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Nate82 Offline OP
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Im home, still pretty swollen and red in the face and neck. Glad to be here though, CT Scan monday, Then the gameplan for treatment that wednsday. They say either way I need at least 4 more weeks to heal properly before they start anything. Tongue still pretty damn swollen but plastic surgeon said it will be 70% smaller in a few weeks. I feel like the elephant man and hope the swelling in my face and neck get better soon but i am finally relaxing and sitting up all the time so hopefully that will help.

Seems like when i sleep on my side the side of my face and neck look more swollen. Just know my friends that if you didnt know I am one relentless tough SOB! Sure we were positive and the team seemed so sure I caught this recurrence very early with my obsession that this was finished with surgery but now here we are. We cried for a few minutes that day mainly because Mom is upset about the torture I am enduring but immediately we pulled together and I looked everyone in the eye and said were done, now lets kick some ass!Any tips for my swelling and redness in neck? Keep moving around the house maybe? Thanks, I love you all...you guys ready? I sure as hell am.

Your Friend From Tejas',
Nate


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
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You are such a SHORT time out of surgery, and while I know you have a proactive "kick-ass" approach, with regard to the swelling I don't know if there is much you can do except just allow your body the time it needs to heal. I thought you looked amazing and not all that swollen in light of what you have been through!! Relax, rest well....those are things that help the swelling.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Well in my understanding you had lymphnodes removed and as with Ron everytime he sleeps on whatever side because of the lymphnode removal he swells up during the night because all the fluids rest there and have no place to go, he looks like the elephant man every morning when he first wakes up and within an hour or 2 the swelling goes away and he looks fine again. And boy when I got on FB last night THERE YOU WERE first picture to show up looking "bright eyed and bushy tailed" and I smiled! I showed Ron your picture too, sorry didn't write anything, I had just gone on and he came up to talk to me and I had to shut down he hates when I am on there thinks I have a boyfriend or something the goofball I told him ya, I can't keep them off me! lol But you look fantastic and I soooo love your fighting attitude. Ron said if he can make it you can do it too, he's made it thru 3 bouts of the C. He's like a fricken cat with 9 lives thank God, I don't know exactly how many he has left cuz he used quite a few of them in his younger years let me tell ya he's got some stories! You get some rest, get that scan done and when you find out what's up get the gloves on ready to kick some "arse" as they say down under I think it is? Is that OK Christine? smile
Hugs to you and to your momma too!! Cuz I'm a mom of a 28 yr old son born the same day you were! AND VIRGO'S ROCK!

Last edited by ChristineB; 09-30-2011 12:18 PM. Reason: typo, LOL!

CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Ok Nate, let's talk nutrition!

As we both know, top athletes live and die by nutrition. They understand that what they eat (and when) is just as important as how they train. If you think about what physical training is it's just breaking down your body so that it builds itself back up even stronger. To do that it needs fuel and building blocks, which is exactly what every healing patient needs!

When I first looked at rebuilding my body, I knew my challenge was going to be how to get all of the nutrients I need when I'm restricted to liquid only (99% of my diet is liquid) so I started reading.

Understand that a calorie isn't just a calorie and there is more to nutrition then getting x amount of calories per day and trying to meet or exceed RDA's (recommended daily allowances). When your body is going through more then the average persons is on a daily basis it needs more of certain minerals and nutrients so just throw RDA's out the window in your case.

VHC is easy to be sure and popular on these forums however in my opinion is kind of spendy. It's 560 calories and mostly from carbohydrates and fat and low on protein. Protein provides the building blocks for your body (aminos) and is essential for your body when in the hypermetabolic state of healing. In my opinion, and I'm not a Dr or a nutritionist (just a guy that's built a hell of a physique on liquids), protiens and long chain triglycerides should be a solid staple in any recovery diet.

I use regular Ensure (250 calories) as the base of my meals. It's cheap at Costco (29.99 case of 30) and it mixes with anything as it's not really thick has the vitamins and minerals etc...it's low on fat (6g) high on carbs (40g) and OK on protein (9g). I "eat" six times a day, I have three meals a day that are the "big" meals where I get most of my calories and protein and three meals that are are light and quick.

The big meals consist of an Ensure, 1tblsp Olive Oil ( $19 Costco for 6 liters, 120 calories, 14g fat), 1 scoop Cytosport Whey Protein Powder ($30 Costco for a 6lb bag. 27g protien, 2g fat, 3g carbs, 140 calories per scoop) and a cup of whole milk (146 calories, 8g fat, 13g carbs, 8g protein). If we add all of that up, it's 656 calories, 30g fat, 56g carbs, 44g protein per "big" meal.

Small meals consist of 1 Cup whole milk, 2tbsp peanut butter (190 calories, 16g fat, 7g carb, 8g protein) 6oz Yoplait Yogurt ($9.53/18 6oz cups at Costco, 170 calories, 33g carbs, 1.5g fat, 5g protein). That adds up to 506 calories, 25.5g fat, 53g carbs, 21g protein.

