I searched high and low for information prior to starting my radiation treatment and found almost nothing. My doctors and the people my doctors put into contact with me answered most of my questions with "it's different for everyone". I wanted to put this out there as a loose guideline for others starting radiation and looking for others' experiences. Remember that individual experiences probably do vary a lot, but here's one experience to get you started.

First, know I'm a 44 year old female non-tobacco user who had a SCC removed from the side of my tongue and neck dissection surgery about 2 months prior to starting radiation.

Treatments 1 through 6 - no effect. Keep in mind that I'm working as a Veterinary Technician at the beginning.
On treatment day #7 Started getting a salty taste in my mouth. My doctors say this is unusual. (It sounds like it's more common to get a metallic taste.) The tip of my tongue started getting a little sensitive, but it was barely noticeable and didn't effect me talking or eating. Food taste was normal.
Treatment day #8 About the same.
Over the weekend The salty taste in my mouth became nauseating on Saturday and the tongue sensitivity began making eating a hair uncomfortable if the food was hard or pokey. Food taste was normal as the salty taste would go away while eating and then come right back (even between swallows!) I was still active, went kayaking, etc.
Treatment day #9 Eating became very hard. I had steak and mushrooms, but swallowed much of the steak whole as chewing and manipulating food with my tongue was painful. Unable to brush my teeth that night due to pain. The salty taste was still there and my sense of taste was starting to get weaker.
Treatment day #10 We made rising crust pizza for dinner as it was soft and I felt I could eat it, but I could only get one small slice down. Had Ensure for dinner instead.
Treatment day #11 Doctor said to try to get real food down as much as possible, so I got a macaroni salad w/ egg in it from the grocery store at lunch. The red onions burned my mouth. I ate almost all of it, but it was a chore and was pretty tasteless. Started the salt + baking soda mouth rinse my doctor suggested in the beginning. When not eating my mouth didn't hurt much at all.
Treatment day #12 I got no sleep due to mouth pain. Got up and looked in the mirror at my tongue and the tip was covered in white stuff. After treatment I talked to my doctor and she confirmed it was thrush. Started fluconazole tablets and a dexamethasone mouth rinse for mucositis / the mouth soreness. Discussed cutting my hours at work due to pain and decreasing energy.
Treatment day #13 Woke up with almost no mouth pain and the white stuff was gone!
Over the weekend The salty taste finally let up, but the right side of my tongue where it rubs my teeth hurt a lot especially when eating or talking. I had some hydrocodone left from after my surgery and took that in order to get soup down that night after drinking nothing but Ensure all day. Ate a poached egg and some sauteed mushrooms. The egg was easy to eat and after accepting that I'd be getting most of my calories from Ensure I was feeling better (more energy with more calories getting in) and less stressed.
Treatment day #14 The salty taste is coming back, but it's mild. Went for a walk, able to get down a can of cream of potato soup with blended corned beef hash in it (high calories and I can't taste it anyway!) Did housework -wishing I hadn't cut my hours at work as I'm feeling good! I do have to take a lot of breaks, however, and the walk was quite slow. Still, 10,000 steps in!
Treatment day #15 Worked a half day in a daze because I didn't make sure I got my calories in. After work I downed enough Ensure to make my calorie input and output match and then felt better and went on a hike. Was VERY tired after. I definitely overdid it, but as of today I'm HALFWAY DONE!!!
Treatment day #16 Ate soup for lunch and dinner. Getting better at judging what I can do, blending chunky soups, getting my calories in. The salty taste has turned into a gross milky taste that makes me not want cream soups or Ensure or anything else milky.
Treatment day #17 The skin on both sides of my neck down to my collarbones is itchy and very slightly red. Milky taste getting worse and making me not want to eat or drink Ensure. Started putting Cortisone 1% lotion on the red areas to try to calm them down. Helps a little with the itching I think.
Treatment day #18 I had a cold that hadn't quite cleared up before starting treatment and my cough had persisted throughout treatment. I'm not sure if treatment causes coughing or if this is from the cold and just hanging on, but between the cough and the milky taste I ended up vomiting a little right before treatment today. It's also cold out and I'm just kinda letting myself have a down day.

The future:

Over the weekend
Treatment day #19
Treatment day #20
Treatment day #21
Treatment day #22
Treatment day #23
Over the weekend
Treatment day #24
Treatment day #25
Treatment day #26
Treatment day #27
Treatment day #28
Over the weekend
Treatment day #29
Treatment day #30

Overall, I saw a pattern of feeling best Sunday, Monday, and Tuesday and worst Thursday, Friday, and Saturday. My doctor told me to expect the same when treatment ends -I'll likely start feeling better 2 days after and continue to improve (slowly) from there.

You can try PM'ing me if you want to talk, I'd be happy to help.

-Erica

Thanks for taking the time to share your experiences with everyone!!!

I didn't realize I couldn't go back and edit my original post.


