Kettering Cancer Center natural remedies dry mouth xerostomia

https://www.mskcc.org/news/natural-remedies-dry-mouth-xerostomia

For non-sugar, non-artificial sweetener lozenges go to a Naturopathic shop. I swear by natural remedies.

NB artificial sweeteners disrupt the gut biome, avoid at all costs.

If you have any issues with taste and smell, I would recommend a zinc supplement. However I cannot give you that advice, you would need to see a Naturopath for that. Why? A 10 minute GP consult will not give you  holistic care.

There is light at the end of the dark tunnel : ))

Janine

[Olddoug]

Thankyou for all your tips. I appreciate them greatly. Doug

[Janine3220]

You are most welcome Doug.

Hang in there. You will come out the other end, better than before.

Cancer is not a death sentence.

I might also recommend a very potent anti cancer nutrient for everyone. Organic Pomegranate juice available at Coles. 40 ml straight or diluted in your water for the day. It kills cancer cells.  Otherwise, pomegranates squeezed at home - very very very messy but if you squeeze the seeds inside a plastic bag to capture the juice you won't have so much mess;  and it stains. Juice from one pomegranate/day. If you can, I suggest  growing a pomegranate tree. The trees can grow in Victoria. God's gift to us.

: )) Today's a new day, a new beginning for your wonder-full life. Go for it : ))) 

[Ben0]

Hey Olddoug

Sorry to hear you are having a tough time.  I am a bit over 18 months post treatment now.  

I found the first 12 or so months post treatment pretty hard with difficulty eating, no taste, and jaw/ear pain from ulcer infection at radiation site in throat.  

I tried a few different options for dry mouth treatment too but found for me it was easier just to have a glass of water next to me to sip during the night. 

Still have saliva issues but they have lessened, and always drink alot of water whenever eating.  

Still wake up a few times during the night to cough up stuff and get a mouthful of water but definitely not as much as in the first 12 months.  

Just wanted to share my experience - and wish you the best. Ben0

[Olddoug]

Thanks , I appreciate all the feedback. 

[Janine3220]

Hi Doug

I am a health professional in two domains.

: ) It's my passion to share with you.

PS the pomegranate is based on research, clinical research. It has very powerful antioxidants.

One thing I may have forgotten to mention, when you eat those veggies, splash some extra virgin olive oil - Aldi has a very good brand of organic extra virgin olive oil about $4.50.   The olive oil is also powerful. Olive oil and other good fats eg fish fat, avocado, dry roasted nuts (unsalted and no fat) or raw walnuts when eaten with vegetables enable the vitamin A to be absorbed. That is vitally important   good fats+veggies.

Janine

[Olddoug]

I really appreciate all the effort you put into your reply's. The only problem is it has now spread to my lungs. I have been told that the throat has been cleared but stage four lung cancer. I don't know if I will get treatment or not.  They tell me two years of chemo and imuno. not sure if I am up to that.  I love your optimistic view of life and I think  A little has infected me. so thanks for that. I am a very  lucky old man to have a lovely wife , children and grandchildren so I have to be grateful for that.  can I ask what two domains you are in.  anyway thanks again for all your advice and help and I wish you and yours all the best.  Doug