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Agony - trying to hold it together #200034
04-10-2020 12:49 AM
04-10-2020 12:49 AM
Joined: Jan 2020
Posts: 44
Los Angeles, ca
K
Kevster Offline OP
Contributing Member (25+ posts)
Kevster  Offline OP
Contributing Member (25+ posts)
K

Joined: Jan 2020
Posts: 44
Los Angeles, ca
Nearly halfway through rads to tongue and neck and I am in absolute agony. Every time I swallow it feels like someone is stabbing my throat. On OxyContin 10 mg every four hours and it’s not helping much. Guess I have to increase dosage. I go back and forth between soldiering through and breaking into tears wondering how I’m going to do this. Back of tongue is swollen. Feels like it’s narrowing my throat so that swolloing tiny pills has been difficult. Using magic mouthwash to get down three shakes a day. Trying to take it one day and meal at a time but it’s very difficult to do. I try to avoid swollowing as much as possible though I know that’s not good. Already seeing therapist and taking antidepressants so those options have been exhausted and I’m not sure psychiatric meds make a difference. Even someone whose brain is swimming in serotonin would feel the same way. I’m coughing up mucus. Not sure if it’s due to a cold or the fact that a lot of this saliva is going down my throat and maybe my neck treatment itself is causing it.

Last edited by Kevster; 04-10-2020 12:53 AM.

Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Scheduled for six weeks of radiation starting 3/25/20
Re: Agony - trying to hold it together [Re: Kevster] #200036
04-10-2020 11:08 AM
04-10-2020 11:08 AM
Joined: Jun 2007
Posts: 10,475
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,475
PA
Heres a list if easy to eat foods along with several other things that may help with your intake. It was originally created to be a guide to help patients who are trying to relearn how to eat after going thru rads but its for anyone who has any difficulty in eating. The foods listed are less spicy and generally have a smoother texture which helps patients who usually have very sensitive and sore mouths. The chocolate peanut butter shakes to me are delicious and very high in calories smile. I also have a couple links that explain in more detail about the importance of pushing your intake to be higher especially during rads and recovery. It really is VERY important!!!


Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods


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


(SORRY!!! But the way Ive always cooked is by eye, not measuring things so 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
(as with all different product taken... 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, let the shake sit for a half hour so it melts a little or add more milk to thin it down to what works for your own personal preferences. Ive also recently discovered something new... powdered peanut butter which can be used instead of the usual big jar kind. Most OC patients lose their taste for chocolate right away and it takes them a little while to get it back after finishing... for some strange reason I could still taste it a little especially in the giant shakes or ice cold yoo-hoo which helped soothe my very sore throat. Maybe try drinking things that are ice cold, it could help with your throat swelling?


Livestrong - losing weight with chemo

Livestrong - Calorie Intake Importance

Diet and Nutrition during treatments


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
Re: Agony - trying to hold it together [Re: Kevster] #200037
04-10-2020 11:23 AM
04-10-2020 11:23 AM
Joined: Jun 2019
Posts: 148
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 148
Ah mate, I'm sorry to hear you're in pain. The end is nigh and you're doing so well. Cold things help massively. I was drinking iced frappucinos in October, just to get relief and calories. Gargling warm water helps too, it also refreshes the mouth. Another calorie booster is making a sweet coffee with cream instead of milk, or (if you can taste chocolate), melt a bar of chocolate into cream. You can drink it warm or cold.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin
Re: Agony - trying to hold it together [Re: Kevster] #200049
04-12-2020 08:28 PM
04-12-2020 08:28 PM
Joined: Nov 2019
Posts: 3
K
KD715 Offline
Member
KD715  Offline
Member
K

Joined: Nov 2019
Posts: 3
Unfortunately I don’t have any advice for you, but my husband is the same boat as you. Friday marked his half way point and he’s in so much constant pain. He uses magic mouthwash, that temporarily takes the pain away. He’s on a liquid only diet and it needs to be very bland, or it irritates his mouth. He also take 5mg oxy, which isn’t helping much. His spirits are pretty low and he’s not sure how he’s going to get through the second half of this treatment. He has an appointment with his doctor tomorrow, so I’m hoping he can get something to help with the pain.

Re: Agony - trying to hold it together [Re: KD715] #200050
04-12-2020 09:44 PM
04-12-2020 09:44 PM
Joined: Jan 2020
Posts: 44
Los Angeles, ca
K
Kevster Offline OP
Contributing Member (25+ posts)
Kevster  Offline OP
Contributing Member (25+ posts)
K

Joined: Jan 2020
Posts: 44
Los Angeles, ca
Sorry to hear that. My doc upped my oxy to 10 so not sure if that is a possibility for you. I took a notepad and wrote backwards from 30 to 1 as a countdown clock. It’s been helpful to rip off a page for each treatment. It’s awful and hard to take it one day at a time - I’ve even been telling myself “one meal at a time” - which is admittedly the best advice but the toughest to follow. My wife keeps repeating to me that this is temporary, which has been helpful because although I understand that fact intellectually I often “forget it” emotionally. Intellectually, I also know that rads are helping me fight the disease, but my emotional brain views it as pure torture. That’s another struggle. Prayers for you and your husband. This forum has been so helpful to me as oral cancer was something I’d never heard of before being diagnosed.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Scheduled for six weeks of radiation starting 3/25/20
Re: Agony - trying to hold it together [Re: Kevster] #200051
04-13-2020 06:24 AM
04-13-2020 06:24 AM
Joined: Aug 2019
Posts: 51
B
Barry Toronto Offline
Supporting Member (50+ posts)
Barry Toronto  Offline
Supporting Member (50+ posts)
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Joined: Aug 2019
Posts: 51
Hang in there. The pain you are enduring is a byproduct of your rads killing the disease - your primary goal. You also sound like you are in too much pain to worry about the tedium of isolation from Covid (silver linings and all).


Preliminary diagnosis of SqCC at base of tongue August 2, 2019.
Biopsy surgery on August 15
Confirmed sqcc from biopsy Aug 20 - hpv type 16
33 radiation treatments ended October 25, 2019.
3 (large dose) cisplatin treatments.
Re: Agony - trying to hold it together [Re: KD715] #200053
04-13-2020 09:27 PM
04-13-2020 09:27 PM
Joined: Jan 2020
Posts: 44
Los Angeles, ca
K
Kevster Offline OP
Contributing Member (25+ posts)
Kevster  Offline OP
Contributing Member (25+ posts)
K

Joined: Jan 2020
Posts: 44
Los Angeles, ca
Hi KD: Just wanted to let you know that I bumped up my oxy to 10 mg dose and it has made a big difference. Hope it might do the same for your husband. Also I’m really finding value in the salt water baking soda mix, which I’m talking every 30 minutes or so. Whenever I accidentally touch an ulcer and am in pain, i swish some of that and find it calms it down a bit. Also helps with phlegm, which has become a big problem for me.

Last edited by Kevster; 04-13-2020 09:28 PM.

Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Scheduled for six weeks of radiation starting 3/25/20
Re: Agony - trying to hold it together [Re: Kevster] #200054
04-15-2020 08:03 AM
04-15-2020 08:03 AM
Joined: Jun 2019
Posts: 148
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 148
The salt water baking mix combo was amazing. I don't think I would have coped without it. I found warm water helped too.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 glossectomy neck dissection RFFR
33 doses RT 17th Sept '19
2x cispltin

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