Side effects to expect with rads to upper, left back where back molars used to be + left neck?

SylMarie · September 2016

I've been reading a lot of posts on the discussion board, but none seem to talk about cancer in the upper mouth, on the gingiva (gums). When they removed the tumor, they removed three UPPER molars and a canine tooth on the left side, and did a partial maxillectomy. The plan is to target the radiation on the upper mouth on that side only, as well as the left side of the neck.

Has anyone had this? Will I get the same side effects (swallowing difficulties and a very sore throat, for example) as those who were treated for throat cancer, tongue cancer, or other location in the head and neck? I know I can expect mouth sores and mucositis, especially since I will do weekly chemo. Any thoughts?

Thanks.

Hondo · September 2016

Hi SyMarie

Will you get the same side effects is a tough question? We are all different in how our bodies react to treatment. I had problems but I was radiated twice in the same place and it was almost 7 or 8 years before any side effects started to show -up. Hope this helps.

Tim

CivilMatt · September 2016

good question

SylMarie,

As Hondo said “I don’t know”, but I doubt it will be something uncommon. Most likely you will follow a similar path to what most of us did and you will select those hints which work and settle in for a hopefully less bumpy ride. Believe me, there are members who do very well and I hope you are one of them. If by H&N chance you need help don’t hesitate to TELL your team and use us as a “been there done that”resource.

The H&N members from December 2011 – January 2012 helped set a good course for me and fighting those pesky side effects. The simplest and best suggestion I got was to drink lots of water and swallow often, BEST!!

Be prepare, take things as they come, have a nice recliner, select some tunes for rads, stay hydrated and consume 3k calories a day (food or drink), to name a few.

See you later.

Matt

georgiasurfer · September 2016

Side Effects

This is almost exactly what my husband has but he only lost 2 teeth. He just finished week 4 of radiation and he has hardly any taste buds, zero appetite, some nausea, extreme dry mouth and I assume some irritation as salt water burns him. He's on liquids only and has bad trisums and no feeding tube. The one thing he doesn't seem to have is a sore throat or difficulty swallowing. He's been using L glutamine since he started and that seems to have helped some with mouth sores. Also no mucous yet. I'm not sure he's getting the needed calories but can't get a feeding tube due to mouth opening and concerns trying to intubation him. So far he's only lost 3 pounds but I expect next check to be closer to 7 or more.

As as others have said, everyone is different but this is his story as of right now.

Best st wishes to you!

SylMarie · September 2016

georgiasurfer said:
Side Effects
This is almost exactly what my husband has but he only lost 2 teeth. He just finished week 4 of radiation and he has hardly any taste buds, zero appetite, some nausea, extreme dry mouth and I assume some irritation as salt water burns him. He's on liquids only and has bad trisums and no feeding tube. The one thing he doesn't seem to have is a sore throat or difficulty swallowing. He's been using L glutamine since he started and that seems to have helped some with mouth sores. Also no mucous yet. I'm not sure he's getting the needed calories but can't get a feeding tube due to mouth opening and concerns trying to intubation him. So far he's only lost 3 pounds but I expect next check to be closer to 7 or more.

As as others have said, everyone is different but this is his story as of right now.

Best st wishes to you!

Hi, GeorgiaSurfer! I bought

Hi, GeorgiaSurfer! I bought a bottle of the L-Glutamine powder. How do you mix this, and then what does your husband do? Is this the mixture that you rinse with and then spit out, or do you swallow it?

Thanks.

Syl

georgiasurfer · September 2016

L Glutamine

He mixes it with apple juice, about a cup and then kinda swishes and swallows it all. I think it's 1 teaspoon of

powder mixed in 6-8 oz of water or juice 3 times a day. Not sure if its helping but I'm sure it's not hurting.

phrannie51 · September 2016

SylMarie said:
Hi, GeorgiaSurfer! I bought
Hi, GeorgiaSurfer! I bought a bottle of the L-Glutamine powder. How do you mix this, and then what does your husband do? Is this the mixture that you rinse with and then spit out, or do you swallow it?

Thanks.

Syl

If you can't take applejuice...

when I say "can't take"....I mean that most fruit juices contain acid, and can sting like the devil. I mixed mine in water...two teasspoons to 8 oz. At the time even plain water stung, but once it was mixed with L-Glutamine, the sting was gone. It's good stuff.

p

phrannie51 · September 2016

The two side effects...

everyone seems to get are...dry mouth (that is bone dry), and loss of taste. After that it's a crapshoot. I actually felt guilty during radiation that I didn't seem to be suffering like my friends here. I ate soft food and drank ensures by mouth the whole 35 treatments. All hell broke loose in my mouth when rads were over, and I started adjuvant chemo, tho....

