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Radiation -my experience #199797
02-14-2020 12:18 PM
02-14-2020 12:18 PM
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muddyb00ts Offline OP
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muddyb00ts  Offline OP
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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

Re: Radiation -my experience [Re: muddyb00ts] #199822
02-17-2020 02:26 PM
02-17-2020 02:26 PM
Joined: Jun 2007
Posts: 10,440
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Thanks for taking the time to share your experiences with everyone!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Radiation -my experience [Re: muddyb00ts] #199832
02-21-2020 12:31 PM
02-21-2020 12:31 PM
Joined: Dec 2019
Posts: 8
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muddyb00ts Offline OP
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muddyb00ts  Offline OP
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Joined: Dec 2019
Posts: 8
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


Last edited by muddyb00ts; 02-21-2020 12:34 PM.
Re: Radiation -my experience [Re: muddyb00ts] #199841
02-23-2020 03:17 AM
02-23-2020 03:17 AM
Joined: Jun 2007
Posts: 10,440
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
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Joined: Jun 2007
Posts: 10,440
PA
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.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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