Hi - hope things are improving - usually within 10-14 days post surgery they have you eating. I would ask if you can try non chew foods, smoothies, milk shakes, pudding, ice cream etc... and if and when you do start to chew, it should be on the good side. Eating is fun but you need to be super careful of cleanliness after that. I would invest in a water pik and use it on the lowest setting, to get rid of any left over foods that can hide. Almost everyone who has had your surgery has a huge tongue afterwards. It's due to swelling and a build up of lymph fluids from the neck dissection. (the regular drainage pathways have been interrupted)
This should not deter you... just be super careful.

As for the rads and chemo... if they are offering get clarification - however, my advice is go with it if they have a good reason. Too often it is not offered and there are recurrences that can be deadly. Hugs and healing vibes to you.

Cheryl - I did get some more info on the chemo & rads, just still wondering about the about of rads (seems like a lot - more than 6 weeks).

Finally the Dental Oncologist let me eat - yay! Has me swishing every hour on the hour with baking soda/salt solution. Loosened some things up that were left over from the surgery. Doing well, eating things either liquified or in teeny tiny pieces. They derided the flap before hand and things are going much better. The right half of my tongue is a bit numb though, I think it may be permanent (that wasn't the area where the flap went) due to the wisdom tooth that was removed. Funny thing about the eating - it is exhausting, and I am still relying on the PEG for most of my nutrition. Believe me, when I chew anything it is definitely on the opposite side and I am super careful. Don't want another cheek bite to put me back in free flap surgery again.

Thanks so much for the info. This surgery isn't bad (I had very little pain) but it has taken me quite awhile to get the use of my body back. I had a bad go round with prednisone and didn't heal as expected. Left arm is still sore and recovering, PEG is still infected (staph) but hopefully that will be resolved within the next few days now that the buttons are off), still a bit tender in the area of the neck dissection.

Heather

Hi Heather,
Great to hear your eating and swallowing some. Keep working that process, sounds like you're on the way to success! Concerning your thoughts about radiation and chemo, I just completed radiation and chemo (For the second time in four battles) after a radical neck dissection in December. It was explained to me the way you described it in another post (Rogue cells that might not be visible during surgery or outside the margins--Insurance for the future). Treatment went well when I reference this trip to what all I went through eight years ago, not to say it was a cake walk but I maintained my weight, and didn't even come close to the nausea I endured the last time! Of course the chemo was different and there were different side effects to deal with but I think I was just better prepared for what I was dealing with at every level. My doctors are very pleased as my oncologist was telling me all along that it would be risky and possibly brutal the second time around and most don't get through it, which is OK, we would just go until I said "Enough, stop," which I never did. Sorry to be so long winded but I want you to have a comfort level in knowing some medical teams/tumor boards think the three combined treatments are a successful treatment model and I am sure your medical team wants to make sure this disease is GONE for you once and for all (As is my prayer/wish for you). My first fight almost nine years ago saw me coming back several months later with a recurrence, and my wife and I sometimes think back the "What if" scenario of throwing everything at it the first time around, but my first surgeon just did not really believe in radiation and chemotherapy, and was pretty adamant about it (May have saved me the recurrence but the last two fights were in totally different areas so I still would be fighting right now). If a second opinion makes you feel better by all means get that feedback, but when you're in a fight you're fighting to win so nothing is off limits, right? Put together the facts and go where your heart and your head leads you! Praying and best wishes for you!

Hi Heather,
I just came across your post and hope you are well and all of this is now behind you.
I recently had a mandiblectomy and have a new tongue far too big for my mouth. Can you share any hints on how to get through the radiation and peg tube process? I am also a non drinker , non smoker and am healthy other than oral cancer. Radiation scares me, so does the feeding tube. I've been through 5 surgeries, lived with a nose feeding tube for almost a month but not sure how I'll make it through this next phase of treatment. If you would share your story with me I'm sure it would help.
Thank you,
Susan

Hi Steve,

Thanks so much for your insights...I have one chemo and two rads under my belt so far this week and the rad tech told me this morning that my problems with pain with the trays they use for the rads are only going to worsen in the coming weeks. He said that my mouth would probably begin to break down next week or the week after and I would start getting the sores related to the concentrated doses of radiation. Yippee. Gonna fight it with everything I can find as far as natural therapies (not the crazy stuff, I'm talking aloe juice and vitamins).

The second opinion confirmed the first so its 40 rads (maybe with a boost) and chemo light. I am hoping it doesn't go that long.

And thank you for your long-windedness. I appreciate every word - all of it helpful. Will keep you in my prayers as well for a full remission and "all clean" call

Heather

Hi Susie,

I still feel like a newbie myself with this and you are certainly an old hand wight he years you have put it thus far with SCC! I have had my PEG since my second surgery in early February. It was painful to have placed, but luckily I was in the hospital and they had great drugs on hand. The heating pad they used was key in keeping the pain in check for me. It used heated water instead on electricity - amazing! I wanted to sneak it out with me when I left but it was connected to a machine that heated the water.

PEG for me has had some ups and downs, but I actually like it now. I had an infection that lasted about a month (staph) and once that was healed I am having no troubles at all. I gravity feed all of my liquid meals (which is about once a day as my doctors are most interested in me eating as many meals as possible through my mouth to keep my ability to swallow as long as possible). I have food allergies so the formula I am using is Isosource and to be truthful, I feel better on that than I do regular food. I am also using a product I found called Liquid Hope. It is vegetarian and from whole food sources - I am using that a s a supplement to the other. My PEG got blocked once, from using a drug to control acid reflux, and I had to go to the ER. They got it unplugged but it took about an hour of a nurse working on it and they eventually had to use a specific drug to do the trick.

As for radiation, I am a total NOOB (newbie). Only 2 in so far. I don't like them, the mask makes me claustrophobic, and I have to take meds for it. The rad tech says the lining f my mouth will start to break down next week or the week after and it will get really painful with the dental trays. I am looking for every way I can to mitigate those symptoms from a holistic perspective (aloe juice, rinsing with baking soda and salt, supplements - anything is worth trying as long as it doesn't involve voodoo or questionable substances).

As far as your oversized new tongue is concerned, my plastic surgeon (the Fabulous Free Flap Guy) said that radiation would shrink my flap down considerably. The bad thing is that I ended up biting my excess to something that had to eventually be cut out. I did it while I was in the hospital, under sedation, dreaming about beef terriyaki. I wish they had put something inside my mouth to prevent this, because now I probably have less flap than I need to complete the process without complications. Its very sore where they sutured it.

38 more rads to go, and up to 4 more chemos. So far so good.

Best of luck and happy to answer any additional questions that pop up!

Heather