Hello everyone Im new here - base of tongue cancer

Stephen I refused Cisplatin and had Carboplatin.  I did not want to run the risk of long term Tinnitus. Carboplatin has some different, potentially equally nasty side effects.

In reality both drugs are for all intents as good as each other.  The difference in effectiveness is negligible in the end, especially if you consider that many don't complete the Cisplatin course due to the side effects which can be more extreme that Carboplatin.   

Each of us react very differently to the chemo drugs so what has happened to others may not happen to you.  Do your research and speak to your oncologist.

Hi Stephen.  In April 2023, I was also diagnosed with base of tongue cancer, squamous cell carcinoma, p16+. I was stage 2 and my right cervical lymph node was also affected.  Surgery not an option.  I completed 35 radiotherapies and 3 rounds of (2) chemotherapies-Carboplatin and 5fu.  

I did not have any extractions prior to or post treatment. I feel very fortunate. As others have mentioned, staying on top of your oral care pre/during/post treatment is essential.  I hope you will not have to have any extractions.  Sounds like you already have excellent oral hygiene

I understand that this is such a shock and difficult to navigate before you know what to expect.  I live in the U.S., and it was a lifesaver for me to find this forum.

It's really important to get the needed calories and hydration during treatment. I assume your team will inform you the required calorie and hydration intake that you will need.  I was beyond fortunate that I did not require a PEG/RIG, but I understand that many folks do. My team told me that if I did not eat and drink what I should every day as instructed, that it might come down to getting a feeding tube  So, I did what they told me.  The treatment is difficult, but you will get through it.  Once you start on day one, I feel that it becomes a countdown every day to finish.  Keep going.  Stay ahead of any pain as much as possible.  This cancer has a high cure rate and responds well to the prescribed treatment.

I am 18 months post treatment today.  So far, so good. I am so very thankful.  The caring folks on this forum will always provide support and guidance.  I wish you the very best as you navigate treatment and recovery. ~Tara

Thank you Tara, it was very helpful and gave me hope reading your post. 

I did have a dental assessment today and they recommended taking out my back wisdom teeth as they will feel the effects of RT.

they did say I had excellent teeth but if these back ones go wrong in the future they will not be able to get to them.

its scary as I do not know what the right thing is to do, but am lead by them and hopefully that will be enough to protect my other teeth longterm..

very happy to hear you are 18 months free from this

If it’s just your wisdom teeth I’d go with it. You won’t really miss them. I had to have one out on the treatment side after RT which caused me some worry. 
I suppose there is concern over how far you can open your mouth after RT too. 

Hi Stephen, sounds like they are getting you set up to be successful with your treatment, and not have to worry you with dental work or extractions later.  I'm sure they are giving you the best guidance possible.

I know it's difficult, all the unknowns, you have found a good place to ask questions and read shared experiences!  

Does your treatment start soon? Or, have they given you a projected timeline to start? 

Thank you for the very kind words, I appreciate it! ~Tara

Thank you Tara, im doing my best to maintain a positive mindset. 

projected RT start date is 26th feb

question - the hospital dentist recommended using GC MI paste plus along side the Duaraphat 5000 toothpaste.

I see its only available in the Usa. do you use it, is it needed along side Duraraphat or can I just use duaraphat ? 

thanks again 

stephen l said:

I see its only available in the Usa. do you use it, is it needed along side Duraraphat or can I just use duaraphat ? 

You can get it in the U.K.  I get mine from here 

Its expensive but you can get away with simply using a pea sized amount 

https://www.dentaldirect.co.uk/mi-paste-plus.html?srsltid=AfmBOoqdLxUjrF2Wc5r84ijgBjjnzzvT69RnvdWq74apSbrCq41korId

You can use just Duraphat. I did through treatment but then my mouth couldn’t tolerate the SLS so I switched to Oranurse and MI for a while. 

Hello Stephen

Just popping up to add my tuppenceworth. I had a stage 4 base of tongue SCC treated with just CRT two years ago & I'm fine now.

This forum was so informative & supportive when I was going through it, I'm glad you found it. Stick with us and ask anything or just have a rant. 

Sending love & solidarity

Catriona

Thanks Dani, ive just bought some from your link!

how do you use/ did you start before treatment ?

can you get oranurse on prescription?

what does SLS mean?

thank you Catriona for your input.

this does give me hope that I can get through this. 

well done on two years clear!