Total Calories 3486, 166.5g fat, 327g carbs, 195g protein. Roughly 24% fat, 47% carb and 28% protein. Now keep in mind this is a "building/gaining" nutrition plan and not a "maintaining" plan which is why some numbers are so high however the ratios are still in the "Golden Ratio"(40-50% carbs, 20-30% fat, 20-30% protein). Normally for maintaining I'd be consuming 2500 calories and a target of .55-.91g protein/lb of body weight.

Now I've been playing with this diet for a while now and making adjustments etc, but this is basically what I've used to gain good weight. Weight gain and muscle is why the calories are 1000 over what I should be intaking to maintain my weight and the protein intake/lb of body weight is high along with the fat intake ratio. It's a game I play with my body, when I hit my target weight I'll lower my calories and adjust my ratios to have a 50% carb, 25% fat 25% protein that's the ratio I believe promotes optimum hormone production in my body.

Higher fat percentage helps testosterone levels and more protein helps rebuild the muscles I'm tearing down. The more you learn about this stuff the more you realize how tight the balancing act is between optimum hormone levels and the ratios of food in your diet and because everyone is different there isn't a "standard". It's not just about what you eat either, but when. Always eat first thing in the morning and then get the majority of your protein post workout, eating 5-6x per day you need to really be sucking down a shake every 2-3 hours too. If I'm thinking in patient terms facing rads, I'd say get the most protein after radiation.

Supplements play a huge part as well, especially since you are needing more of everything to build up your body. I would say the important vitamins and minerals for you would be Zinc (50mg as not to get toxic levels), Magnesium, B6 (this combo bodybuilders use to promote testosterone levels and muscle gain. Zinc is very important in healing as well), B12, Niacin, CoQ10, B5, C (2000mg+), A (as beta kerotine) will all support immune and energy. I also use Ginseng, Tumeric and Flaxseed Oil and I blend all of these into my first shake of the day(it's the only time I use a blender actually as everything else mixes very nicely in a whisk ball shaker bottle from Walgreens $8 and there are no chunks if you don't use fruit yogurt). I use other supplements as well but those I don't think would be helpful to the "healing" patient.


With anything Nate, ask your Dr and or a nutritionist before implementing anything. Sorry for the novel, I have more thoughts on this subject but the book is getting rather long at this point however I hope it was helpful.

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.
EricS #140846 09-30-2011 12:51 PM
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Nate, as Eric suggested get this checked out before changing your diet. Im always extra cautious about those things. Specifically ask about the zinc. It has been discussed here before. Here is the old thread.

Zinc thread


Last edited by ChristineB; 09-30-2011 07:02 PM.

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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Gary is spot on with most of that however like anything check with your MO. There is a huge split over antioxidents in the oncology community with different views. Tumeric is a supplement I used through tx and has a powerful antioxident in it that was just featured on the OCF news list. As always talk with your MO. Thanks for the link Christine!


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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Nate82 Offline OP
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Thanks, I love you guys...I am only able to get in about 1500 cals in the peg right now because I get hot headed and feel sick. Trying to stretch my tummy back out. I am goaling for 6 Boost Plus in at the moment but only nailing about 4 right now. The Boost has Prebio 1,35%,Iron 25%,Niacin 25%,B12 35%,Zinc 30%, Vitamin C 100%,Vitamin D 20%, B6 35%, etc. in each 8oz. bottle. Can I put whole milk through the tube? I excercise 4 times a day since ive been home by walking my moms hall 10 times, so with yesterday and today I have accomplished that 6 times, dizziness is now gone. I have my swallow test next week, then I can get back on my Smoothies I hope, I havent swallowed to much but a sip a day because I fear what the docs do in what happened last year with the flap explosion. I swallow my own saliva fairly well but am still using the suction machine for drool and such.

You guys are my coaches, we made it to the championship last year to be shut down in the big game by this recurrence. Now it is time to win this MOFO! As you all have previously stated, lets get to the scan and gameplan next week and then we work on our OCF gameplan. Think positive for my swallow test, but peg stays in for possible rad treatment. I love you all, time to get yet another OCF Title on the team, Ready?

Sincerely,
Nate

P.S.- Thanks Eric for the novel, Korinne understands it well and will tweek it as we go when I can start back on soft food.


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
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wow you are having your swallow test quicker than Ron did. Good for you and keep swallowing! I am thinking you can get whole milk down wait, you don't have the NG that will be a Christine question sorry. smile


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Jan 2009
Posts: 1,844
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Awesome Nate, love the attitude.

You can start upping those calories by just adding the Olive Oil right to your boost, a tablespoon isn't very much and will shoot right down your tube brotha, adds 120 calories and 14g fat, it'll help.

You are in my heart 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.
EricS #140867 09-30-2011 06:23 PM
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Watch it Nate - Eric's gonna have you all buffed out in a matter of months!!!! Saw your pics on Facebook - so glad to see that sparkle in your eyes despite all you've been through!! You look SO good!

PS - you can put whole milk through the tube. Lots of protein and calories and it's plenty thin enough that it won't clog the tube. Keep swallowing your saliva - it will help keep the muscles of your swallow in motion in preparation for your swallow test next week.

I'm in your corner Kid!


Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
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