The best thing about this site is that you can ask a question, get 12 different suggestions....and if one doesn't work, you can try the next. One is bound to work for you. So many nifty ideas that people came up with themselves....things our Drs. have never thought of.

p

SylMarie · September 2016

georgiasurfer said:
L Glutamine
He mixes it with apple juice, about a cup and then kinda swishes and swallows it all. I think it's 1 teaspoon of

powder mixed in 6-8 oz of water or juice 3 times a day. Not sure if its helping but I'm sure it's not hurting.

GeorgiaSurfer, how is your

GeorgiaSurfer, how is your husband doing this week? Any change on the trismus? Has he changed his jaw exercises at all? I ask because I am still using the Therabite 5x per day, 30 repetitions each time, and have now graduated to the next setting. I have to keep reminding myself every day to keep doing this, and my husband helps with the reminding.

Today was my second radiation treatment and I am afraid that if I don't keep up the Therabite exercises, I will lose the jaw opening progress that I have made!

Here's to better days ahead for all of us.

SylMarie · September 2016

phrannie51 said:
The two side effects...
everyone seems to get are...dry mouth (that is bone dry), and loss of taste. After that it's a crapshoot. I actually felt guilty during radiation that I didn't seem to be suffering like my friends here. I ate soft food and drank ensures by mouth the whole 35 treatments. All hell broke loose in my mouth when rads were over, and I started adjuvant chemo, tho....

The best thing about this site is that you can ask a question, get 12 different suggestions....and if one doesn't work, you can try the next. One is bound to work for you. So many nifty ideas that people came up with themselves....things our Drs. have never thought of.

p

Hi, Phrannie! I bought the L

Hi, Phrannie! I bought the L-Glutamine powder. My first rad treatment was yesterday. Had my second today. When should I start swishing and swallowing the L-Glutamine, and how often?

I've read one teaspoon per 8 oz. and 2 tsp. per 8 oz. I guess I can try both. My rad is focused on the upper gum area, in the back of my mouth. I should have most of the same side effects as everyone else here, I think.

The mucositis scares me because I already deal with post-nasal drip, due to allergies, and I'm afraid of gagging -- especially while wearing the radiation mask. I have bought saline syringes for nasal flushing and I plan to drink a lot of water.

Thank you for all your great suggestions, as always.

georgiasurfer · September 2016

SylMarie said:
GeorgiaSurfer, how is your
GeorgiaSurfer, how is your husband doing this week? Any change on the trismus? Has he changed his jaw exercises at all? I ask because I am still using the Therabite 5x per day, 30 repetitions each time, and have now graduated to the next setting. I have to keep reminding myself every day to keep doing this, and my husband helps with the reminding.

Today was my second radiation treatment and I am afraid that if I don't keep up the Therabite exercises, I will lose the jaw opening progress that I have made!

Here's to better days ahead for all of us.

No better

Hi, he's no better with the mouth opening. How long do you hold each repetition? I'm going to suggest he try this. It can't hurt.

Good luck on starting your treatments. You will do great. Definitely keep using the Therabite! We have 4 to go and are so ready to start feeling better.

SylMarie · September 2016

georgiasurfer said:
No better
Hi, he's no better with the mouth opening. How long do you hold each repetition? I'm going to suggest he try this. It can't hurt.

Good luck on starting your treatments. You will do great. Definitely keep using the Therabite! We have 4 to go and are so ready to start feeling better.

I don't hold the repetitions

I don't hold the repetitions for too long. They're pretty quick. I actually went on YouTube and looked for "Therabite" and viewed the exercises as they were done. That really helped. It's something you really have to do every single day, 5 times per day, no matter what. I take that thing everywhere and sometimes I'll do a set while sitting in a parking lot before going into wherever I'm going. Don't give up. Keep your breathing nice and easy while you do them, to help you relax.

Thanks for the encouraging words. I'm going to treatment #3 today. I have a long way to go.

phrannie51 · September 2016

I'd start the L-glutamine....

AND the soda/salt swish now. Maybe stave off any mouth sores. If you start feeling a "grainy" place in your mouth...like tiny sand under the skin, that's the first stage of a sore.

p

Side effects to expect with rads to upper, left back where back molars used to be + left neck?

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