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gmcraft #199092 09-18-2019 08:32 PM
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Ok. Update and a question for you.

Update.

Had my 10th of 33 radiation treatments today. Side effects are making themselves known. Most pronounced effects are, dry mouth, mucous, a little redness around the skin, a few more sores in my mouth, and swelling of my mouth - tongue and cheeks primarily (more on this later).

Other than that I have been feeling relatively well. I have been taking all nutritionist orally. I flush my peg every day with water to make sure it is flowing properly and to provide a little extra hydration. Most calories are coming from soups, smoothies, I protein, and a little bit of solid food. Weight has more or less stabilized and I am able to battle weight loss with increasing iprotein consumption.

Still getting around well. Rode my bike to radiation appointment today - doc said this was a good sign. It wasn’t a long ride and it was a beautiful day here in Toronto.

Next week is the second chemo instalment. 1st series went really well, thanks to some well timed anti-nausea medications. Had a home nurse for post chemo saline flush. A bit of a hassle, but I put up with it.

Questions:

1. I think that if I could chew solid food I could easily swallow it. My problem is that the rads have increased the swelling and soreness in my mouth. When I try to chew solids, I end up biting my tongue or cheek - kind of painful. Anyone have any suggestions to avoid biting tongue? It is pushing me to a full soft diet and I would prefer to eat solids if I could.


I can’t tell you how helpful all of the information and advice from the forum has been. Thank you all for your efforts.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
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Hi Barry!

Sounds like you are doing great! Glad to hear you are still trying to eat as best you can. The further along you go with rads the more challenging it may become. Getting yourself into a routine with pushing daily intake now will help to get thru everything easier and hopefully continue on as habit if/when eating does become a struggle.

Generally broth based soups do not have many calories but they do help your daily fluid intake numbers. Cream soups may be easier to eat than broth based soups, especially for those with mouth sores. During rads and the first few weeks/months of recovery its all about getting the most calories per swallow or sip. The more the better as will be the case for at least your next 3 or so months.

Other helpful eating tips include...

Use a food processor to help chop up things you are trying to eat
use a fork and knife to cut pieces instead of biting into something
brush and floss after every meal
rinse and spit 4+ a day with the mixture of 1 cup warm water, 1 tsp baking soda and 1 tsp salt (gently swish it around your mouth for a minute, then spit it out) (salt can burn radiation caused mouth sores and a general mouth sensitivity, if necessary cut the salt back to 1/2 or 1/4 tsp salt ... if after cutting back on the salt you still cant bear the salt induced burning, omit it completely ... it really is very beneficial to have the salt in there so try your best to keep some in your concoction)
As recently discussed in another thread use prescription Magic Mouthwash (MM) which has several variations, the one I used was maalox, benedryl and lidocaine. That will numb your mouth for 15-60 minutes after swishing it around in your mouth and spitting it out which should allow you ample time to eat.
****EAT SLOWLY!!!! Take your time, budget your time so you allow yourself at least double the amount of time it takes you to eat so you arent in a hurry. Frequently OC patients begin to feel the effects of rads will find eating is progressively more difficult and time consuming, the effort of eating wears a person out
When eating, do not talk or be involved in conversations, stay focused, pay close attention to what you are doing, cut or mash up (a food processor, blender or mixer helps to minimize chewing and makes eating easier) whatever you are attempting to eat to help reduce how much you need to chew something which should in turn reduce the tongue biting
add butter, sour cream (many dairy items help cut the acidity of foods), gravy to make food easier to swallow
seek out a nutritionist at your treatment facility
avoid buying large quantities of items as the sense of taste can come and go, eventually food loses its flavor and things may taste overly salty, burnt, like cardboard
eat smaller portions more often
keep eating as much as possible
write everything down... every single day keep an accurate count of what/when/how much you take in per meal or snack and have a seperate running total of calories and water intake, even count the flushes of water

Along with your intake documentation, write down an ongoing daily log of any and all medications taken including when/strength of medication/name of the medication/dosage.

