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throat cancer

sylvan48's picture
sylvan48
Posts: 6
Joined: Dec 2012

hi there friends, my name is sylvan and i will be communicating my record of my cancer with photos from the first day i saw it august 13th till this week december 2, 2012. I am on going into my fourth week of radiation and chemo. I will be showing pics from the different changes my tumor has gone thru. I am being treated at Northwestern Hospital in chicago illinois. i am just starting to get mouth soars and swallowing is becoming more difficult and painful i don't like it at all. i can only eat soft stuff like soup. no more sandwiches, or candy, or chocolate. or nuts or fretos or chetos. so if you have any advice on how i can deal with this please pass it on. i really like this forum and glad to meet you all. good luck.

Fire34
Posts: 352
Joined: Feb 2010

Sylvan
Would have found this board while I was going thru treatment. Are they giving you any magic mouthwash for the pain, it helped me a little. As far as the swallowing goes you seem to be way ahead of me. Week 2 is when my throat gave out. Due to the weight loss I had no choice but the PEG. Diflucan helped me with the mouth soars. What are they giving you? Thinking back, I believe it would have been applesauce and that sort of food. My treatment was at U of Chicago. Wishes & Prayers
Dave

sylvan48's picture
sylvan48
Posts: 6
Joined: Dec 2012

hi dave, wishing you the best. yeah they gave me the magic mouth wash yuk! freezes every thing my doctors say that i can dilute it a little. so yesterday i did. and it worked great. cause it is very thick and she said i could swollow it too. but i still can't eat pizza or crackers unless they are soaked in soup. i did have a chocolate shake, mmmmmmmm. also i have been buying frozen dinners and putting them in my smoothy machine it works out great. i think i am loosing weight. at least i will get a weigh in once a week. this is not the weight loss program i would have liked but if this is what it takes i have to go for it. what is "PEG. Diflucan" should i be asking about that? i also don't like that mask they put on you in radiation. i asked them to play some hip music to distract me and it is working now i don't think about the mask and before i know it the treatment is over. whew! take care dave, and every one else too.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Sorry to hear you've got mouth sores. What chemo are you doing?

I had mouth sores, too - I wasn't very successful at fighting that pain, but many on here are greatly helped by Magic Mouthwash. I'm thinking the stuff I got (Miles Mixture) must not have been nearly as good as Magic Mouthwash.

I did learn to time my pain meds for eating. I took hydrocodone about an hour to hour and a half before time to eat, if I could. Then I'd do the viscous lidocaine just before eating. This helped greatly.

I ended up doing a lot of smoothies (w/ yogurt and banana, so sometimes they burned), then eventually getting in no food via mouth, and relying on my feeding tube (PEG). Do you have a tube? Do well - and keep us updated.

sylvan48's picture
sylvan48
Posts: 6
Joined: Dec 2012

hi pam how are you feeling today? no i don't have a feeding tube i hope i don't have to get one. i just don't like the pain i am having from my mouth being so tender inside. i did get the magic mouth but alone it freezes everything so i dilute it. yet i still end up eating smoothy everything. i only have my front teeth they pulled all my back teeth. and the front ones are sensitive. i am in my fourth week of radiation and Ebitox they said they are not giving me chemo. so i will go along with it. this is my first cancer experience i hate it. take care and thanks for sharing i am gonna need all the support i can get. best wishes pam

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

It's been over two and a half years since chemo-radiation and almost two years since my last surgery (modified radical neck dissection). I'm NED, and can eat almost everything. Hoping you'll be able to say the same soon (OK - "soon" is a relative term). Do well.

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

Hi Sylvan,

Glad you stopped in and I hope we can help.

I was a big user of Magic Mouth Wash, it really helped me when my mouth and throat were sore. The taste did not bother me because I could not taste. Now days it tastes funky. I also had some liquid Lidocaine for mouth sores which worked pretty well

I did not like the mask so I always took 1 Lorazapam before treatment. Then I breezed through.

Most of my nourishment can down my PEG, but I did manage to drink one meal a day, usually, Boost, Ensure or some other brand.

You sound like you are doing fine so keep doing it. You should be more than half-way through so good luck with the rest.

Best,

Matt

Sparky boy
Posts: 3
Joined: Dec 2012

Hi sylvan just joined site today,I/m located in Australia,I underwent 38 radiation hits and Erbitux. I finished treatment 12 Mnths ago with full response,the advice i got was to have a peg tube early in treatment,you can keep the fluids up which helps the skin with radiation burns and for the mouth sores tablespoon of Bi carbonate soda in glass of water and gargle it and rinse mouth out 4/5 times a day seems to soothe the mouth and reduce the sores,Good luck mate stay tough and positive,cheers.

phrannie51's picture
phrannie51
Posts: 3726
Joined: Mar 2012

I'm sorry you had to come looking for us, but SO GLAD you found us!!

You actually sound like you're doing quite well for being 4 weeks into radiation...no way could I have done pizza, even dipping it in soup. I lived on Ensure and Boost from the end of the second week of rads (first week of May) until the middle of September. Mouth sores can be hell...I didn't have them during rads by the grace of using Mugard to prevent them...but I did have them during the last 3 months of chemo when they added a 4 day fanny pack to my Cisplatin treatment...the only thing I found that I could use to help them was L-Glutamine powder mixed in water. There was no way tho, that I could put even water in my mouth. I too had a PEG tube...it's a feeding tube that goes directly into your stomach, and you just pour your meals into your stomach.

