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My ENT was against the tube, too, at first. He's in favor of avoiding surgery if possible, plus he was afraid that if I got the tube, I'd neglect my swallowing muscles. AFTER I was hospitalized for dehydration he decided the tube was a good idea. But I DID go to a speech therapist and work on swallowing exercises while on the tube. I still do PT at home on my neck to prevent permanent stiffening and my neck muscles continue to be tender.

I don't understand the hesitancy by doctors and hospitals about the tube. Maybe unless you've experienced it, you just can't comprehend the difficulties patients in our shoes go through with eating.

Feel free to IM me with any questions. Eat and rest when you can!


Thomas
50/married/2 children
SCC - Base of tongue + 1 node - P16 pos
Diagnosed 5/2015
Positive PET scan - 6/2015
Tomotherapy (42 treatments) through 8/2015
PEG tube - 9/15 - 1/16
NEGATIVE(!) PET - 11/2015
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If you are not taking in enough calories and hydration by mouth then you may have no choice about getting a feeding tube. This downward spiral quickly becomes a cycle. You dont feel well enough to eat or drink so you dont which only makes you feel even worse. A patient who refuses a feeding tube and isnt able to maintain the daily minimums will have a more difficult time with everything. Every single day you need a bare minimum of 2500 calories and 48-64 oz of water. If you can push to take in more that will help you make this easier. Those patients who think its ok to skimp on their intake will eventually get admitted to the hospital for malnutrition and dehydration. PLEASE, be honest with yourself and accept the help of a feeding tube. Its a temporary tube, you may even only need a nasal tube for a few weeks.

As far as helping with your intake, ask your doc for an open prescription to get extra hydration in the chemo lab a few times per week. This will help you feel a little better right away after a couple bags of fluids.

The weight loss goals for OC patients is not to lose any weight during treatment and recovery. This is nearly impossible considering how much the cancer cells burn up energy requiring higher caloric intake. Your body is also trying to rebuild itself at the same time which takes even more energy. This cycle is one Ive fallen into myself. Im speaking to you with experience and explaining it in detail so you wont suffer like I did. I felt so horrible at one point I actually felt like I was dying due to malnutrition and dehydration. My son practically carried me and pushed me into the doctors office in a wheel chair. My doc took one look at me and saw how bad my condition was and I was admitted to the hospital on the spot. You do NOT want to go thru that!!!

As treatments continue the get progressively more difficult. Your days will be spent more and more trying to rest. If taking pain meds you probably arent safe to be behind the wheel of a vehicle. Most OC patients have someone drive them to their treatments. If you dont have help like that, call the American Cancer Society and ask for a volunteer driver to help take you back and forth. Your doc fills out a form and you can get help as quickly as next week if you follow along and do the paperwork right away.

Another tip is to not think too far ahead. Take it day by day. Nobody can predict how the future will be. Try to avoid worrying about things you have no control over and focus on what is within your grasp... your intake. By constantly thinking ahead, you are only creating more unneeded stress making everything harder than it has to be.

Ok, thats enough of my rambling on about intake. Its up to you on this one. In this situation you cant fool yourself into thinking skimping will help you get thru this. The balls in your court to stand up and fight with having the fuel and energy to get thru this rough part of your life.

Wishing you all the very best with everything!!!



PS....
Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.

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
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you.




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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Christine has given you great advice. I'm adding a few things from our experience.

Before starting treatment, my husband sought out a second opinion at a CCC. The team brought up the PEG issue. They emphasized that some patients are physically unable to safely swallow at some point during treatment. They emphasized that it is not always a matter of will. I don't understand threatening a patient about this.

My husband had PEG placed before tx. He started using it after week three. He lost zero pounds because of it and I believe that helped him recover. He is able to eat all foods with liquid.

Hope you are able to get this resolved,
Lottie



CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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Got a patch for Nausea behind my ear yesterday, helped with the constant throwing up the mucous which is making a little difference already. I have heard the advise loud and clear. I will watch for the continued signs of needing a tube, I say continued because they have already begun. Yesterday I got just about 1000 calories. I am up to 800 today at just noon. I have 14 treatments left including today, including today I have 12 more times I need to go to Fox Chase Cancer center for treatments.

