Hello everyone Im new here - base of tongue cancer

Hi again Stephen ️ 

I did not use the toothpaste you mentioned, I actually am not aware of it. It sounds like something that is specialized and could be very helpful. I just used my regular toothpaste the entire time.

I stayed vigilant with using a mouth rinse several times per day (Biotene makes a good one), along with flossing and brushing regularly. I also made a salt-baking soda-water rinse several times a day. Just helps keep your mouth clean, as things get pretty gunky for awhile.  Also, I was prescribed a numbing liquid to swish around a few times every day to help with the pain from the ulcers (I couldn’t have made it through treatment without this).

It sounds like you have an excellent care team who is trying to prepare you as much as possible! I started treatment just about six weeks from my diagnosis, I feel like I didn’t have much time to prepare or process. However, Im extremely grateful to have received such swift care. 

I hope this information is somewhat helpful, sorry I am unfamiliar with the dental products you mentioned! ~Tara

stephen l said:

how do you use/ did you start before treatment ?

can you get oranurse on prescription?

what does SLS mean?

Just a peanut size blob on the end of the tongue last thing at night. Spread it over your teeth. I used it after treatment 
Oranurse you have to buy. Amazon. SLS is sodium lauryl sulphate. It’s what makes toothpaste foam. It can be irritant. Oranurse is SLS and flavour free free 

Hi Stephen,

I also have cancer in my tongue. I had surgery and 3/4 of my tongue on the left side was removed. Mine had spread to my lymph node on the left side. Surgery went well. Now just waiting for radiation treatments to start.

Pam

Hello All,

sorry ive not posted here for a while and when I came back I found it hard to find this post, so had to find an old email to pick up on it. 

I am meant to start my 6 week treatment from 3rd march and trying to get mentally in the right place.  

I have been constantly back and forth to the hospital but have my last two scans today. 

I am having an overnight stay for my first chemo and radio then radio the next day and home. then its back and forth for 6 weeks. 

main issue I have right now is fear, or of the unknown..

I am getting as much support as I can 

I will post on here as I go along and thank you for your support.

Hi Stephen..as soon as you find it difficult to eat don't try to tough it out, ask about a pump to feed overnight, as it's best to keep on top of things before they become a problem.. don't be afraid to ask for stronger pain meds when you feel you need them, and when you do get on the laxatives straight away..and keep your team informed about how you are coping.. and try to keep us informed, as I received priceless info that guided me through my treatment. 

stephen l said:

main issue I have right now is fear, or of the unknown..

Here is a good place to start 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

Hi Stephen 

Most of us, if not all, were scared and quite lost, we had been told we were about to start on an unpleasant but lifesaving journey.... not easy...but you will be given loads of support from oncology teams and from this forum ....tell your teams about any issues and concerns that you have.....a keep the forum updated with your progress.

Peter 

thank you so much I will do 

thank you Peter - I will keep updating on here. 

Hi StephenI

We have all been where you are “…Fear of the unknown ‘for many of us this seems to subside once treatment begins .

It a tough time that lays ahead but definitely doable .Take one day at a time , fluids fluids and fluids, essential to do daily exercises( given by speech and language team) and keep on top of oral care .Make sure you have  enough pain relief  and meds (especially over weekend).

Remember it’s over 90% success rate It’s really difficult and such a challenging time in your  life when your anxious brain takes over I kept mine busy by constantly watching my ipad , some people try meditation breathing relaxation exercise listening to music etc .

I took playlist on my mobile phone to keep me focused during radiotherapy they can also play your favourite radio station.

The group will also support you through this x

Debbie 
Tonsil Cancer T42NbM0 HPV+