Even patients who have the best memory can have a hard time remembering every detail of their day to see if they have taken in enough. This can be very important when referring to medications. Some patients in your situation, will feel as if they're in a fog and begin to forget things they'll lose track of time... AKA chemo brain! Always better to write it down when it happens so you know you have it to fall back on down the road. Pluys if your doc asks you specifics about your at home routines you have the ongoing daily logs.

Recently there have been discussions of Magic Mouthwash (MM) which is a concoction of lidocaine, maalox, benedryl (thats what the MM I had was made of ). If you dont already have this, ask your doc for a prescription. The MM will temporarily numb your mouth anywhere from about 15 minutes to an hour. Directions --- shake the bottle, swish a large teaspoon of MM around in your mouth for a minute then spit it out. Do NOT swallow it!!! Even if the directions say to swish and swallow, dont do it or you could have bigger problems by choking and not even realizing it.

The following list I started 10.5 years ago. WOW!!! Time sure flies!!! These foods have a smoother texture, are less spicy and most patients have found them to be a helpful tool during rads and recovery.


List of Easy to Eat Foods


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
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ChristineB #199097 09-19-2019 05:51 PM
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Christine. Thank you for your informative post, lots of great ideas that I will take advantage of. I had my weekly meeting with radiation oncologist and told him about chewing problems. His response was that they had lots of “tools” to address pain but none to address “swelling”. Similar advice to yours -slow, focussed chewing. I have a feeling that as the side effects of radiation continue to close in that I am nearing the end of my chewing days.

I like your suggestions on recording food and meds. My intake from here on in is likely to be a combination of soup, smoothies, blended foods and supplements (ensure). I’m hoping I can swallow it for as long as possible but have the tube ready to take over when needed (at your suggestion I might add).

I have a prescription for “magic mouthwash” that I picked up a few days ago. I tried it once to get a better sense of how it was going to help. Haven’t needed it yet, but I will heed your warning on not swallowing (my prescription says to swallow). I met the hospital nutritionist last week. She is on board with my plan and arranged for insurance to cover the cost of iprotein and the 6 servings a day I will need when it comes to that.

Other than that, I plan on taking advantage of the nice weather forecast for this weekend in Toronto, and get outside for some golf before the side effects turn me into a basket case.

Thanks again to everyone for all the advice, I’m sure it is helping me get through this difficult time.

Barry


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
ChristineB #199124 09-26-2019 05:07 AM
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Hey Christine. Progress report. 15 radiation treatments completed and your predictions are coming true (are you from the future?).

I find swelling is down so chewing foods is a little easier without chomping on my tongue. Swallowing on the other hand is much more painful. Seems like my mouth Is producing little to no saliva (radiation oncologist says this will be permanent on right side of mouth, hopefully temporary on left) and a very sore throat making swallowing food difficult.

To maintain weight, I have been supplementing with isource (like ensure) and they still are easy to swallow. Up to 6 a day for 2250 calories + whatever I can eat. Have so far avoided the peg tube for anything but water to keep it clear. I suspect I am a week or two from taking everything through peg but hope I can keep eating orally.

Sunburn starting around neck (treating with moisturizer) and more sores in mouth everyday.

The psychological “weight” of the challenging treatment and the unknown probabilities of success in eradicating tumour is getting me down. Anyone have tips on staying positive?

