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John, most of us would not normally need so many calories during an average day. But right now your body is burning up calories faster than you can take them in. I know 2500 calories sounds like alot but it is not, it is the daily minimum you will need to get thru this. Even better would be to take in 3500 calories daily. Your body must have enough calories to fight not just the cancer but also the effects of treatment. I cant stress this point enough! I had no caregiver and I struggled thru the whole thing. I lost 65 pounds and ended up being hospitalized a few times for malnutrition and dehydration. I am trying to help you to avoid these mistakes. You do not want to get stuck in the hospital!!!!

I lost 65 pounds in 6 weeks and it never went back on even when I finished and would take in 6000+ calories daily. I would make huge chocolate peanut butter milkshakes which were 2000+ calories each, I would drink 2 or 3 a day. Here is a list of easy to eat foods which should help you to take more things in. Try canned peaches, they will slide right down. Let me know if you want my recipe for the chocolate, peanut butter milkshakes.

List of Easy to Eat Foods





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
is the recipe for chocolate peanut butter milkshakes around somewhere?

Alex can tolerate chocolate flavours and used to love peanut butter although because of its texture and stickiness we have not even considered trying it with his swallowing issues. Of course we haven't considered putting it in a milkshake either.

John of Arc - yes you can survive on boost drinks alone - provided they are the high calorie, full meal supplement type. Alex has been taking Ensure Plus (or other brand) as almost his sole source of nutrition for the past two years. Like you, he was thin to begin with so his failure to eat during treatment became an emergency and he was admitted to hospital for 10 days. Trust me, you want to avoid that, and the way to do it is pay attention to Christine's post about taking on all the calories and fluids you can manage.

Like you Alex can't understand why 2000 calories isnt enough because he was never a big eater and managed to survive on 2000calories or less BC. He is a smart boy, but still manages to fail to grasp the concept that if he is not gaining weight then he needs more calories smile

Good that you have worked out to get up early take your meds and then go back to bed and wait for them to kick in. Alex also used the same strategy. Works to avoid nausea and vomiting too if you have that issue? "Waking up twice" seemed to improve his overall demeanour and ability to cope with the world too. It was nice that he was able to see the bright side while watching me get up and shiver my way through the shower at some ungodly hour in order to go make a living. He usually got up just before I headed out the door and had a cup of coffee with me (well, I had the coffee - he waved his about until it was stone cold).


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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3-4 cups chocolate ice cream (850-1130 calories)
1/4 cup choc syrup
1/2 cup peanut butter (750)
2 scoops dry Carnation Chocolate Instant Breakfast powder
2 cups whole milk (300)(add another cup if like a thinner shake)

Blend until super smooth. Top with some whipped creme.


You can even substitute one cup of whole milk for one cup of 1/2 and 1/2 which will boost the calories even higher.


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: 117
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I think for now until the swelling in my tongue goes down and I stop biting it causing sores boosts are the only real option for me. I can gulp them down pretty quick.

Has anyone ever tried aloe juice? I think my tongue is slightly burned from the radiation treatment and almost all foods just feel like my tongue is burning. I was wondering if the aloe juice would help with this?


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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"OCF Canuck"
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John look up manuka honey under searches. It may help if you have any question pm me... Chocolate is acidic and ice cream at this point will likely hurt because I was very sensitive to temperature it may be e same for you. Chug away I survived on high calorie ensure and boost. Hugs!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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What I'd like to know though is why everything but the boost shakes makes my tongue feel like it is burning. Is it because my tongue is "sun burned" like they said it might? There are so many things I'd eat if I didn't have to be in pain to do so


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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John, radiation sucks brotha and will burn the hell out of your tongue and cause pain. It could also be thrush which is common, talk to your Dr to see if it's thrush and they'll give you meds for it.

Magic Mouthwash will help, also maybe up your pain medications or just stick to Boost. Citrus (acid), pepper, vinegars bases etc will hurt and anything with them in it will hurt, but it won't last forever my friend, just a process.

Keep hydrated, drink lots of water as we've noticed those that focus on nutrition and hydration have less severe side effects. Focus on high fat/protein intake through treatment (add protein powder and olive oil to your boost) and stick the hydration brother.

Take a deep breath, focus on what you can control which is your attitude, hydration and nutrition.

Keep plugging in here John, we're here to help as we can my friend.

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Thanks erikS. We found something nestle makes to put in food and it double the already high calories. So looks like I'm just going fo have to keep on keepin' on with the boost until my tongue heals.


Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
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John,also really make sure you get enough water in. Even if you think you've had enough, get some more. As Christine and Eric said, hydration is very important and will keep some of the nastier side effects away. I "ate" a lot of crushed ice...not ice chips because they have sharp edges, but sno-cone type of ice. My hubby would just put cubes in a ziploc baggy and smash with a hammer. I went thru liters of water that way and kept my swallowing muscles working and it was much easier than actually sipping water. good luck to you. Keep up the good fight.

and add the Manuka... that was a good tip from Cheryl that I used as well...it soothes the hot spots on the tongue. I would take a mouthful, keep it on my tongue as long as possible, then just spit it out. it really did help.

Last edited by Ingrid K; 05-08-2012 02:48 PM.

DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
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"OCF Canuck"
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One thing my drs told me was to rinse with the baking soda and salt mixture, they also said that if I wanted I could take club soda let it flatten at room temp, and then rinse swish and drink. It acts the same as the baking soda mixture, but since you drink it it helps heal and sooth all the way down, and is a fluid so it helps with dehydration.

If you can try buying a protein powder and add a scoop to one of your boosts. It will help you increase your protein, and calories as well.

Good luck... you can get through this.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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