My tumor was on my vocal cords. I completed my IRT's on 24 Sep 07. Towards the end of my treatments I was unable to talk. However, several weeks after my treatments were completed I had my regular voice back again.

Quite a few months back my voice started getting weak. ENT doc saw swelling on one side of my vocal cords which was a result of the radiation. He then referred me to Speech Theraphy. After several appointments she told me she wasn't going to schedule me for any more appointments since in her opinion I would not be getting my voice back.

Last month I went on a low dosage of steriod pills & at the same time I started running a humidifier all night. In the beginning it seemed like it was helping & then I couldn't tell the difference. I was on the pills for 3 weeks when I stopped. My hands were trembling + another side effect was thin skin on my arms and hands because when I brushed against something my skin would just kind of tear and a thin stream of blood would start. So, no more steriods for me. Purpose of the steriods was to reduce the swelling on my vocal cords.

The good news is that on my appointment last week with the Radiation Doc "i see no cancer" and the only alternative he has for my voice problems is a voice box and he says that is too radical a measure in his opinion. He scheduled me for my next visit 4 months out. So I have graduated from the every other month appointment.

My voice is more of a whisper and as the day goes on if I use it much, I can't even whisper. In the mornings it is more clear, but still a whisper.

I will be seen by the ENT doc in about 3 weeks and will be asking him for some recommendations on the problem with my voice.

This is rough on me.... I look the same, think the same and know what I want to speak, but I can't.

By the way, it gets pretty depressing at first thought. However, when I think I still have my hearing, my eyesight, and my ability to do whatever I want to do other than talk I really have it pretty good considering some folks. So I have to move on from the self pity.

Any experiences/recommendations out there?

This message has been edited. Last edited by: pete228,

Oh, Pete!

Am so sorry to hear about this latest development. I hope the ENT has a few options that you can try - if they're up-to-date, those guys really know their stuff. Get as many opinions as you can if you feel it necessary.

You were such an inspiration to me when I first started rads. I started a few months after your's were completed and I took a lot of your advice, including eating those really cheap Banquet TV dinners that you bought at Costco. We were lucky in that we didn't have to get the feeding tube, but we still lost taste buds and functioning salivary glands. Now that my mouth is back to normal (Yes! Normal!) I shudder when I think of those really nasty cheap meals. My daughter declared that they weren't really food but some recycled cardboard crap with poop seasoning. Sigh.

It worked for you; it worked for me. I could continue to chew and swallow and that's exactly what I was hoping for. Without working taste buds, who cares?

It's odd that a whisper can't be magnified to what is considered the level of normal tone without some hideous mic in full view. The Darth Vader sounding appliances are so Twentieth Century! What's happened since?

I'm going to start looking around for you too and see if there's anyone researching or working with something that might give you some relief. Both of us are close to some of the best facilities in the world - we should be able to find something, if that something exists.

Take care, buddy.

Mimi

Mimi,

as always, thanks for your kind words and offer to do some research.

great to hear that your mouth is back to normal. mine is too, except i have to do a lot of sipping water when i eat.

believe it or not, i still pick up some of the banquet swiss steak dinners. when i am in a hurry i will eat one. what is it, 5 minutes prep time and about 2 minutes worth of eating. i am careful about maintaining my weight. i weigh every a.m. and that will tell me how much i can eat. if i am up 2 pounds, i taper off on the eating. if i am down 3 pounds i will pig out. but the 1 pound differences i ignore.

yes, i should be doing research, but it is quite depressing for me after my speech therapist stated i will never speak normal again. so i guess what i worry about is that anything i find will only verify what she has told me.

my rad doc trained at M.D. Anderson. Not for sure where my ENT doc trained. however, he is also a ENT faculty member. i'll post what he passes on to me when i meet up with him in about 3 weeks. so i am confident that i have some of the top docs in the field.