Tongue & Throat Cancer

debbiejeanne said:

how long
Enkido, I am 14 wks out from my last rad treatment and I still have the dry mouth, heavy coughing and cannot eat solid foods. I also have the peg tube. I try to eat different foods but don't have much luck. I can eat foods that can be chewed into baby food. Like, I ate pancakes this morning without any issues. I can also eat baked potatoes and foods like that. I don't ever eat if I'm alone in case I'd get choked. I wish you the best but also say, Be Patient....lol.
God Bless,
Debbie

Rick2924 said:

Calories During Treatment
Hawk

I finished my treatment for stage IV SCC base of tongue and bilateral lymph nodes a year ago. I had 3 rounds of induction chemo and 35 IMRT (7000 Gy) concurrent with Carboplatin.

A few days after each round of chemo I was able to eat pretty much anything I wanted. The problem will be the radiation treatments. After about 10 treatments, my taste was almost gone and I had no desire to eat. A few weeks after that swallowing became extremely difficult. Somehow I got through without a PEG, so I tried many different drinks. I tried Carnation HVC (560 calories), but found it to be too thick to deal with. What I ended up living on for 6 months was Ensure Plus (360 calories) mixed in a blender with 1/2 a package of Carnation Instant Breakfast powder (which added about 75 calories), 1 scoop of protein powder (about another 75 calories) and a few ice cubes or some ice cream. Sometimes I would add a little coffee to the mix for somewhat of a different flavor. I tried creamed chicken and beef, but I preferred the Ensure mixture.

Each one of us has a different way of getting through our treatment, so you probably will need to experiment and try different things. I went from 150 lbs at the beginning of treatment to 122 lbs at the end, so remember that consuming calories during this ordeal (including post-treatment) will be your number one job.

Good Luck,
Rick

ballonk said:

Praying For Your Boyfriend
Hi Cathy: I had a radical left neck dissection in July 2003 as a result of squamous cell carcinoma (SCC). I was originally diagnosed in 2001 with SCC on the left side of my tongue. I had surgery at that time; no radiation or chemo required. I visited my ENT every few months for a follow-up visit and was doing fine.

In 2003, I had a lump pop up on the left side of my neck which turned out to be a reoccurrence of SCC, requiring that I have a radical left neck dissection followed by radiation treatments which ended in December 2003. My surgery lasted about 11 hours; the first 2-3 hours the ENT spent scoping everything he could reach looking for additional cancer spots. He found none. He also removed my tonsils during this surgery as a precautionary measure. I spent two nights in the hospital and recovered quickly from the surgery. The most pain I had was from the tonsillectomy; not the neck dissection. I did not have a feeding tube during radiation treatments but did have to take pain medication for a few months in order to tolerate swallowing. I have numbness from my left ear down to my left shoulder, my left arm is weak and I cannot lift it over my head and my face and neck area is a little "lopsided" from the surgery but I have no problem with that; considering the alternative. I had difficulty swallowing and choking on food for a while after radiation treatments but my ENT dilated my esophagus (under mild sedation) twice over the past 6 years and that has helped a lot.

My radiation treatments were rough but I made it through and found a lot of helpful advice on these boards. It's been a long time since I logged in but I'm back and want to provide help to others where I can.

I know cancer is a very scary situation and can only advise that you keep yourself informed and keep your faith in God. With my first cancer occurrence, my 5 year survival rate was at 85-90%. After the second occurrence the cancer had spread to the lymph nodes in my neck so my 5 year survival rate dropped to about 40%. This past December (2009), I reached my 6 year mark without another occurrence. So many positive things have come my way as a result of having cancer and while I would not want to experience it again, I have no regrets about having to travel this journey and I hope I can help others along in the process.

