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Joined: Jun 2013
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Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Thanks for all the clarification, Christine! I certainly wouldn't advocate Fentanyl or such for migraines or anything ... was only comparing the ingredients he was talking about to other meds I had, which I do take for migraines. (Although if somebody came out with a patch that would fix migraines, I'd totally sign up for the testing of that! LOL.) The patches really are for the long term big stuff ... and radiation definitely counts as Big Stuff. Especially near the end.

I keep hearing about all this mucous stuff and wonder if I somehow got 'lucky' on that because of being on the PEG feeding tube ... I couldn't eat, wasn't even close to being able to eat, only to swallow a bit of water for practice once in a while, so I don't even recall it being an issue. Maybe I just don't remember that, on top of everything else. It sounds dreadful. How on earth I missed that, who knows. ((Hugs)) to all of you who did or still have it!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
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
CM, what you described is what I also went thru. In my case I hit the wall around week #2 and it was all downhill from there. You're actually doing much better than many who go thru rads. The very last week of rads and first couple weeks after finishing are the worst of it. Those days can be very difficult to get thru and follow along with eating, drinking, meds, treatments, etc. Hopefully you have someone that helps take care of you. Being a caregiver is definitely not an easy job. The caregiver can track your calories and fluid daily intake to make sure you arent slipping. Losing weight is a sign for medical professionals that you are struggling.

Heres some info Ive previously shared with others who were struggling. This info can come in handy and help you get back into taking in at least 2500 calories and 48-64 oz of water every day....

Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.


List of Easy to Eat Foods

Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2500 calories depending on how its made. The list of easy to eat foods may will you too, they mostly have a smoother texture and are easier to eat than most other foods. I used to like the canned peaches, they would slide right down with minimal effort chewing and swallowing.


(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 whatever consistency works best for you.


PS... Centrum has an adult liquid multivitamin out. Ive been taking it daily for about 3 months and can honestly say its helped me tremendously. Maybe you could try it? Make sure you ask your doc to make certain the multivitamin will not interfere with your 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
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