Hi Anne,

Dont worry too much about the taste disappearing. It is only temporary. I;m the world's biggest foodie and this really worried and upset me at the begining as well. But 4 months after treatment now and i have abot 65% of my taste back. In fact i went into the new year (i'm from australia so we've already had or new year) with 5 Baci chocs, half litre of ice-cream and 15 Oreo cookies (dunked in milk of course to soften them)!!! Those days of not tasting now seems long ago to me and it will be to you soon too!! Good luck with your treatment - i'm sure you will sail through them.

Minh

David,
I always thought I was more susceptible to mouth ulcers, but I know there are folks out there who have gotten more than myself.
Were you able to keep your nutrition intake through your mouth, then? I figure I would likely be able to take in Ensure and such if not solids if my mouth and throat got very sore. Probably won't know for sure until that time I guess.

Anne

Anne, I toughed it out without a PEG tube. And tough is the right word. My oncologist and her nurse had told me that I could do it if I really applied myself. I had no idea it would be that arduous, and in the last few weeks of RT began wishing I'd had the tube put in.

But it is of course possible and lots of us have done it. It was a daily battle against fairly excruciating pain. Maybe because I've been a cluster headache person throughout most of my adult life, which is about the worst pain imaginable, I was better able to tolerate it. In any event I got through it with the lidocaine and pure determination - which is a quality you (and everyone else here) have already demonstrated by what you've been through to this point, so I'm sure you'll hang in there.

Even so I lost 30 pounds, not uncommon, and struggled to keep my daily intake of calories near to what I needed. Obviously I didn't always succeed...! By the two week point I was strictly on liquid nutrition and room temperature water, and didn't even begin to try very thin solids - like oatmeal - until a good 2-3 months post RT. Even now I still feel a lump swallowing, and usually take a liquid meal once a day.

My best to you. You're going to do fine.
David2

Hi Anne!
So sorry to hear you are going through this treatment. I'm so happy to hear that they could your tumor early. The loss of taste will only be temporary. I could tolerate fruit but favored berries like blueberries and blackberries and raspberries also banana felt great too. Many of us have trouble with spicey foods long term. I also have a hard time with over carbonated beverages-- but after a few sips I ususally numb to it.

It won't be so bad. Hang in there. I have no tongue at all (5% or something) and I can still taste fairy well-- 85% Tastebuds aren't just on your tongue but all over the oral cavity..Thank goodness!! You are going to recover and be back to your old self before you know it.
Wishing you a full and speedy recovery from this tough treatment.

XO Kate

David,
I don't know then. If I lose 30 pounds that would make me slightly over 80 pounds, but then I guess we are talking percentages here. I believe I will make it somehow, but don't know what I should do. I have not met with my doctors yet about those specifics.
Anne

Hi Anne,

I'm curious to know if the placement of a PEG tube for you was discussed? I can recall the pre-treatment nursing folks telling me that starting around the third week of radiation I wouldn't be able to "swallow my own spit". Actually, I had no choice as the facility where I was treated would not treat a patient for oral cancer without having the PEG installed first so as not to risk interruption of treatments later.

Good luck and you will make it as so many others have.

Bill D.

Hi,
I had my neck dissection plus more cutting on the tongue "just to be sure!" surgery Dec 20, stitches out Dec 28. The 28th is when the ENT discussed having radiation therapy, only because my really small tongue cancer had metastisized, and they usually don't. He said the tumor board ended up, after discussion recommending it. The radiation oncologist, whom I had met, was gone that day, and possibly the rest of that week, not sure. They are supposed to call me and set things up. So I don't know what they recommend other than IMRT, and nothing about chemo has been mentioned to me at all so I assume radiation is all. We live 11 hours away, so are hoping we can go next week, get the preliminaries done then, and I would just commence my stay there. My husband is going back to work, but will fly in for long weekends. I hope it will work. I do have a cousin in town, I know they will be happy to help out some, again don't know how much help I'll need. I am tougher than my 110ish pounds would indicate. I am just unsure how it all will fit together.
Anne

Anne, you're at the best cancer hospital in the country. So listening to your doctors would be the wisest thing you could do. In re weight loss, I started at around 188 so had the 30 to lose (going from a normal beanpole to a skinny beanpole). And as I recall that wasn't all from the RT. I'd had the neck dissection and some complications so spent 11 days in the hospital the month before and dropped some of it then.

If they recommend a PEG tube, take it. I can't speak from experience of one, but I know the alternative is a bitch!

You're in great hands.

d2

David,
Thanks! You're right about being in great hands. But it still helps to hear you say that! My RO has been gone and hopefully will be back early next week, because that is when my Head and Neck contact there wants me to first go in. I'll know tomorrow.
Anne

Anne, thinking of you today.
d2