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#199185 10-04-2019 11:41 PM
Joined: Sep 2019
Posts: 110
Likes: 14
Paan Online OP
Senior Member (100+ posts)
OP Online
Senior Member (100+ posts)

Joined: Sep 2019
Posts: 110
Likes: 14
So glad to have found you guys,I have stage 4 tongue cancer HPV negative met with my doctors in Charlotte they will remove 3rd of my tongue and 6 weeks rads I have been reading here and I have already started taking some extra protein supplements and have started liquid multivitamin christine mentioned in her post ,thanks christine ,I will appreciate any advice surgery is week from now thankyou guys for all info I have read here

Paan #199186 10-05-2019 12:43 AM
Joined: Jun 2019
Posts: 244
Likes: 2
"OCF across the pond"
Gold Member (200+ posts)
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"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
Hey Paankaj,

I'm so sorry to read of your diagnosis. You are in good company on this site though. We're a great family.

Everyone is unique and have had different experiences, so sharing what works well may or may not work for you. The best thing is time and patience.

I too had a stage 4 tumour in my tongue. I have had most of my tongue removed, had a radical free flap reconstruction (RFFR) which was taken from my left arm. My surgery was 8 weeks ago. I was in critical care for 3 days, and in hospital for a total of 9 days. I am currrently just over a third of the way through my 33 doses of radiotherapy (which will end on 31st Oct)

I suggest taking a small whiteboard and whiteboard pens with you so that you can communicate. It eased my frustration very quickly smile

When I had the tracheostomy in, I hated it, so as soon as I was given the go ahead by the speech therapist to practise speech, I would say the alphabet several times a day and name everything that was in my room. It was a lot harder than I was expecting it to be, but that was down to the swelling in my throat. It does get a little bit easier every day, just take each day at a time. I found that, at first, I was taking every hour at a time. The sudden fatigue is a thing.

Before your sugery, and this is very important, eat all your favourite foods. Eat and enjoy eating. Have your favourite pudding, have that extra helping. You won't be able to eat proper meals for a while and this really helps reduce cravings. My husband took me out to my favourite seafood restaurant where I had an entire seafood platter all to myself (oysters, lobster, crab, king prawns, crayfish, shrimp etc) It was beautiful. My sister took me out for amazing gelato.

A positive attitude does help. You're going to have major surgery, it's scary, but you've got a huge team of fantastic professionals helping you back to your new normal. Take your time and also listen to the team.

Good luck. We're here with you.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients

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