I have not begun any pain meds as of yet. Once I begin I will have someone take me. I have a great support system and as much as I call my wife a nagging pain, I know she means well. I have lost a total of just under 10 pounds which I know I should not lose any, but I am overweight to begin with.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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Coming up on the last week of Radiation 5 more treatments to go. As I understand these are reduced treatments. They say the the radiation will only be focused on the tumor now, I wont receive the one that is head on. Not sure I completely understand this, I only know as of my second treatment on last Friday I now have a shorter exposure to the radiation treatment. I have lost weight, as expected. probably about 13 lbs in total. I just need this thick saliva to stop, the Mucous is driving me crazy. I can deal with almost everything else so far but this.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
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Leonard, when you go for treatments ask the nurse if they can suction out the thick gunk. This will be a huge help in keeping it at bay for a short time. Your doc can also write a prescription for a portable suction machine for you to use at home. A water pik on its lowest setting helps remove the mucous as does gargling with seltzer water. I couldnt tolerate the bubbles so I didnt use the seltzer but many here have. Try rinsing your mouth a few times a day with 1 cup warm water, 1 tsp baking soda and 1 tsp salt. If it burns too much cut back on the salt or eliminate it if you have to, but do try to keep some salt in the mixture. Swish this around in your mouth for at least 30 seconds, 4 times a day.

I know its really hard to take in enough but it really is the most important thing you can do. By taking in at least 2500 calories and 48-64 oz of water every single day it will help you to recover. If you are able to push and take in more like 3000 calories or even more, that will only help to make this whole thing easier on you. Try the choc-peanut butter shake I mentioned above. It has almost all your daily caloric intake right there in one big shake.

Hang in there, almost finished 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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Posts: 55
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Thank You Christine, first I am not getting enough calories, I am getting about half of what I should get. I am doing the baking soda and salt rinse several times each day , maybe as many as 15. It does not bother me, no burning or pain with it. I never heard of the suction machine, looking on line to see what this actually is. I am curious how long after the treatments end the thick saliva will fade away.

I am getting more water down now since I switched to drinking warm water.

From your summary it looks like you have endured some difficult times, I can't imagine what it must have been like.


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jun 2007
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I forgot to mention if you are struggling with your water intake ask your doc for a prescription to get extra hydration a few times per week. This will help you to feel instantly better by getting extra fluids.

To me it sounds like you are doing very well. No pain meds is practically unheard of for OC patients.

Anywhere from 3 - 6 weeks post rads the thick gunky mucous will suddenly stop. I actually thought I was magically better but oh no... the gunk turned into the dry mouth phase. The dry mouth will be bothersome and last for a very long time. Some patients have improvements up to about the 2 year post rads point and others will become lifelong water bottle carriers, toting a bottle with them everywhere they go.

Hang in there, soon better days are coming 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
Joined: Jan 2016
Posts: 55
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Thank You again Christine, the Dry mouth will be unpleasant, I experienced it occasionally with some meds I had taken in the past. I don't know that anything can prepare you for this as you call it gunky mucous. I can't wait till it is gone, that day can not come soon enough. That will be a day for celebration.

For discomfort I started with liquid Advil the children formula. A little magic mouthwash followed by the liquid childrens Advil and a little children Mucinex is what I started using recently. The pain is not that significant compared to the gunk. I don't know if I attribute the reduced discomfort to Acupuncture which I had been getting two to three times a week since the beginning of the treatments. Interestingly I started on the Advil when I did not have access to the acupuncture, the person left for Chinese New Year and the backup person is also not available since last Wednesday.

I was having a problem with water until I shifted to warm water. Seems to go down much easier. My wife is also a dialysis nurse or I guess I should say now she manages the acute dialysis program for about 30 hospitals. The nutritionist gave her some samples of an item called Liqua Cel. I have the peach Mango flavor. The package includes about 1 ounce of liquid you mix it with a small amount of water and it provides 90 calories and 16 grams of protein.



http://www.amazon.com/LIQUACEL-CONC...5523771&sr=8-4&keywords=liquacel


Leonard
BOT T2N0 Diagnose Confirmed December 7th
Treatment Start Radiation January 11th Last treatment applied February 19th 2016
Joined: Jun 2007
Posts: 10,507
Likes: 2
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Thanks for the tip about the liquid protein!!! Im going to order some. Ive searched for an alternative to the whey protein powder. When ordering thru Amazon, please go thru the our link on the upper right of any forum page. This helps OCF by giving a small kickback (to a small non-profit like OCF, its a big help).


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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