Thanks all.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Hi Barry,

If you can still swallow a bit without using the PEG, you’re doing quite well. John could not even swallow a sip of coffee in the middle of his third week of radiation. You’re probably feeling that all your time and energy is totally focused on getting through treatment at this point. It is exhausting, both emotionally and physically. If it gets you down, you might want to speak to your team or to you family doctor about getting a prescription for anxiety. If taken before bedtime, it will allow you to sleep at night.
The dry mouth will persist for a long while. John used to carry a bottle of water with him which he drank from and rinsed his mouth with so that it wasn’t so dry. He also had a spit cup in his pocket whenever we were out. He did try the Xylitol tablets but he found them too powdery and it made him cough. Having said that, you might want to see if you have the same reaction to it or not. If not, it would be helpful.
Hang in there, you’re halfway through already.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
gmcraft #199131 09-27-2019 04:38 AM
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Thanks gmcraft for the advice, much appreciated. It’s good to find a reference point for how you are doing. Still .... I love food. I love to cook, make food with friends, match up wine with food, and that’s all gone. A lot of socializing is done .... over food. It’s hard to reconcile an extended period where anything I’m able to consume tastes pretty bad. It’s all discouraging.

Anyway, just about to head out for my second large dose of Cisplatin and then my 16th (of 33) radiation treatment. I’m still riding my bike to treatment so I feel pretty good about that.

Thank you all for the support and advice.

Last edited by Barry Toronto; 09-27-2019 04:39 AM.

Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Joined: Jul 2012
Posts: 3,267
Likes: 1
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Barry Toronto,

Your taste should start coming back several weeks to even months after treatment. Once you do, it’s a little at a time, and you may appreciate the flavors of food more than ever before! I watched food channels, read magazines and salivated from the food they were eating! Saliva helps taste! Slowly I started experimenting with the food I was seeing. Starting with soft foods like farina or eggs that didn’t scratch my throat. Slowly I added more and more! I can eat just about anything now, but the only thing holding me back is having no teeth at the time being, but even still I manage to eat pizza!

Good luck with everything!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
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10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
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12/13 25 Protons 50Gy 6 Wks Carbo
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03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
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PaulB #199141 09-28-2019 05:43 AM
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That’s encouraging Paul, thanks. I can’t wait to chew and taste foods again. Will try not to take those pleasures for granted again. In addition to the tasting of food, the social isolation is also kind of depressing. Most of my social interaction with friends came from food and sports (golf and tennis). None of those three are working very well at the moment.


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Barry, we, too, saw our friends mostly for meals and parties, when John could no longer swallow, socializing with them became a bit of a problem. Then I read somewhere, maybe on this forum, that a way to deal with this was to move the focus for socializing away from food to other things. Instead of meeting for a meal, for example, we could meet and watch a movie on tv together, for example. People may still want to have popcorn while watching the movie, but John didn’t have to partake. I tried that with some success. I was very open about shifting the focus. I didn’t hint, I just said we had to try do something else if they wanted John to be a part of it. The treatment period can be lonely, it won’t do for the patient not to see his friends at all, do give this some thought.

Last edited by gmcraft; 09-28-2019 06:15 AM.

Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Hi Barry;

I introduced myself here back in the summer. I have floor-of-mouth cancer that involved my mandible (lower jaw bone) and am also in Toronto. I live downtown, but all of my treatment is at Sunnybrook. I follow all of the doctor reports on "mychart" - think you can do that (if interested) on "myuhn".

In my case, I had a great surgeon at Sunnybrook who operated Aug 29. I was in the hospital until Sept 10. I was able to eat "normally" (in quotes because of some restrictions) before the surgery. They removed my teeth, a lot of the floor of my mouth and approx 3" of my right jaw which they replaced with 3 inches of my left leg. I can walk gingerly without any supports (only do this inside) and am up to eating more liquidy stews. I very finely chop everything (think 1/8 inch) which I don't have to chew and can swallow. I, too am drinking ensure, but also yogurt, mott's fruit sensations, oatmeal, etc. I've found that some pastas are possible, and rice/noodle side dishes like the Uncle Bens or, Knorr). I increase the liquid (water/milk/butter/margarine) to make them easier.

You might want to try some of the above. To end, I start my radiation in a week or two, they might also add chemo. Not sure, so my coping mechanisms above might all fall by the wayside.

Wish you the best in your fight and a swift recovery.

Drew.

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