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Joined: Nov 2014
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Hi everyone. I am 3weeks out from treatment. I stopped pump and formula and began blended formula using one called liquid hope and another called real foods. I supplement with fruit smoothies. This all goes through peg. I have more energy and I am not taking acid or nausea meds as much. My stools are normal and bowels working. I had swallow test yesterday and have no saliva in my mouth. It felt very strange to chew again. Is there anyway I can help increase saliva? I do speech exercises everyday and I am hopeful. I am glad to be untethered from the pump and glad to be slowing getting better. I am concerned on the amount of water I get. I do brush my teeth regularly and try to aide dryness with biotine and coconut oil.
My wife feeds me with syringe and I eat at same time she does. So breakfast, lunch and dinner then bedtime snack. It's been difficult to keep calories up but I am lucky I have only lost 20 lbs. any suggestions on how to get off the peg and getting saliva going again would be appreciated. Ya'll have been a huge help to me and my wife.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jun 2007
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There is a medication called pilocarpine which for some can increase saliva. It takes a little while to build up in your system to properly work. Not everyone has success with this medicine. Personally, I hated it. It caused me to sweat more than any change in my saliva.

Since you are only 3 weeks post rads, you still have a long road to go with your recovery. At this point you have just came out of the tunnel. Most patients have many ups and downs and several set backs during their recovery phase. For at the very least the first year post rads your intake needs to be at least 2500 calories and 48-64 oz of water every single day. Even taking in 3500 or more calories daily isnt too much during recovery. This is what will help you to recover and hopefully avoid too many set backs. Many patients get discouraged and frustrated with their lack of progress during recovery. Two years is how long it takes the body to rebuild itself after going thru OC treatments. Most will notice improvements here and there during that time in their sense of taste and saliva.

Be cautious with when blending your own meals. Calorie counts and a complete daily nutritional balance of all essential vitamins and nutrients are hard to manage when making your own 'formula'. Adding some high protein whey powder will help with healing. Also, home made concoctions can clog and breakdown the tube so always rinse thoroughly after a feeding. The rinsing will also help you to increase your water intake.

Hang in there, the worst is behind you. Best wishes with your continued recovery.




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: Oct 2012
Posts: 1,275
Likes: 7
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Hi Larry, If you have BOT, it's possible that the radiation has fried the salivary glands. John had 70 gray of radiation and even now, two and a half years out, he still has zero saliva -- the dental oncologist measures that every time he has a call back. It makes pushing the food to the back of the throat very hard and swallowing difficult. Unfortunately, for him this is part of the new normal.

Christine has given you some very good advice. You have to make sure you get enough of the essential nutrients. Can you get a consultation with a nutritionist of dietitian through your hospital?


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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For those who have not received radiation treatment, please take heed. Radiation can destroy saliva production by hitting the parotid and salivary glands.

Fortunately, I got educated early enough to learn this so I was extra diligent reviewing and discussing the planned mapping of my radiation treatment.

They clearly understood I was very keen on them thinking extra hard to ensure the damage to other organs was minimized while not degrading the efficacy of the treatment.

Luck or not, being about 20 months post, I have 100% saliva production, never any dry mouth, and the side effects I experience seem obviously due to the radiation directly where the active cancer was found.

The neck muscles right on the nymph node track tighten up and the area at the back of my chin is basically where the BOT cancer was and that area will spasm if I do a big yawn. kind of funny I train myself to yawn differently to trigger the spasm.

So was it pure luck my parotids got minimal direct or scatter, I don't know. I am planning a followup with the RO, maybe I can get a dosimetrist too to review my plan and compare against my current state. The primary reason for the visit would be to discuss long term side effects such as ORN and other dental related issues.



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: Nov 2014
Posts: 73
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Hello Christine thank you for taking time to answer my post. To answer your question about do I have a nutritionalist but she wants me on the Peptamen formula and only 1600 cal a day. My wife was giving me six cans a day but this formula made me vomit and have black smelly stools.

When I explained to my Nutritionalist how the formula made me nauseated and I vomited she wanted me to have a TPN put in I did not. I know she was frustrated because I had tried for different formulas and they all made me vomit and have black burning stools.

I'm sure it is a good formula for some people but I have also ulcerative colitis. The pump made it very hard for me to get about and it just didn't work well for me. I was having burning acid and nausea all the time, thus takng more meds than I do now.

The blended formula called liquid hope has worked well for me. Both the real foods and the liquid hope olare FDA approved and have insurance department who are willing to work with you. I have shared with both of my G.I. doctor, radiation doctor, my internist, home healthcare nurses and my oncologist that I have changed my all formula diet to a blended diet.

I do appreciate being told to be cautious. I assure you I am. It is always impt to check all expiration dates even on formula.

Where I am located there are no dental oncologist. Do you think I should travel to see one?

I do see a swallowing and speech therapist two times a week. They are trying to help me eat. Yesterday I ate one quarter of a teaspoon of pudding four times and 4 sips of apple juice which was thickened with thickener by Nestl�'s. I do the exercises daily.

I was ordered one cup of water extra a day while on formula but I try to take in 4 to 5 cups a day. Thank you for your advice I will now try to up my water intake 64 ounces.

Ps I use the app CalorieKing which allows me to create recipes and keep track of nutritional tallies.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Posts: 10,507
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If you dont have a dental oncologist available, try finding a periodontist. Many of those types of dental professionals are experienced with treating OC patients who have more complex issues especially after rads.

Its very common for tube feeding patients to have some nausea and digestion issues. I went thru several different kinds before I was able to handle tube feeding. There are many different formulas out there available thru prescription. There are ones available for those who have sensitive stomachs and other medical issues.



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: Nov 2014
Posts: 73
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2014
Posts: 73
Thank you Christine. I saw my Oncologist yesterday and she gave me a prescription for the Liquid Hope I have been taking. She was very impressed by my progress.

It has worked for me, no more nausea, vomiting or acid. I also asked her about dentist and came to find out we both saw same one, but unfortunately he retired recently. Looks like I have to start from square one.

Now if I can get my saliva back, eating by mouth, a clean PET and Peg out I will be a happy man.


T4,N2,MO SCC of the BOT hpv+
Weekly Taxol/Carboplatin w/ 44 rad 73 GY Nov 2014 - Jan 2015
PEG tube feedings (Liquid Hope). Removed PEG 7/7/2015
Clear 4.9.2015 PET/CT H&N.
11mm low SUV nodule RUL on lung PET/CT
2nd PET 8.25.15 10+ numerous nodules bi later lungs
9.9.15 Lung biopsy SCC Org BOT
Avastin and Torisel clinical trial 11/15-3/16 MDA
Home 5/23/16 Pet scan 50% growth & +SUV
Opdivo 6/2016
Synthroid 100 mcr
Scan tumors shrinking
Teeth decay 9/2016
Joined: May 2014
Posts: 17
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Joined: May 2014
Posts: 17
Thanks for the realistic answers to these questions. I am over 1 yr out of rad/chemo and still not eating. The mucositis causes everything to burn my mouth even water. Peg out in Dec 2014. Glad to know it just takes time and 1 day I will eat again.


Surgical biopsy Jan.2014 diagnosed verrucas carcinoma, previously biopsied by oral surgeon in office diagnosed verrucas leukaplakia. Radiation 33 sessions 4 chemo. Jpeg March 2014, removed Dec 2014 when started drinking boost. Surgical biopsy Oct 2014 - Jan. 2015. no cancer

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