My husband was dx with oral cancer, stage 1, in spring of 2012. In May he had surgery to remove the tumor (along with a sliver of tongue) and a "Frankenstein" slit to remove lymph nodes from neck. All margins were clean---no more cancer. It took him some time to start really feeling somewhat better and he never felt the same as before surgery.

In November he found another spot on his tongue and it was another SCC tumor. Because insurance was changing in January, we had to jump through hoops to find which doctor could see him in December AND continue seeing him in January. He saw the MO in mid-December but could not get into the RO until late December. Then we had to wait for insurance approval and a patient assistance grant before they would start treatment.

He started on 1/28 with Radiation & 1/29 with "Chemo" which is really Erbitux infusion & not typical chemo. He has the infusion once/weekly & the rad every day.

I am the "caretaker" but mainly in the form of trying to keep his nutrition up. He is still working full time as a computer technician for a Medical group here in San Antonio. I am a stay at home home-school mom with my own list of medical issues, so I only work 2 self-employed businesses when I can (in other words, I don't make any money right now!LOL!).

Like everyone else the biggest challenge is finding food he can tolerate & meds/supplements to ease the pain in his mouth/throat. Of all the crazy things, almond oil seems to soothe his throat as well or better than the "Magic Mouthwash" mix with lidocaine. I try to make him drink a milkshake with Boost in it at home daily. He seems to tolerate that, still, so if he can find foods he can tolerate, we hope to avoid a tube. I did tell him if he needs a tube, he needs one, but still hope he doesn't. We both need to lose weight, but he really shouldn't lose any weight now (and I prefer not to have the cancer diet---as I also told a friend during her chemo a few years ago).

We have no known cause of this cancer. He rarely drank alcohol pre-cancer (none now of course), never smoked (did chew tobacco but it was about 35 years ago), and is HPV negative. The doctors have suggested it COULD be from some chemical exposure. He worked in aviation for several years and was exposed to avgas for the planes. Prior to that, he worked as a grounds keeper, so who knows what pesticides, etc., he was exposed to. I've also read that some researchers think that alcohol based mouthwashes could contribute to the cancer, but no clear evidence on that. Just to be safe, we'll avoid that in the future. Kind of like having triple negative breast cancer. There is no way to eliminate something if you aren't sure what the cause is. Thankful that it was caught so early so hopefully this treatment will kill any potential cancer cells.

If Phil had written this it would have been about 3 sentences long. Sorry to be so wordy! I'm glad to have found this active forum. As I've looked for answers to questions, it seems that other forums came up that haven't been active in years. I'm already encouraged by some of the posts I've found here!

Lori, welcome to OCF. I have responded on a couple of your other posts. If you are checking out other inactive forums, their info could be outdated. Plus it may not be monitored and checked for accuracy. OCF abides by the Health on the Net Code which ensures correct medical info is given. Not all medical websites can say they are good enough to have that honor.

Not all oral cancer patients ever find out why they ended up getting oral cancer. There are quite a few around here with no known cause. It could be anything that causes the cancer, maybe the tongue was just your husbands weakest spot so thats where it grew, or it could be just his body being predetermined to getting oral cancer, there are a million reasons. Regardless of why he got OC, he has it and the treatments are the same weather it is HPV+ or if he got it from smoking or no known cause. Years from now things probably will change but at this time everyone goes thru the same treatments.

Here is a list of easier to eat foods. They mostly have a smoother consistance and are more mild than more other foods.

easy to Eat Foods List

When adding things out of the ordinary, like the extract, please check with the doc. There are many things that can interfere with treatments so always be safe and ask the doc if its ok. Im one who is always very cautious about everything, you can never be too careful. If something would have a negative impact or even worse affect the effectiveness of treatment then it could be a dangerous situation. It doesnt hurt to ask the doc about things. It keeps them on their toes

Best wishes with everything!!!

Hi - welcome - my tumor was similar but my dr threw the book at me the first time out - so I got the full gamut of treatment - it wasn't easy but I'm glad I did. I had nine of the precursors either. Try tossing protein powder into his drinks it will raise the protein and calorie count. Best of luck.

Welcome. My last treatment I went to a lunch buffet almost daily, and basically took a sample of everything to see what I liked. Most were vegetables, fatty cut meats, cream soups. Most of the weight loss during treatment, from cancer, is lean muscle mass, not body fat, so it's not good to lose much, and doctors get concerned when you do.

Hi, Lori,
Welcome. I am so glad that you found this site while Phil is still going through treatments. You will find a wealth of information here, from some amazing people. My path was similar to Phil's. I had a spot on my tongue which was diagnosed stage IV and lymph node involvement. I had 38 radiation treatments 5 days a week, and three "big bag" cisplatin treatments. Eating is still a challenge even after 3 1/2 years. Now, the fact that my teeth are really a mess really contribute to the challenge. I haven't lost any of them...but I see the dentist frequently (every 3 months) and he continues to "patch". I also use the fluoride gel every night. Good luck on your journey. It is a rough one, but the two of you will get through it, and Phil will eventually find his " new normal".