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#174132 11-18-2013 04:29 AM
Joined: Nov 2013
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Hi Everyone ,
I am one month post radiation & chemo treatment . My mouth are still dry but I can eat almost everything except that I have pain
in my mouth .I don't know how long I will have to deal with this pain & what is more difficult to handle , the dry mouth or the pain .
Now, I have read that recovery takes so many months it is good to know .The second of December I am going to have my first post
Tx CT scan .
I want to thank you for all these good & helpful sharing of your experiences . For me most important is to have good & uplifting
attitude & look at the changes that already occurred & make my life easier.
I am not taking any pain meds so the most challenging is to deal
with the pain while swallowing , but I believe that will also pass.
Marta

Joined: Jan 2013
Posts: 57
"OCF Canuck"
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Good morning all
I just returned from a hunting trip to the interior (kamloops) area with my son, while there (a week) I had terrible dry mouth while sleeping had to wake up every couple hours for water. The area I was in was cold and had a propane fireplace for heat in the cabin. I thought that maybe something was changing with my post treatment symptoms but no as soon as I got home I was able to sleep all night without any dry mouth at all. Maybe try using a humidifier as this helped me during the worst times, I live on the west coast (Vancouver island) and the air here is very moist.
Good luck ken


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
Joined: Sep 2012
Posts: 64
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I use XyliMelts tablets at night which helps with the dry mouth, Some use them days, too. I get them through Amazon and you can read reviews there.


Stage 3-4 Squamous BOT diagnosed 3/19/12
Molars removed 3/29/12
(Cisplatin) inpatient: 4/11/12-4/16/12; 5/2/12-5/9/12; 5/29/12-6/4/12
Feeding tube: 8/9/12-11/21/12
Radiation 8/10/12-8/29/12
Chemo 1X/week 8/10/12-8/22/12
Last PET/CT clear: 9/17/13
Joined: Aug 2011
Posts: 269
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Thanks lefty57! I'll give it a try. I'm so uncomfortable and have not slept in a week due to dry mouth. I also will not be able to get back to work until I can resolve this issue. Hope it works and appreciate the suggestion.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Posts: 559
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Hi Marta:
Welcome to the family. Even though you hurt it's good for those of us just now in treatment to know what you are experiencing a little further down the road. It certainly doesn't sound pleasant, but I think I'd rather know what's coming than be surprised later.

Keep fighting, I'm sure it will get better, just not soon enough.

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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Administrator, Director of Patient Support Services
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Welcome to OCF! Congrats on completing your treatments!

Being one month post rads, you still have a long road of recovering to go. You can look forward to getting much better than you currently are. Soon the good days will outnumber the bad ones.

the key to this whole thing is getting enough nutrition and hydration. Every single day for at least the next year your intake should be a minimum of 2500 calories and 48 oz of water. If you are struggling with holding your weight then increase the daily minimum to 3500 calories.

This list will help you relearn to eat again. Texture is very important right now and most of these foods have a smoother texture. The milkshake is huge and has about 2000 calories. Dont be afraid to drink 2 or even 3 of these per day without fear of gaining a ton of weight. many weeks I drank 2 or 3 and never gained an ounce.

Easy to Eat Food List

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder

Blend this extra long to make it very smooth and creamy so it goes down easier.


Best wishes!


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
Joined: Apr 2013
Posts: 319
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Hi Marta, sorry to see you here, but glad you found us because there is a lot of help to be obtained here, and a lot of love conveying it! We are a family, and you are one of us, so Welcome!

Dry mouth is relieved by the non-sucrose "sugar" Xylitol. LeftyS7 suggested a hard candy called "XyliMelts", but a much easier and, IMHO, overall better (more effective and much longer lasting relief) solution is cheap and widely available chewing gum that is sweetened with Xylitol; to wit, Trident.

Did I mention, very effective relief, Long lasting (a stick lasts me 5 hrs or more) and DIRT CHEAP?

I like the 3-pak of "Tropical Twist" and would not think of heading to the gym for my regular workouts without starting a piece of that first. However, under the strenuous exertion of my workouts, the relief only lasts about 45 min, and then I have to start a new stick.

The mints and other candies sweetened with Xylitol will all work, but only until the mint is gone, usually a matter of one to three minutes.


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Apr 2013
Posts: 319
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Oh shoot, I forgot to address the calorie intake matter. Listen to ChristineB, she is one of the most knowledgable people on this board and no one is more caring!

Especially heed her words about keeping the caloric intake high, you are engaged in a battle for your life and health, and fighting anything imposes huge demands upon your system for energy, the source of which is all those calories you are being told to consume.

Don't consume them, your body will cannibalize itself, because it must have those calories to survive!

Also, WATER. Water is the universal solvent. If you want to lose weight, you need to consume lots of water to remove the bio-byproducts of the weight loss.

If you are taking chemo, you want to consume lots of water for the same reason.

Ditto for radiation.

Even in normal, everyday life before cancer, there is practically no activity you can engage in that does not result in your body needing to excrete some byproducts, and water is the sole vehicle you have for carrying the poisons away.

DRINK AT LEAST 64 OZ DAILY!

That, actually, is the recommended daily amount for every adult on the planet, and I shouldn't have to draw any pictures about the addition of cancer to the need equation.

And yes, you are probably thinking that "that guy must get up to pee every hour or so at night." Bingo! In the greater scheme of things, that doe not even register on my "woe" meter.



My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Water only relieves dry mouth for about 12-16 minutes, but still an option. Milk replicates saliva. Sugar increases salivation, but maybe not good for the teeth. Smelling lemons, citric candy, chewing gum, sucking on pits from pit fruit, drinking lemon water helps produce saliva. Even sering smelling, thonking about food helps produce saliva. The salivary glands basically shut down at night, causing dry mouth, and those sleeping with the mouth open, more so. There are some mouth straps for snoring that help keep the mouth closed, and know of some using tape to keep the mouth closed. I used biotene dry mouth gel at night, but don't know how the product is these days, Vaseline or chap sticks on lips to prevent dryness, in addition too using dry mouthwash, toothpaste.

Daily requirement for water varies for each individual, based on height, weight, altitude, illness, medications, pregnancy, humidity, activity, and I always went by half your body weight in liquid ounces just to begin with, which formula basically comes to it. They say no more than 20% should come from eating food, and the rest liquids. There are plenty of daily water calculators on-line, ipad has water apps for free. For me, it was 128 ounces, and was surprised myself. I forget my weight then, maybe 180lbs, and half that is 90 ounces, not including the need for more. I don't think I ever drank that much, but if I was ever hospitalized for another reason, I was always treated for dehydration too.


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
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs







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