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#148796 - 04/27/12 02:21 PM Getting back to eating
AvatarMN Offline
Contributing Member (25+ posts)

Registered: 01/28/12
Posts: 26
Loc: Minnesota
Well, I'm 15 days out from my last chemotherapy treatment, and 30 from my last radiation. Pain is almost entirely gone from my mouth and throat, it was pain that stopped me eating and going on the feeding tube, before nausea or inability to swallow. I have very little nausea, and did all through treatment, so that was nice.

My obstacle to getting back to eating is like... it's more pychological than anything, I think. It's strange, and I didn't expect it. Things don't taste that bad, and the throat is working fine (I do only a little gagging, I have way more problems getting pills down than food), and it doesn't hurt... but when I start to eat it's just "Oh god, I can't stand this much longer." I don't know what it is. Does it seem so unnatural and wrong to be having stuff in my mouth and swallowing it when the lack of taste makes it seem so un-foodlike? I've been experimenting with yogurt, pudding, and egg salad so far. I think I'll try to going back to the mostly liquid diet I was doing for weight loss, before treatment started. Juices, shakes of almond milk/yogurt/flax protein, and thinner soups without a lot of bulk (asian soups can be counted on for that, I love miso soup). Things that are just drank down with little or no chewing. I've lost 75 lbs in 19 weeks, but I'm really happy about it. I'm still 300 lbs and have a dream goal of 175 lbs, I would be so happy if I could get to at least there. Dieting responsibly of course, with doctor consultation and approval.


Edited by AvatarMN (04/27/12 02:26 PM)
Edit Reason: spelling
_________________________
-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler

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#148797 - 04/27/12 05:07 PM Re: Getting back to eating [Re: AvatarMN]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8474
Loc: PA
Nice to see you are checking in after finishing all your treatments. Its not easy relearning to eat regular food again. Your mouth is probably still pretty sensitive so texture will play a big role in what you can eat. You should begin to see some improvements very soon with the taste of certain foods. It will slowly get better until about the 2 year mark.

Im almost positive I already gave you the list of easy to eat foods. Check out some of the things on there as you get back to a regular eating routine. Keep trying different foods. One day something could taste horrible but next week it might be the best thing you ever have eaten. My staple foods are smooth peach yogurt, maple oatmeal, chocolate milk and cheesecake. I know you are trying to lose weight but please be very careful. Your body needs higher calories to recover. Try adding some high protein whey powder to your drinks to increase your protein intake. Protein is very important in the healing process. Ive discovered some protein shots called Proasis in the drug store. They are only 110 calories in 2.9 oz but they have 25 grams of protein. My dietitian told me these 'shots' are excellent for patients who are in recovery mode.

Congrats on finishing the treatments! Hang in there, recovery can be a long process. In a few weeks from now you will notice you will be doing much better. Keep up the good work!!!! best wishes with your continued improvements! smile


Check out the list and on page 7, post 147502 is the link to Proasis. It will take you to the item on Amazon (which in turn will give OCF a small kickback).
Easy to Eat Foods List, Porasis
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148798 - 04/27/12 05:11 PM Re: Getting back to eating [Re: AvatarMN]
MissBazinet Offline
Supporting Member (50+ posts)

Registered: 03/16/12
Posts: 50
Loc: Phoenix, AZ
Ben, I'm 2 weeks out today from 38 RADS. I didn't have to do Chemo so I can't speak on that but I was just thinking last night...it's almost like I'm afraid to eat. It's always the unknown, isn't it? I mean, we've been doing this our whole lives but it's just like someone who has to relearn to walk or write. We have to relearn how to eat. It surely doesn't help that we can't really decipher tastes out of the gate or that things don't taste like we remember. I've been able to do puddings, yogurt, hashbrowns with sour cream and fish w/ white rice has been a huge accomplishment. Meats like chicken and beef have been a little more difficult this early on but I've tried it all just to see where I'm at. I was able to taste french fries, a seasoned, grilled hamburger patty with mustard but not the ketchup. Last night I ate rice and beans with rolled tacos, cheese and a little pulled beef. The rice and beans weren't as strong as the tacos and I was able to handle some green salsa that helped add a little flavor! I would encourage you to continue to try foods as long as your pain is gone. I eat really slowly and I'm used to eating somewhat cold food towards the end. lol Oh well... Oh yeah - I tried Jambalaya with Kielbasa. Oddly enough I couldn't really taste any of it and the spiciness made my gums a little irritated. I don't know if this helps but I just wanted to give you some encouragement as I am in the beginning stages of this eating again thing and was afraid I'd never be able to eat some of my favorite foods again. I'm just a 5'7" 125lb girl down from 150lbs and I don't fit into any of my clothes anymore so I'm determined to eat! Haha smile Hope this finds you well.

