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14 rads down and having trouble swallowing. Using baking soda/salt mixture several times a day. Dr prescribed triple mix (benedryl, maalox and xylocaine is not working. Does anyone have any other suggestions? PLEASE! Willing to try anything.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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Sandy,
Ask RO to prescribe pain meds. Hyrdocodone, oxycodone, and morphine are the typical pain killers. If you are hurting take them, there is good reason to suffer and pain delays recoverying.

Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
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So sorry to hear you are beginning to feel the effects of rads, Sandy! Unfortunately there isnt very much that can be done. Try a humidifier in your bedroom at night to increase moisture in the air. Drink extra water and keep swallowing. Even when it hurts you must still force yourself to fight this and continue to swallow even sips of water several times per day. If you dont keep using those swallowing muscles, it will be so much more difficult down the road trying to reteach them how to work correctly to avoid aspiration. I know its not easy, but please keep pushing yourself.

The triple mix is to help numb your sore throat/mouth long enough to eat and drink. Its called Magic Mouthwash. This only will work for a few minutes, maybe 15 or 20 minutes max. One trick I learned was to gargle with it for as long as I possibly could then it will last longer before wearing off.

Hang in there!!! We are in your corner smile


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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Try drinking flattened club soda... it is the same as the baking soda mixture but you can drink it and don't have to spit it out. This way it helps heal your throat.

I'm going to play my manuka card here. I don't often trot it out these days but - I will suggest it as it can't hurt, (okay I meant that metaphorically) but it may help. I used it througout my treatment and while things did get bad, it actually staved off the worst until the last two days of treatment.

If you want to try it - you can buy it at health food stores, and or whole foods. If you live in a one horse town that doesn't have a store like that - you can order it on the internet.

You want organic, you want a fairly high UMF - +16 is good.
Take a teaspoon, put it in your mouth let it melt.
Swish for 1-2 minutes (okay so yes IT STINGS - BUT it heals and after you swallow it, it numbs you) I used to hop around while I was swishing. And it helped me. Not everyone agrees, but it might be worth a try. Look it up.. see what it's all about. It's fairly cheap - $20 - and ask your RO before using it. Mine said more power to you, but some - because they have no idea what it is may say no.

You can do this frequently. I would eat, rinse then use the honey. Or after treatment I would rinse then use the honey.

It doesn't cause cavities because it is antibacterial, and it even helped with my thrush. HUGS.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I think water with baking soda may result in a higher pH which tends to offer higher buffering over club soda and feeling a bit "smoother and softer".


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
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This is possibly true. The hospital actually recommended the club soda. I used a mixture of both as the club soda gets into the throat area, where the mixture doesn't as you shouldn't swallow it.

hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Radiation sucks! Any suggestions on eating..my taste buds are gone everything tastes rotten, using my feeding tube almost for everything. Even water tastes salty. I know I have to intake something orally but any suggestions on something that won't make me gag. Still have 20 rads to go. Chemo is now a possibility. Taking life 1 day at a time.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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Hi Sandy - Everything tasting bad is in my opinion way worse than having zero taste. Neutral I can handle, taste bad and I didn't want to eat anything. I could easily go the whole day with no food as there was no appetite either. But, we know we gotta eat. I didn't have a feeding tube, a big difference for me, I had to intake everything by mouth.

One thing I could always get down was Ensure Plus, even the Walmart version of it was okay, it didn't taste bad. It was smooth, it was creamy and I knew it had the nutrition I needed.

Though it was suggested to me by others I didn't use the triple mix, I just used oral lidocaine. My RO wasn't a fan of the triple mix; he liked oral lidocaine and consumable aloe vera juice ($7 a gallon at Walmart). And if those weren't enough he would give prescriptions for the stronger pain meds though I never needed them. He said on several occasions that the medical trials results of aloe vera are well documented and therefore it is a valuable tool in fighting inflammation. It tastes neutral even when the taste buds work.

My throat seldom hurt, for me it was the mouth that hurt. So, I just diluted it 2 parts lidocaine to 1 part water, a little thinner, easier to swish, gargle and spit. I didn't swallow it even though the doc said I could. When symptoms were the worst I used lidocaine every hour, or so it seems, and always before a meal (and a couple of times also during the meal). It seems eating just washed it away and eating without it was too painful. Since I always spit it out I felt I was never overdosed. It didn't take much, a teaspoon size dose or less was always sufficient. My prescription was always for 300 ml sized bottles and I went through two of them during my rads.

I'm sorry your symptoms are so bad this early in treatment. It won't help you feel any better, but if memory serves my RO said you symptoms are about average. It will be uncomfortable, but you will get through it, one day or even one hour at a time if need be. Soon enough this will be just a faint memory. I'm seven weeks post treatment right now and I had to think some to be able to write this response to your thread.

take care, keep fighting, just around the next turn you will start to see a small light at the end of the tunnel.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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The under statement of the year, "Radiation sucks". No question about it. Calorie intake is the biggest challenge. Just focus on getting thru the next feeding. Keep drinking orally everyday. Even if it is just a few sips. Watch out for burning tongue, for me thrush followed, with all its nasty effects. I think it might be worth preemtive actions, if there are any. Aasks the doc to look every time you see one. It sucks but its just pain. You will get thru it. Good luck.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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More then halfway done...yeah! Unfortunately vomiting started early this morning. Everytime I put water/ensure inmy feeding tube up it came. I so hate to vomit. Ended my day at urgent care for 3 bags of fluids. Fingers crossed for a better tomorrow. Argh...losing my patience with cancer.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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