I have blogged about my experience with tonsil cancer on my own blog (you can hit the link to the left under “home page” if you want to read more.)
But, now that I am 3 weeks post-treatment, I thought I would come on here and give a summation of my experience.
I am different from most of the people on this board. I had stage 2 tonsil cancer and no surgery. The cancer was on my left side, but my lymph nodes were radiated (as a precaution) on both sides. I had 35 sessions of IMRT radiation and two double doses of cisplatin. (My ears couldn’t tolerate it so we didn’t do the planned third course.)
I am writing this for people who are similar to me, as my experience was much different than most people on the board, and I thought it would be helpful to those with early stage tonsil cancer and no surgery, particularly those with IMRT radiation (which is supposed to be somewhat easier on the mouth and throat and may have accounted for my easier time with food, to some degree.)
First, I didn’t use a PEG-tube. While my eating became ever-restricted to avoid pain, I was able to eat a few soft foods (eggs, silken tofu, soaked bread/bread pudding) throughout and never had any problem with swallowing. I didn’t drink any processed drink (like Ensure), but instead, during the most difficult period—the last two weeks of radiation and the two weeks after treatment were over—I ate mostly protein smoothies, watermelon juice, papaya juice, miso soup with silken tofu, chicken broth with egg dropped in, poached eggs on bread pudding/soymilk, home-made apple sauce and tofu in peanut sauce. Yesterday (2 1/2 weeks after treatment ended), I went out for sashimi and miso soup. Today, I ate scallops. So, it’s getting a bit less boring.
Early in the treatment for about four days I tried to eat a wider variety of things that stung, using drugs to control the pain. But, I hated that. So, from then on, I avoided all foods that stung, which meant virtually all vegetables and fruits (with the exceptions above). But, consequently, I didn’t need any pain pills (including tylenol or the like) during the vast majority of my treatments. Because I wasn’t eating vegetables, I tried to drink a vegetable juice made by my partner once a day. It did sting, but I used a straw to avoid some of the sensitive spots (and stopped drinking it all together for my worst three weeks) aided by a little lidocaine sometimes.
While my taste got wonky (salt and sugar were off), I never fully lost my taste. Everything did taste duller. Already, that is changing.
I basically want people in a similar situation as mine to know that it is quite possible to go through the experience without a PEG tube, no trouble with swallowing (I swear by a humidifier in the bedroom at night) and with a minimum amount of mouth pain, if you are very careful about what you eat. I rejected a lot of foods along the way to find out what I could eat without pain. (Luckily, my partner was willing to experiment and eat whatever I rejected.)
I was fairly fanatical about my mouth care: rinsing often with the baking soda/salt mix, using Stanford Mouth Wash several times a day, flossing and brushing my teeth and using a tray with fluoride to soak my teeth for 30 minutes every night.. While I was doing this, my mouth stayed in pretty good shape and I was still able to eat noodles and mac and cheese, etc. through the fifth week.
The problem was that I ended up with a high fever for several days, followed by a four-day trip to the hospital (to get IV antibiotics), followed by a cold. In that period, I let my mouth hygiene fall apart and my mouth got much worse, plus it was the end of the treatment period. So, who knows if it my mouth would have stayed a bit better without those problems, but that is when I reduced my meals to the ones I wrote about earlier. This was also the period that I lost my weight (about 25 pounds that I could easily afford to lose). I had a lot more variation before my fever started.
I didn’t do very well with it, particularly with my ears and white blood cell crash. But, zofran (and ativan at night) completely controlled nausea. Purelax controlled the constipation along with lots of water.
I hope this will help someone who does not plan to use a PEG-tube. I am more than happy to correspond with you to help you through if your situation is similar to mine. My email address can be accessed from my blog (again, hit the link at home page)
Good luck all.
I actually already blog at blogspot so am not planning to blog here but for people with similar type/treatment protocol, I know more information is always better. Click on the blog link to the left under Vital Information—home page.
I started my treatment last Monday and I appreciate reading through these to find tips and information about what sort of perils await.