Start RT soon: What side effects can I expect?

Hi abes1068
If you could get Proton Radiation Therapy rather than Photon, it would certainly help you out side effects and recovery wise. Any chance of that?
Everyone’s side effects are different. There is really no way of knowing. Some posts in this group can give you ideas but we all had unique experiences. However, we are also all still here living life, so there is that to consider.
And could you define ENE please? I’ve done a lot in life but doctor isn’t one.

My case was extremely similar to yours. TORS for base of tongue tumor. Also neck dissection. 2/25 lymph nodes positive. Primary tumor had clean margins. I had Proton instead of Photon RT . 60 GY on the postive side of neck. 54 Gy on the other side. Also 60 Gy to tumor bed inside throat. First two weeks were Ok then... I could hardly eat anything during treatment. I lived on creamy mashed potatoes with butter. Cottage cheese. Egg’s anyway cooked, peanut butter and jelly , banana , power shakes with powdered supplements and boost , apple sauce, baby food jars, soups and noodles, Boost/ ensure cans pack a lot of good calories. I had to FORCE myself to eat. Salt throat rinse several times a day helps. Ask your Doctor about Magic mouthwash. It DOES get better a month or so after treatment. It is a tough battle but you will get through it. Good luck and have Faith.

I had 35 rounds (7 weeks) of Photon radiation for a total of 70Gy and 3 rounds of cisplatin chemo for tonsil cancer back in 2008 but no surgery and I did research then and found in an England Journal of Medicine that honey could help soothe the throat pain from the mouth sores you will get. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me.

I would use Manuka honey which you can find on Amazon that scores at least UMF 10+ and MGO rating of 100+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey.

ACES + Zn® supplement. If you google it contains vitamins A, C, E selenium and zinc. I think it helped me regain my taste faster.

Hope this helps and you will get better. Good luck on the journey.

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!! 👍☝️🙏😊

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.

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."

Hello @abes1068.
My photon radiation was 70 Gy centered at parotid salivary gland, facial nerve area at base of skull. I had oral ulcers/sores mostly on side of tongue and inner cheek. Sense of taste was way off. Favorite foods not good. Pain was controlled with Magic Mouthwash and oral Lidocaine gel topically plus oral Tylenol. Seven weeks of this with worsening every week. Skin irritation/burning is quite real. Make sure your skin is clean with no lotions for each session. Soft or liquid diet to keep calories coming in for much of that time. Bland things like mashed potatoes and Cream of Wheat and cottage cheese seemed best for me. Smoothies with added protein powder give you nice options but fruit added can be irritating. It isn't fun but you can survive it. A few weeks after all the sores heal you will start to see some improvement. Metastatic Squamous Cell Carcinoma here and so far a 12 year survivor. Always have hope and keep a positive attitude. Research and advocate for your health care. How soon do you start?