MissB
_________________________
Female,28 yrs old,Non-Smoker/Social Drinker
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Living life in spite of cancer and not in fear of it!

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#148801 - 04/27/12 05:36 PM Re: Getting back to eating [Re: MissBazinet]
AvatarMN Offline
Contributing Member (25+ posts)

Registered: 01/28/12
Posts: 26
Loc: Minnesota
My huge stores of an extra 150 lbs of fat have a lot of calories to draw on. wink And I do make sure to eat high protein. The flax protein I mentioned in my shakes, and there's some in the soups too.

Miss B, I'm shocked as heck by what you're eating. Meat, rice, flippin' tacos?! Wow. You had more rad treatments to the tongue than me, a week more recently than me, and you're accomplishing this, I'm very impressed. You can't be as scared of eating as I am. And I do think you're right about that being a factor. I'm pretty sure I psych myself out when it comes to pills, getting anxious and thinking about gagging and then I think myself into a problem.
_________________________
-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler

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#148802 - 04/27/12 06:46 PM Re: Getting back to eating [Re: AvatarMN]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Hey Ben!

Recovery takes time my friend and let me just say this to be clear. Your fat stores will do nothing to help your body recover from treatment, adipose tissue (body fat) is like the "extreme reserve tank" that your body will tap if it needs energy. In fact it will break down lean muscle mass for energy first which leaves you weakened, and take into consideration that there is a direct link between percentage of lean muscle mass and survival rates from cancer. (http://well.blogs.nytimes.com/2008/12/19/muscling-away-cancer/) (http://www.ajcn.org/content/84/3/475.full)

That being said loading up on massive amounts of protein can be harmful as well, especially while on medications due to how it affects your kidneys. Recommended intake is .55-.70 grams of protein per pound of body weight in healthy individuals, I'd recommend the low end while on medications due to kidney function. Split that intake up through several small meals as your body will only be able to absorb around 30g (for men, 20g for women) at any one sitting. The rest it will pass.

I just wrote up a fitness and nutrition regime for another survivor who is around 300lbs as well and wants to lose weight and gain lean muscle mass, I can help you as well if you'd like, I'm a fitness freak. I would wait until you are recovered before starting any physical activities however the nutrition you can start at anytime. Based on your weight alone your calorie intake to maintain 300lbs will be somewhere around 3500 calories per day, some of that is dependent on height, age and activity level so it's a rough guestimate.

My advice would be this though for nutrition while you are in recovery:

At least 3000 calories per day
Carbs: 338 grams (45%)
Protein: 150 grams (20%)
Fat: 117 grams (35%)(mono & poly unsaturated, restrict saturated)

Steer away from starches and sugars due to their effect on blood sugar. Use whole grains (oatmeal), good fats (dairy, olive oil, nuts, coconut oil etc) and lean proteins for fuel.

After recovery I can set you up on a more personalized plan if you want just know that it's a lifestyle change and there is no magic bullet for weight loss, nutrition and exercise with proper nutrition literally being half the battle.


Good luck, keep your chin up 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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#148804 - 04/27/12 07:46 PM Re: Getting back to eating [Re: EricS]
MissBazinet Offline
Supporting Member (50+ posts)

Registered: 03/16/12
Posts: 50
Loc: Phoenix, AZ
Eric - Being that you're a fitness freak maybe you would know a little more about this... Obviously, I've heard SO many things about survivorship and healing and eating after treatment. Is there anything I should cut out of my diet? (Someone told me I should limit my sugar intake?) At this point I'm just trying to eat whatever I actually can and get in as many calories as I can a day. Everyone keeps telling me, "It's not going to be that hard to put 25lbs back on." But they also didn't have cancer and haven't been through treatment and don't know what it does to your body. Meh. :-P

MissB
_________________________
Female,28 yrs old,Non-Smoker/Social Drinker
T3 N1 M0 SCC Dx 11-10-11
11-23-11 Left Hemiglossectomy
11-30-11 Modified Radical Neck Dissection
01-25-12 Removed another spot on BOT, skin graft (left thigh)
38 RADS Tx Finished April 13, 2012
Living life in spite of cancer and not in fear of it!

