+ Reply
Log in or Register to participate in these discussions
Introduction - rare nasal cancer and two young kids
Brybry
2 Posts

Hello!
I was diagnosed with olfactory Neuroblastoma in February. It’s an extremely rare form of cancer of the nasal cavities. I had combined nasal and brain surgery to remove the tumour which had eaten through the base of my skull.

I’m now into week three of six of my cancer treatment - combined radiation and chemotherapy. May is going to be a very long month.

As a Mum of two young kids, I’m finding it very challenging coming to terms with my diagnosis. My daughter turns one in two weeks and my son recently had his sixth birthday.

I’ve got dry mouth from the radiation - any tips would be much appreciated!

Living a moment at a time

8 Replies
Whitelilies
2272 Posts

@Brybry Hello……I am hopeful this link below is helpful to you/your family….

Regards

Whitelilies

(The director of this Agency, is a breast cancer survivor……)

shadowkins
20 Posts

Hi, I'm so sorry to hear about your cancer…head and neck radiation can be very rough.

I had 25 rounds of radiation on my eyelid and am all too aware of the dry mouth. Biotene has been my go to, they have tooth paste, mouth moisturizing wash and many other products. Another homemade rinse is salt ,baking soda and water. This is straight from my cancer clinic:

1 tsp baking soda

1tsp salt

4 cups water

Swish , gargle and spit. Make fresh daily

Did wonders for me. Keeping you in my prayers. Hugs !!

Cynthia Mac
3876 Posts

Brybry‍ , You’ve got the best recommendation already, as I know the mouth rinses really helped my Dad, but here are a few different ideas:

- if it’s not too hard for you to do so, try chewing a “juicy” gum, like Juicy Fruit or one of the “burst” ones
- ditto for some of the candies that do that
- Ice cubes might be too cold for you, but a few ice chips at a time might be tolerable.
- if you can keep a dish in the fridge with watermelon cubes and toothpicks, you can just pop one of those in your mouth every time you pass by the fridge.
- keep a water bottle with you so you’ve always got a ready supply of hydration (I have a water glass in every room of the house, according to The Laddie.)

I’m going to tag law1‍ into the conversation in case she has some additional ideas.

#drymouth #hydration #dietarytip #mouthrinse (recipe for mouth rinse is in the post next to this one)

D1955
120 Posts

@Brybry

Sending positive thoughts for your treatments.

My husband has intense radiation to his neck for CLL/Richters Transformation.

He lost all function of his salivary glands. We inquired with the radiologist if this would reverse , sadly in my husband's case it is permanent. During treatment he used Magic mouthwash to help reduce the ‘sunburn effect’

He now keeps a glass of water with him at all times to moisten his mouth. He did try mouth rinses but nothing will bring back his saliva.

Hopefully your saliva glands will not be permanently damaged.

D

Cynthia Mac
3876 Posts

@D1955 , you’ve reminded me that I knew a man who had radiation to the throat, and it damaged some of his salivary glands. He, too, had to carry a water bottle with him all the time after.

D1955
120 Posts

@Cynthia Mac

Sadly the radiation destroyed All of his salivary glands.

But the radiologist said at least they avoided his spinal column.

So many things you don' know going in.

The worst for him was the mask they have you wear during treatments so you can not move your head..

He has forgotten a lot about what he has gone through, except for that.

D

law1
698 Posts

Hello @D1955 and @Brybry,

I am glad @Cynthia Mac tagged me regarding dry mouth (xerostomia). I had all salivary glands fried during my radiation to kill my basal tongue cancer. Without salivary glands, saliva is no longer present, it becomes difficult to chew and swallow and your gums and teeth are at risk of decay. This is more than I wanted to learn even tho' the cancer was killed! Saliva rinses the oral cavity 24/7, and it maintains the bacterial balance within your mouth. Hence, xerostomia occurs. ‘Magic Mouthwash’ is expensive, it rarely helps throat pain from dryness, so it is crucial to carry water everywhere with you and sip it frequently whether or not your mouth feels dry. Additionally, ask your dentist for the best oral hygiene regimen….I use soft picks, then a water pic, then brush very gently using a fluoride toothpaste, followed by a gargle of ¼ tsp. baking soda and ¼ tsp. salt, mixed into a ½ glass of water. It's a drag sometimes but believe me --it is so important.

Overnight and during the day there are discs available to stick onto your gums which stimulate saliva, called Xylimelts.

IF mouth pain should increase, I use a red, liquid topical anesthetic gargle called Lidodan 2% available upon request from some pharmacies. It does not need a Rx. It, too, is expensive, about $20.00 for a few mgs. Some folks say it tastes nasty, but since my taste buds were also destroyed, it saves me from the horrid taste!

I hope these tips, in addition to the other replies, will help you get used to the dry mouth.

And, the mask mould for immobilizing your head during the radiation makes a grand Halloween costume! (It helps if you are not claustrophobic).

D1955
120 Posts

@law1

Thankfully my husband has not ever had mouth soars and with dentures he has not to worry about tooth decay.

I kept his first mask but recently cut it up as it was not something he wanted around .

+ Reply