While my doctor will not declare me "cancer free"; he feels I am out of the woods. There's no guarantee that it won't come back again, especially since it got into my lymph nodes. But I refuse to spend whatever time I have left here on earth worrying about something I can do nothing about. I've put this in God's hand and have prepared myself to die as best I can but I practice "guarded optimism" that God will allow me more time on this earth to be with my family and friends. However, I'm fully aware that it's not my call and that His will - will be done.

Be strong, go with God! Please don't hesitate to contact me if I can be of any assistance.

Kathy

hawk711 said:

Kathy's positive attitude
Kathy
I am new to the cancer game....I am starting treatment (chemo & rad) for tongue and neck cancer in a week. I am told that my salivary glands will be gone and that I'll have to carry a water bottle around with me all the time. I can handle all that, I just need to hear the stories like yours that you are healthy and looking forward to each day.
Please keep writing about your journey through the world of post treatments and being, "almost cancer free"..Your comments help us newbies out there to know that we can get through this and that the world will still be there, although a little different.

Thank you again for sharing,
Steve

enkido said:

Hello

I too had a tongue cancer diagnosis last June 2009. I had 35 radiation treatments that ended on October 16 th. and 2 chemo treatments.
Three months after radiation I still cannot drink or swallow anything. The feeding tube is my lifeline. I have begun putting real food into a food processor and getting it into my body. I don;t want to be delayed eating because my stomach is too sensitive. So far vegetables, cream of wheat and chicken and rice soup have been easy for me to handle thru the tube.
My question is how long did it take you to swallow water and food?
I still have pain in the back of my throat about the size of a nickel. It feels very raw and hurts. Anyone with this type of issues?
For dry mouth at night I have found Biotene Oral Balance Gel to help.
Thanks

dennis318 said:

your food intake
i finshed chemo and radiation after 6-7 weeks, i lost 40lbs, and was sick 2 weeks, i refused the tube, this was my choice, at times i wish i hadn't, but made it, anything co ld is a no no. the soreness in your throat, I too still have that, and lots of phlem, theytell me this will get better, WHEN???, I ate a lobter bisque soup from Kroger, smooth, no obsticles, went down well, the cream of wheats..same here, add milk to it and drink it, add sugar when cooking. eggs on well buttered toast, was this weeks advancement. wow, my eating hanots totaly changed after my throat cancer, i uses to hate water, i drink it my the gallons, it's get better every week, not day!, i went further and managed a hot dog, this was a really big step. The Doctor gave me a real good pain deadner, which i take before eating and this real has helped me, I would like to know when my voice will improve from a whiper to somewhat of a voice, and the phlem calm downs, this is really embarassing...

delnative said:

Hey, Dennis
Sounds like you're doing the same things I was doing when I was at your stage -- though instead of lobster bisque, I made oyster stew from a half-bushel of oysters I picked up at the dock. Loaded it down with heavy cream for calories, and man, was it good. Cream of wheat, too. If you're on to buttered toast, you're coming down the home stretch.
My voice didn't suffer as much as yours apparently has. It got kind of raspy, but came back in about a month, if memory serves. As for the phlegm, it got really, really bad for two or three weeks after treatment but started to get better after that. I'm 16 months out of treatment and I still have very minor phlegm, primarily in the morning when I get up. You'll get better, and soon.
--Jim in Delaware

nicki74 said:

hi, my father was recently
hi, my father was recently diagnosed with tongue cancer, stage iv.. he goes in next tuesday so the surgeon can put a scope in to get a better look to make sure we havent missed anything, and i pray that we didnt..at that time they will put in a trach and feeding tube.. he is 56 yrs old.. he has already lost about 30lbs, because the tumor under his tongue has been so painful that he could not eat solids, just basically yogurts, protein shakes and drinks... i want to keep him and my mom, and of course myself positive.. does anyone have any thoughts?

about a week after this first stay, he will then go in 5 days a week for 7 weeks for treatment.. the oncologist also said something about starting the induction chemo while he was in the hospital... is anyone also familiar with the induction chemo?

thank you so much for your time.. this website has been great!