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Start RT soon: What side effects can I expect?
Head & Neck Cancer | Last Active: Aug 10 8:39am | Replies (7)Comment receiving replies
They never told me how much radiation I got through my 30 x proton sessions after my right tonsil and right neck lymph nodes were removed. They just radiated my right neck. I didn't get any mouth sores. My neck was a little burned. Used AquaPhor on my neck, but don't use it prior to daily treatment as I recall. Just afterwards. Experienced lots of mucus for a long time afterwards. Ate a lot of mashed potatoes and used an immersion blender to puree things like soup. Chicken was almost impossible to swallow, as was anything rough. Taste buds started returning about 3 months post radiation. Very dry mouth for quite awhile. My dental oncologist said to eat everything "wet". Anything carbonated or spicy was impossible, but it eventually came back. I still, 3.5 years later l, still eat slower than I used to. It's a little late, but if you have any dental issues, like bone loss, it needs to be taken care of BEFORE radiation, because things don't heal the same after.
Also, I don't know if they can somehow cover/protect your thyroid because a year after radiation, they said I had developed hypothyroidism, which I'm sure was/is a result of the radiation, although they only radiated one side of my neck. And I was really tired for a long time afterwards. But things do get better!! 👍☝️🙏😊
Replies to "They never told me how much radiation I got through my 30 x proton sessions after..."
Ditto @roblem thyroid issues. I had one wing bruised resulting in hyper, then hypo, and finally after about one year leveling out as slightly hyper. I take a small quantity of Methimazole three times per week to keep me in a level state. I can survive without it but am on the edge of higher heart rate and nervous state of being, numbers will still be in normal range but on the edges.
Several times I have been "recommended" to have my thyroid ablated or destroyed, requiring me to live on artificial thyroid meds. That's modern medicine for the book entitled "Just Because You Can, Doesn't Mean You Should" I know people on thyroid supplements, a scary way to live. One doctor proclaimed that I have Graves Disease which I do not have, but now it is stuck in my medical profile. Apparently doctors never make mistakes and what do patients know.
Anyway, to summarize, protect your thyroid from here on out. Get twice yearly or more often TSH, Free T3 & T4 numbers checked. Good thyroid numbers equals good life quality.
And as for eating, 3.5 years means you are about half way to your new normal. Not sure if we just get used to eating differently. We are the last ones to finish at the table. The advantage: if something is served that we really don't enjoy or have a taste for (picky eater), we just say we have eating issues. "Grandma's Jello salad! I just love that. But unfortunately I can no longer work that through the throat. So sad."
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I had the same thing happen to me with the thyroid getting destroyed and getting hypothyroidism from the radiation about a year later too. Unfortunately, you will have to take a pill called Levothyroxine commonly known as Synthroid for the thyroid for the rest of your life. Definitely something to be aware of so if you will feel very fatigue 9 months out get a Thyroid (TSH) test. Things do get better.