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#198042 04-03-2019 06:36 AM
Joined: Apr 2019
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Hello,

New member here, looking for some guidance for my 69 year old father diagnosed with stage 4 palate cancer caused by HPV. The tumor is 5 centimeters in diameter and has not spread anywhere else. They say he has a 75% (or more) chance of survival which is great news. He has a PEG in his stomach for later when eating will inevitably become difficult. The <current> problem is that he always has the feeling that he has to burp, like he's bloated... He has pain in his stomach at night which keeps him up, he says it doesn't burn (not heartburn) but it's very uncomfortable... Anyone else experience that with a PEG? Did anything help?

My second question is about the radiation therapy. Has anyone gone through radiation therapy specifically for palate cancer? Is it as awful as they say? He finished week 1 of 7 today and his throat does not hurt at all.... Is this false hope?

Thanks for helping smile

-Pat


Pat
Son of Throat/Pallet Cancer Patient
7 weeks of radiation therapy (started March 26th 2019)
4 chemo treatments
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF, Pat! Im sorry I missed your post from the 3rd!!!! You have found a great place to get info and support to help both you and your father get thru the treatments and recovery phases. Its not easy for most but there are a very few lucky patients who sail right thru with barely noticing any of the harsh side effects most of us endure. Those lucky patients are usually the ones who excel at following their doctors and nurses orders and do the best with taking in enough calories and water every single day. Just remember everyones different. You will hear this many times during your fathers treatments and recovery. What helps one patient may not work for another similar patient. There are so many variables when talking about if treatments are really "that bad". Unfortunately many do struggle going thru rads but your father may not as he has you in his corner helping get him thru his treatments and encouraging him to keep going and watching his intake. If you both focus on what is controllable, that helps get thru it too. We will be here to help you both as much as we can.

After the first week, its very early in the treatment phase to see any changes. Only a few will notice anything different from the beginning of their first week. Most patients start seeing the side effects after the 3rd week. Unfortunately it gets progressively more difficult as treatments progress. When the treatments have ended, the radiation continues working. Most patients will report their first 3 weeks post rads are the hardest of the entire process. The better your father does with his daily intake the easier this will be for him. Every single day he needs to take in at the very least 2500 calories and 48-64 oz of water... it sounds like ALOT to take in but its not, its the bare minimum. If you can encourage your father to push himself to take more in, for example 3000or even 3500 calories every single day while he isnt feeling the side effects yet it will help him to hopefully get thru this easier.

As far as his stomach pains go, your father should get this checked out by his gastro doc. There could be a problem with his feeding tube that needs to be fixed. Years ago I had a problem of being in pain and it turns out my feeding tube had moved and was not in my stomach at all causing intense pain. Anyone who has a feeding tube should not lift anything heavier than about 20 pounds. If your father is taking in his formula too quickly it can cause an upset stomach or bloating which can be quite uncomfortable. Feeding tube users should sleep on an incline with their head raised higher than their feet. After feedings patients should stay seated upright for at least 30 minutes to allow the formula time to settle in their stomach. Sometimes patients using feeding tubes have a formula that doesnt agree with them. Theres hundreds of different formulas with all kinds of specialty ones for patients who have other ailments like being diabetic, higher calories, some have fiber but most do not. There should be a nutritionist or dietitian at the facility your father is being treated at that can help him with getting to the bottom of whats causing his feeding tube issues. Unfortunately, its pretty common to hear members havent been given adequate info about how to use their feeding tube. He can ask the nutritionist for help with possible problems and troubleshooting issues and some patients are able to get a visiting nurse to come to their home to check on them and make sure they're adjusting to using the feeding tube. The most common problems like nausea can usually be fixed by slowing down the delivery rate and watering down the thick formula. If your father doesnt already have a feeding pump so he can do his feedings while watching tv or even sleeping. Just remind him to always use at least 2 extra pillows to prop his head up higher while doing feedings and at least a half hour afterwards. But, with his issues he probably should stay with his head elevated much longer, maybe over night to ensure he doesnt have any aspiration issues.

Feel free to ask questions about anything related to your fathers cancer. We're here to help you both. Best wishes with everything.


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 2019
Posts: 2
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Posts: 2
Hi Christine,

Thank you for your reply, it's so nice to know that there are people to speak with about this! Appreciate you taking the time to write such a detailed reply. Really helps... smile


Pat
Son of Throat/Pallet Cancer Patient
7 weeks of radiation therapy (started March 26th 2019)
4 chemo treatments
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
You're welcome Pat smile Were all in this together! At OCF, we try to help each other to make some of the hardest days/nights of anyones life a little easier to get thru.

Hopefully your father has tried a few of my feeding tube suggestions and he will feel a little better than he had been when he uses the tube. Having to depend on a feeding tube can be difficult for some to mentally handle. I sure didnt want to have one when my doc told about feeding tubes, I was shocked and horrified thinking about a plastic tube sticking out of my abdomen. In time, most patients adjust to a routine and do better managing their feedings and nausea.

Glad to know my overly long post was helpful. I was worried I gave you too much info and was a little too open and honest which can scare newer OC patients and/or their caregivers. Thanks for letting me know!!!


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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