Previous Thread
Next Thread
Print Thread
Joined: Apr 2016
Posts: 13
punkin Offline OP
Member
OP Offline
Member

Joined: Apr 2016
Posts: 13
Hi there it is punkin! My radiation and chemo treatments for oropharyngeal cancer ended on July 1 and I am still having difficulty eating most foods due to pain and lack of saliva. My tongue sores have healed however the site of the tumor still has a white soft scab and other areas are still tender in the palate. Before treatment ended I required a g tube for nutrition due to nausea/vomiting related to the treatment. Is it normal to still have areas like this after 2 months. The oncologist wants to see me at the end of the month to schedule a pet scan but I'm afraid the area will not be healed then. Kind of getting nervous about it all. Please let me know is you experienced this.

I'm sorry it has been so long since I posted. I was having difficulty with my password. Somehow everything worked today


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Hi Punkin,

Welcome to the forum. It is not unusual for the mouth pain to last this long. what is important is for you to continue doing your swallowing exercises because it is likely you are not eating much by mouth yet. You do want to keep the swallowing muscles in good working order. Don't worry about the pet scan. If the doctor orders it, then he probably thinks that there's enough healing at that point.


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.
Joined: Apr 2016
Posts: 13
punkin Offline OP
Member
OP Offline
Member

Joined: Apr 2016
Posts: 13
Thank you Gloria. I am eating but have difficulty with
Breads and some meat. My concern is the sore that is taking its time healing. Guess I worry that the cancer was not eradicated. I wondered if others took more than a few months for their sores to heal. Thank you


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
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
Some people take longer to heal than others. Healing is slow for most of us after having rads. I suggest asking your doc if its ok to add some high protein whey powder to your diet to help with healing.

As far as eating after rads, sounds like you are doing pretty good. Try adding gravy or cooking meats in a pressure cooker so they are extra moist when you eat them. Buttering bread or dipping it in gravy makes it easier to eat.

After rads, many patients stop pushing themselves with getting higher calories. For at least the first year after rads, patients should continue to take in at least 2500 calories and 48-64 oz of water. Rads does a number on your body! To rebuild it, extra calories are necessary. Dont worry about weight gain, its rare to gain weight during the first year after rads. Your body is working OT with recovery so extra calories are needed.

Best wishes with your continued recovery 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: Apr 2016
Posts: 13
punkin Offline OP
Member
OP Offline
Member

Joined: Apr 2016
Posts: 13
Thank you for your post Christine! I really should eat more than I do. Sometimes I eat less than 1000 calories and have lost 40 lbs. I'm trying to do better.


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
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
Suzanne, I know its not easy to eat after what you've been thru. I remember I sure had my share of struggles relearning how to eat. In order to help your body to bounce back its very important you give it the fuel to do so. Weight loss during and right after rads is not a good thing. Even taking in 3000 or 4000 calories right now wouldnt result in weight gain. Most patients dont begin to gain weight for quite a while after finishing rads. I had to learn all this the hard way! During my recovery I drank the milkshake below, many days I had 2 or 3. This will help ....


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. Adding one (or two) to your daily intake will help hit your minimum daily calories.


(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
Joined: Apr 2016
Posts: 13
punkin Offline OP
Member
OP Offline
Member

Joined: Apr 2016
Posts: 13
I am having pain radiating to my ear and jaw on the side that is still healing. Especially during eating. I'm wondering if I have a blocked salivary gland as well as the healing sore. Under my chin has been more swollen than normal lately as well. I will be going to the ENT tomorrow.


Suzanne B 62 non-smoker
04/07/2015 Excision of left tonsil with surrounding tissue
04/11/2015 Biopsy results SCC of Tonsil HPV16
04/23/2016 New diagnosis oropharyngeal cancer
05/12/2016 Radiation begins each weekday X 7 weeks
05/17/2016 Chemotherapy start
07/01/2016 treatments complete
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
Hopefully this can easily be fixed by your ENT. At least make sure your doc gives you something to get your pain under control. Good luck and please keep us posted.


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

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5