Top
#148805 - 04/27/12 08:30 PM Re: Getting back to eating [Re: MissBazinet]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
MissB!

Positions in nutrition change all of the time with fad diets, new studies etc so I like to stick to the basics. I don't buy into the newest crazes etc but I do research everything before I put it into my body really.

I'm a hick from northern Idaho and was raised in hunting and farm country. What city folk call "organic" we call "sh!t out of the garden". I guess I look at it like this, mother nature knows best so I keep things simple for myself as much as I can and steer away from most of the processed foods out there as they are packed with saturated fats (bad) and sugar, which in our society is used excessively.

Sugar (and high fructose corn syrup etc) does a number of things to the body when taken in excess, nerve damage, blood vessel damage, heart damage, kidney failure among other things. I'm sure Cheryl will be along shortly and express her view that sugar causes inflammation which increases the risk of cancer (she'll also probably have a few "autocorrect" issues as she'll be using her iPad lol). I haven't read up on the science of that position so I won't comment on it, just that we understand that sugar is a culprit to poor health, weight gain and other chronic conditions like diabetes.

Starches like potatoes and white rice will raise blood sugar levels in the body as well due to how the body processes them, processed white flours will do the same. The more we can control our glycemic index the easier it is to maintain a healthy weight.

Stay away from saturated fats for the most part, but keep in mind that not all fats are bad and our diets should consist of between 20-30% of good fats, mono and poly unsaturated fats like Olive Oil (although at temperatures over 320 degrees this becomes hydrogenated which makes it bad for you) Canola Oil (good for cooking over 320) coconut oil & butter (medium chain triglycerides) nuts, fish etc. Focus on good Omega 3's and controlled Omega 6's (in a 1/6 ratio).

Focus on fresh fruits and vegetables or frozen if not in season, lean meats (depending on your dietary views of course like vegan/vegetarian) like lean beef, lean pork fish, and turkey, white chicken breast etc. I like to know where my food comes from so I buy locally produced fruits and vegies (and grow some) as well as locally raised meats which is easy for me due to where I live (BFE Idaho). But really whatever you have access to.

Eating healthy doesn't have to be a daunting task, I'm on almost an exclusive liquid diet due to after effects of treatment and surgery so I blend, juice and use protein powders etc.

Healthy ratio's in gaining weight you should really focus on lean proteins and good fats while controlling your carbohydrates (complex carbs, whole grains etc) to around 40% of your diet.

Hope that helps, and just to be clear I'm not a nutritionist, just a hick from Idaho smile


Eric


Edited by EricS (04/27/12 08:31 PM)
_________________________
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.

Top
#148825 - 04/28/12 10:05 PM Re: Getting back to eating [Re: EricS]
AvatarMN Offline
Contributing Member (25+ posts)

Registered: 01/28/12
Posts: 26
Loc: Minnesota
Thanks for the diet tips, Eric.

I just ate a whole can of chicken noodle soup today, and was over the moon and declaring myself ready to get off the feeding tube. Then I ate some oatmeal and gagged constantly until I stopped, and that let the wind out of my sails a lot. Wonder if cream of wheat would work. I'll have to get some.
_________________________
-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler

Top
#148826 - 04/28/12 10:35 PM Re: Getting back to eating [Re: AvatarMN]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8474
Loc: PA
Cream of wheat is easier to eat than oatmeal. To start off with that I suggest making it very thin so its more liquidy.

Chicken and stars soup is another easy one. Also canned peaches should be fairly easy too, they slide right down.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148835 - 04/29/12 02:08 AM Re: Getting back to eating [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4963
Loc: Toronto canada
Hey congrats on getting through it. wink
_________________________
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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