Hello to all,

I've just registered today for the OCF and hope to be able to learn a bit. I've had throat CA for over two years now.

My biggest problem currently is excess mucus, night coughs, no saliva, and am NPO, just had a hospitalization due to aspiration pneumonia, requiring a PEG tube placement.

I hope to share also and help others when able.

My best regards to all affected by this problem in any way.

Hello Pogi,welcome to our group reading old posts helped me a lot and any question you have just ask in general section most likely someone will have answer.

Thank you Paan. I just logged on today and read your welcome.
Had been really busy in a second clinical trial for several months, now stopped because of mets.
Also had to undergo a tracheostomy awhile back-now can no longer speak.
I should be checking here more often as I wait for next Oncology visit, I think only repeating chemo for the 4th time, after two immunotherapy trials also, is my only option.
It helps to read, you are correct. I hope this finds you well!

Firstly., you need a good suction machine and you need to use it often. I have one (also Nothing my mouth) and between that and my waterpik I am dealing with the mucus. A lot of the mucus we experience is that which everyone has all night but they swallow it without knowing it - for us - we have to deal with it. This is the least pleasant task I have but I will live! I gave the GENTLE waterpik heads. I set it on low., fill the reservoir half full if warm water and mouthwash (non alcohol of course) I then lean over the sink and direct the spray all over my mouth. You would be amazed at how much gunk comes out. It feels great when it is over. The suction machine has to be cleaned every day or every other day. Again, not my favourite task but a necessary one. Try it. If you have feeding tube issues let me know. I am hardly experienced compared to many (my tube put in 1/22 but I have been learning.

Donna (Pandora99)

Suction machine really a must for the phlem and saliva. This is the one I purchased for my dad. It's portable and can be used in the car.

Vacuum Aide compact by Devilbiss

He refuses to use water pick. Said causes to much pain.

Hello, I was biopsied in March and had two types of cancer on my tongue. Saw ENT surgeon three weeks ago and had cat scan two weeks ago. Will see surgeon in two days to determine course of action. He thinks it could be a hemi glossectomy. I am so new to all of this. What questions should I ask him at this meeting? Thanks for input!

Patience

I am sitting here trying to think of all the things I wished I had asked 19 years ago!

The basics are a good place to start
1). What exactly will you be doing
2) will you be doing a free flap (involves moving tissue etc into your mouth from a limb then covering that spot with a graft. (And no - I have never figured out why it is called a “free” flap!)
3). How often after the surgery will I see you (Surgeon)
4). What painkillers will I be given and for how long.
5) Do you have a list of things I can and cannot do post surgery - ie brushing teeth or showering, etc
6) who is my GO TO PERSON for questions
7) what do you recommend I use to communicate (Boogy Board, Pen/Paper - Whiteboard ?
8). Will I have a tracheostomy and if so for how long (I was not prepared for this one!)
9). How soon do I see the speech language pathologist?
10) when will the FULL post SURGERY pathology be ready to be discussed?
11). How long will I be in hospital
12). How much help will I need at home?
13). What can I do to get ready for the surgery ?
14). Will my tumour be HPV “typed”
15). What is the clinical staging of my cancer? I understand that may change after final pathology
16). What tests will be required pre snd post surgery
And so many more. I am sure others will chime in.

Donna. (Pandora99).

Hi and Welcome, June 2022 I too was diagnosed with 2 kinds of oral cancer , scc on the left side tongue and HPV related on the tonsil and in the left node of 1 . I have a long way to go but I also have come along ways . Recovery feels so slow sometimes. I had a hemiglossectomy from forearm skin to rebuild tongue. 12 hour procedure . Had 33 Rads and 7 chemo sessions . Taste is barely coming back now but is improving , no saliva yet but becomes a problem during exercises and at night . Taking Pilocarpine but doesn't really work. High Protein shakes I make & drink 4 per day , eat some soft foods in-between. A lot of the side effect have past but there still alot left. So far I'm here today and optimistic in the future .

Patience,

Welcome to OCF and so sorry to hear of your diagnosis. There are lots of people here who will help you. The list shared from Pandora is solid. Once you have more details, please post them here. We can offer suggestions on how to cope and recover but it really depends on the procedure details and post surgery treatments (radiation? chemo? etc).

Best,
Nels