Over the weekend I forced calories in and was able to do some gardening in spurts on Saturday, and go for an easy 1 mile hike on Sunday. Gross milky taste makes getting the Ensure down harder. Decreasing energy, lack of the ability to taste food, and the social isolation created by both of those things are making me depressed. Keeping within 200 calories of my goal for weight maintenance according to my Fitbit.
Treatment day #19 Tongue sore from talking on the hike yesterday. Depression, milky taste same.
Treatment day #20 Worked 6 hours, still down, milky taste in mouth turning more sour.
Treatment day #21 Trying new foods to try to avoid milky stuff and to just feel a little more normal, but failure sucks.
Treatment day #22 Really nauseated by the idea of milky foods, regurgitated today. I hate this. Went to work and functioned because I forced calories in.
Treatment day #23 Couldn't even finish my coffee this morning. Focusing on 7 more to go.
Over the weekend
Treatment day #24
Treatment day #25
Treatment day #26
Treatment day #27
Treatment day #28
Over the weekend
Treatment day #29
Treatment day #30

All posts are able to get edited up to 3 hours after it has originally been posted. If its been longer than 3 hours and editing is still an option its possible the 3 hour window could have been changed in one of the recent forum upgrades. Its always been only Admin are able to edit things at any time, even days later is ok.

Over the weekend: Found Ensure clear which I hoped would help me since milk based things nauseate me, but it stings my mouth horribly. Back to choking down regular Ensure. That hurts too. Water burns, my dexamethasone rinse stings. I'm trembling and tearing up anytime I have to use my mouth for drinking or talking.

Treatment day #24 Went to see my doctor after treatment to ask for pain meds, she wasn't in. The other doctor agreed to see me and prescribed viscous lidocaine. It's so thick I nearly vomited right away even diluted with water. It also didn't work at all on my tongue, just my gums which are not all that painful.
Treatment day #25 Finally got pain meds -hydrocodone. 7.5mg cuts the pain by about half? Makes it bearable, but makes the nausea way worse, so didn't help me eat at all.
Treatment day #26 Really scared I'd vomit during treatment when I'm strapped in and have a huge thing in my mouth. I know they watch me, but I don't know how I wouldn't aspirate... Started Dramamine before the hydrocodone tonight and it helped a bit.
Treatment day #27 Dramamine and Omeprazole before radiation, Aleve after, and hydrocodone around 3pm when the pain from coughing, talking, etc sets in is working pretty well. Regurgitated after dinner because I tried getting 2 Ensure Very High Calorie drinks down rather than 1.
Treatment day #28 Misery. Even with the above regimen. I don't know how I can get through even 2 more treatments. This is inhumane!
Over the weekend Same. I'm really down. Boyfriend took me to the beach which was nice, but I still don't know how to deal. I think I need to start taking the pain meds regularly. I can't seem to get ahead of the pain tonight.

No longer meeting my calories according to my Fitbit. The doctor was happy I've only lost 2 pounds and said not to stress about calories anymore due to the pain. Got about 500 calories less on Wednesday and about 800 less since then. I'm sure my depression and lack of energy is due to this, but until the pain goes down it's all I can do. It takes me about 30 min to drink 8oz right now and the struggle is as emotionally painful as it is physically.

One day at a time. You can do this.

During the last couple of radiation weeks I had constant nausea and vomited often- the smell of food was almost intolerable, and the mouth sores were bad, especially on the tongue. I had the viscous lidocaine also, but could not bring my self to swallow it so swished it around for a minute or two then spit it out. I tried to keep as much as possible of it on my tongue sores, and it did provide some relief.

The drive to radiation was filled with apprehension. The stent gagged me and when I got strapped down the stent handle would push down hard onto my lips. I told my Doctor it was a medievel torture device. He raised his eyebrows.

My Doctor advised me to "keep ahead" of the pain, telling me not to wait too long to take meds.

I did not think I could finish, but I did and so can you!

I am wishing you the best.

Hi there. Thanks very much for the post. I’m starting my radiation in 2 weeks, and am very similar to you (43 yrs old. Never smoker. Removal of T2 tumor on side of tongue, with neck dissection). I’m crossing my fingers that the side effects aren’t as bad as they say. I’m very sorry you are having such a tough time emotionally and physically. You are handling it amazingly well given what you have been through. Met the radiologist today, who said that the side effects tend to worsen in the weeks after radiation stops because the radiation is still “working.” Was bummed to hear that. But it will eventually be over. I’m trying to remind myself that the situation is what it is, so I have to accept it with a soldier’s mentality.

I will say that I appreciate your wanting to take hikes/stay active, but keep in mind your body is using lots of energy to repair itself after radiation. Exercise is great for stress but you might ask your doctor if the best thing to do is rest and stay out of the sun. I’m terrible at resting but my wife reminds me that my body needs all my energy to be healing. (Had surgery a month ago)

Treatment day #29 . Still on the regimen of Dramamine and an antacid to keep the nausea down, hydrocodone when I get home. Sleep is hard because my mouth dries out at night which grosses me out and correlates with a nasty taste in my mouth. I noticed yesterday that my Ensure and flavors waters are completely tasteless now. I thought I had no sense of taste before, but clearly there were some residual tastes however minor. This sucks.