If you're just now getting mouth sores, ask your Oncologist for some Mugard...it really worked for me...it's a preventative not a cure. Diflucan is for thrush (a yeast infection of the mouth, that can also make eating very difficult...we all seem to get it at some time during treatment)...so ask your Onc to take a look inside your mouth for any signs of thrush.

You just stick close to this board, ask any and ALL questions you have....there are so many smart people here who have been thru this...with a ton of practical advice on how to get thru it as easily as possible. Nobody made it thru pain free...but the advice I got here made it very doable...

p

luvofmylif
Posts: 344
Joined: Sep 2012

my husband also used Magic mouthwash all thru treatment which ended day before Thanksgiving, and in fact he still uses it 3 x day. He also had to have an RX for Diflucan during treatment as he needed something systemic to kill the thrush in his mouth.

Best advice , keep Drs informed of any problems you are having. They have been through this before with patients and can help you , they just need to know what is going on. Also, everyone on this site will be there to help you. They are kind , knowledgeable and compassionate, because they have been where you are. Experience is the best teacher.

Good luck on your journey. I pray for all on this site.

Joan

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Glad you both have decided to participate on the forum...

I was STGIII SCC Tonsils & Lymphnode HPV+, Dx back in January 2009. I went through a total of sixteen weeks of combined chemo, seven of which were concurrent with radiation.

No PEG, but did lose all taste and saliva about where you are Sylvan.

At that time I just switched over to all Ensure Plus and a few sliced peaches in light syrup to keep the throat muscles working.

I figured the Ensure was the most bang for the buck with the least pain. I drank several a day, each preceeded with the numbing solution, and followed up with a crusched percocet in a little water for any pain to follow...also several glasses of water each time for hydration.

Here is a link to the SuperThread, which might give you and Sparky some needed info from time to time...

SuperThread

Again, welcome...

Best,
John

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

My cancer was confined to/near the larynx, so I missed out on the mouth soars. However, you will find a lot of advice from those who have gone down your road. However one hint: I found that food/liquids at body temperature hurt less than either cold or hot liquids. Your friends and your professional caregivers will pull you thru this. Rick.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

welcome!
my experience (others may differ)...open sores in mouth are likely to be from chemo or thrush. miserable stuff, but I believe you can find treatment for sores...and they may begin to heal once you get through chemo.

a sore mouth, on the other hand, is a gift from radiation. this is all-over pain from burn, not an open sore. as far as I know, there is nothing that heals radiation burn inside the mouth/throat except time. lots of time (my case, months).
magic mouthwash helps ease the pain, but doesn't speed the healing. as long as those rads are still cooking, you may have to avoid food/drinks that irritate: acidic things, spicy things, crunchy/crusty things, carbonated things...radiation warriors all have their own lists of stuff to avoid.

best wishes!

AJW1966
Posts: 69
Joined: Nov 2012

Sad that you have to be here but also a blessing because there are great people here with lots of info and they can point you in the right direction if they don't have the answers.

I had to give up a lot of bad foods! I look it as God "resetting" my life. Now it's time to take in better, more healthier foods.

I used MuGard through the whole process of 30 rads and only developed minor soreness from mucositis. During the last week i tried the magic mouthwash and i had flashbacks of being in the dentist chair! I heard you can dilute it but my whole mouth inside felt dead. I kind of freaked out and when it wore off i stuck with MuGard. Worked for me.

So fear not, this IS temporary! Going through all the discomfort each day feels like an eternity but i used the time to catch up on old movies and tv shows, read the bible, email family and friends, hang out on this site, take a walk. Whatever to help get your mind off what you're going through.

If you're in a dry climate or it's dry in your home, get a humidifier. Bought one yesterday and it's much easier on the throat.

All the best, God bless!

Alan

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Welcome to our gang! Sorry you had to find us but glad you did, we are all here for each other. You actually sound like you are doing pretty good! I know I couldn't eat pizza or crackers or anything like that even if it was soaked in soup. I ended up with a PEG(feeding tube) because my mouth was so sore from rads and my throat was so swollen and I had sores from the erbitux. If you do end up needing a tube don't fight it, it's a lifesaver!

I used magic mouthwash too and for me it worked. That doesn't mean I liked it but it did the trick. I also got thrush so I was on diflucan too. As for what foods you should try....well because I was so sore I didn't have a lot of luck with much at all. I mostly tube fed and drank lots of water. Let me rephrase thar, I drank water many times throughout the day but I didn't get a lot down. It. Would take me literally all day to get down a bottle and a half. But I wanted to keep working on swallowing and also to hydrate as much as I could, both are very important during radiation. The little water I was consuming was not enough and I needed IV fluids 3 times a week. That happens to many of us during and directly after treatment.
I don't know what else I can add right now. It honestly does sound like you are a real trooper and are doing well. Please keep us posted and remember, drink drink drink!!!
Billie

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