Treatment day #30 Same as above, made my doctor take one last look at my mouth since my next appointment is in 2 weeks and in the last few days I went from no white mucositis spots on the top of my tongue (it was just really raw) to now having lesions appear. She confirmed it was normal and stressed the salt and soda rinses and dexamethasone rinse. Went home, slept a little, walked about a mile to the polling place to vote. The darkened skin on my neck (both sides) is starting to peel, but looks healthy.

The end! I will start a recovery log in an appropriate place...

Good for you for having persisted with your diary through RT. The fatigue some people experience can be overwhelming.looking forward to seeing how your recovery goes. Don’t forget that radiation continues to work for a while after the treatment is over, but you should start to feel better as the weeks progress.

Hi Erica: Tried PM'ing you but it didn't work. How are things going now? I hope the side effects are starting to wear off. I'm headed into 6 week of radiation treatment next week in a very similar situation as yours (43 years old, side of tongue cancer, never smoker, 6 weeks of rads but no chemo). Thanks for posting your diary; was very helpful. Hope you are feeling better.

My recovery diary was moved to the blog section. Right now I'm about three and a half weeks after my last treatment and all weird tastes are gone, I can eat most foods, but my sense of taste is either gone or very dull. I can't taste sweet or salty at all. My mouth is still sensitive, so eating causes a little pain, but I can eat tortillas, bread, pizza. The softer the food the longer it takes for my mouth to get sore. I never had any saliva issues, but I do have a cough that my doctor doesn't understand. It may be due to increased sensitivity, the thick mucous, or the tiny blisters that pop up on the insides of my cheeks and roof of my mouth. This is happening a little less and has improved because previously it actually caused some vomiting before. My energy is probably 80%. I just finished my first week back at work and they say I'm looking and acting more like myself. My skin is still dark and dry/flaky.

My mantra through the whole ordeal was "this is temporary" and I saw that you posted something similar in another thread. When you're going through this time seems to drag -it feels like it's never going to end, but keep reminding yourself it will. I had check off boxes for all my treatments, I had a countdown widget on my phone, and for the last 9 I changed my phone wallpaper to the number of treatments left. Just remember that that 2 week period after radiation ends it probably the worst. With pain meds and Ensure or Boost you'll get through it. For now I'd say keep active and do all the things you love as much as possible while you feel good and if you get depressed force yourself to do those "normal" things slowly, or participate in other ways. I really think having things going on other than being a patient helps keep spirits up and treatment in perspective. Good luck.

dsm girl at gee male

Thank you. Great advice.

Hello- I was just looking through posts as I am starting radiation in about 3 weeks. This was so helpful to see your experience. And yes know mine will be different, but nonetheless gives a sense of possibilities.

I hope you are doing well.

Peggy

I was diagnosed with stage 4 cancer in 2015..HPV related.
My experience with radiation treatments was horrendous...
I have chronic claustrophobia...and always require taking lorazapam prior to tests..this includes MRI's..cat scans. etc.,
Prior to treatments...my oncologist talked to me about being measured for the radiation mask..at first l didn't understand what he was talking about. ???
Apparently..not only would l be going through the horrors of radiation..l then find out that l will be required to wear a close fitting plastic mask..and that l would be securely locked to the board l would be lying on for the radiation treatments wearing the mask.
I don't just have claustrophobia...l also absolutely freak out when confined ...and during radiation treatments it is imperative that you must be absolutely still...confined in other words..
This is to enable them to pin point the exact spot that needs radiated.
After the radiation treatments, l vowed that l would not put myself through that brutality again...although l doubt my type of cancer would allow another regimen of radiation & chemo.
My side effects still linger after 7 years...and are life changing..insomnia..facial numbness..loss of teeth..lack of saliva..difficulty swallowing...low energy..hearing loss..well..the list is long..
However..l am still here to tell the tale..so for that..l am grateful..
Sorry to be so negative...but l want to be honest..and not sugar coat my ordeal with radiation..
Chemo on the other hand was no problem for me..side effects were low energy and nausea.

Good luck. !!

Your diary has been a welcome read for us. My BF is on Day 24 of 33 day radiation regimen, with concurrent Cisplatin once a week for six weeks (one more to go) for oropharyngeal cancer in throat, tonsil. It had been progressively getting more challenging but the last few days it seems to have gone strait off the rails as far as mouth pain. Where before he could tolerate broths, thin soups, Boost high calorie, now everything burns, and swallowing virtually anything is like knives in his throat. He has the Magic Mouthwash which helps a bit. Was there anything that you found that helped with the miserable mouth pains?
Thank you for your inspiration too- we know it’s temporary - just hard to handle on hour to hour basis when getting next to nothing down.