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Eating #200281
07-26-2020 01:46 PM
07-26-2020 01:46 PM
Joined: Jul 2020
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Andy Columbia Md Offline OP
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Andy Columbia Md  Offline OP
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Joined: Jul 2020
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Hi. I had squamous cell cancer removed from the floor of my mouth in November 2019. I also had 10 lower teeth removed. After surgery I had 30 days of radiation. In June they discovered one of the brackets they had put in to hold the fibula bone in my mouth had a crack in it it They had to replace it on July 10th. I am back on soft food diet It has pushed back teeth replacement. The good news is desire to eat regular food is finally returning. The bad news is I can’t eat it. How do teeth impact eating and swallowing? How long can I expect What I will have for taste buds to come all the way back? I only have 4 teeth on the bottom. 3 on one side 1 on the other.

Re: Eating [Re: Andy Columbia Md] #200283
07-26-2020 11:33 PM
07-26-2020 11:33 PM
Joined: Jun 2019
Posts: 196
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
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Posts: 196
Hi Andy,

Loosing teeth shouldn't affect your ability to swallow, you just need to be careful with firmer foods as they may be tricky to chew into smaller pieces. My ex bf, who lost most of his teeth, could eat well, he just struggled with corn on the cob, tough meats, nuts etc
It might be worth eating soups, mashed vegetables ( with lots of butter and some cream), steamed fish etc for now, just to get used to your new mouth. I don't have a tongue but have some more teeth, but yesterday I managed to have a slice of very buttery toast to go with my soup. I dunked a small slice of toast in the soup, bit that piece off, chewed it and moved it to my teeth with my finger (and to check that it was mushed up) and then had some more soup to swallow it down. I couldn't have done that 4 months ago. It all takes time and experimentation.

Tastebuds returning varies from person to person. I could taste some strong foods (cheese, coffee, lemon, orange and chocolate) 2 weeks finishing RT, the rest are slowly returning over 9 months later. Some people's buds return quicker, some slower, some not at all.

Good luck on your food exploration


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Eating [Re: Andy Columbia Md] #200286
07-27-2020 05:46 AM
07-27-2020 05:46 AM
Joined: Jun 2007
Posts: 10,495
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 10,495
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Welcome to OCF, Andy! Congrats on finishing your treatments and the return of your appetite!!!

One of the very first things you will learn about OC (it actually applies to all medical conditions), is that everybodys different!. No matter how much patients appear on paper to be similar, no two patients will ever be exactly the same due to soooo many variables... its impossible. What one patient struggles with may barely affect another patient even when the two patients seems to be very similar. Every patient will respond to medications, treatments, procedures, recovery, etc in their own unique way. So many variables within a rare type of cancer diagnosis makes it difficult to compare or predict what could happen especially when talking about post surgical recovery.

Have you considered pureeing food? I know its not the most appealing way to eat but you have the flavor of things and it should be smooth where you can eat some things you previously thought you couldnt. I suggest talking to a nutritionist (as well as your doc) alternative eating for people like us who have had cancer making eating normally difficult or impossible. Since you just had surgery 2 weeks ago you are just recovering so you may surprise yourself and do better than you expect.

Even though all patients are different, most patients who went thru rads will begin to notice a slow improvement in their sense of taste around 4-8 weeks after finishing rads. This may come and go for a long time with you only getting the first bite or 2 being tasty then its back to the taste of cardboard. It can be a long road with the sense of taste being very slow to return plus either having an abundance of thick ropey gunky phlegm or an extremely dry mouth so bad that your tongue sticks to the roof of your mouth and is pretty much immobile until you take a couple sips of water. I dont know if its easier having only a couple random teeth or not having any at all. Im certain either way is quite a challenge when attempting to eat after rads.

I just finished writing a long reply to another member who also recently finished rads which you should find has helpful info that applies to your situation as well. Instead of reposting the same thing, Ill give you the link to that thread... Im also including the list of easy to eat foods. These foods should be a smoother texture, a little more bland and are easier to swallow so should be something you may want to try.

Best wishes with your recovery!!!


Link to New to Forum thread for other helpful info

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
Re: Eating [Re: ChristineB] #200290
07-28-2020 03:43 AM
07-28-2020 03:43 AM
Joined: Jul 2020
Posts: 7
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Andy Columbia Md Offline OP
Member
Andy Columbia Md  Offline OP
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Joined: Jul 2020
Posts: 7
Thank you so much. This is one of the first honest assessments of what to expect for recovery. My Doctor is very positive ( which is great) but somewhat unrealistic in what she has told me about recovery the past 8 months.

Getting the daily calories in has been a struggle. Having a goal of 3000 seems to work for me.

Have a great day.

Re: Eating [Re: Andy Columbia Md] #200316
08-07-2020 04:02 AM
08-07-2020 04:02 AM
Joined: Jun 2007
Posts: 10,495
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,495
PA
Your 3000 daily calorie minimum is a GREAT goal!!! Thats a wise plan many patients do not pay enough attention to. Some patients can take in even more (like 4000 or more a day) and still struggle to keep their weight on. No matter what a patient weighs doctors always like to see the patient maintain that weight while going thru cancer treatments and the long recovery phase. I too struggled during rads and wasnt the best example of what patients should and should not do. I quickly discovered all the kind and wise people here who already went thru the things I struggled with, they really were telling me what was in my best interest to do. During recovery your body burns up calories at a significantly higher rate making extra calories a necessity to help patients recovery phase easier.

Something I made almost daily to help maintain the higher intake was a chocolate/peanut butter milkshake which had a ton of calories per shake. I'll repost my recipe below so you can give it a try. When I cook I dont measure or always go exactly by recipes so the shake is very adaptable and can easily be customized to what each person likes best so they will drink the whole thing.


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.

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 new or different products used ... 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 when drinking ice cold yoo-hoo which helped soothe my very sore throat. Maybe try drinking things that are ice cold, (this always worked for me) it should help with any swelling you may still have?


Best wishes with your continued recovery!!! smile


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: Eating [Re: ChristineB] #200317
08-07-2020 04:10 PM
08-07-2020 04:10 PM
Joined: Jul 2020
Posts: 7
A
Andy Columbia Md Offline OP
Member
Andy Columbia Md  Offline OP
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Joined: Jul 2020
Posts: 7
Thank you. I tried the chocolate peanut butter shake. Delicious!

I am hoping to be able to try other foods soon.

So many here suffer with so much more but I am really sick of smoothies.

Re: Eating [Re: Andy Columbia Md] #200318
08-07-2020 11:42 PM
08-07-2020 11:42 PM
Joined: Jun 2019
Posts: 196
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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: 196
Check with your dietitian that can eat jello. It's a great food to practise chewing and swallowing. You can make it up by replacing the cold water with ensure. Even better if you can get hold of ensure juice plus.

I treated learning to eat like being a small child. At first we are reliant on liquids only, and then ,with time tears and practise, we gradually move to foods. Everything is in little steps. It's frustrating at times, but you'll find a place that works for you.

How are you at making soups and sauces? You can control thickness, add small lumps of cooked potato or sweet potato, soft cheese or even soft boiled/poached egg at the bottom of the bowl to give you texture and a challenge. I'm happy to share recipes with you and guide you through how to cook them to give you maximum flavour. I am in the UK, so will do my best to source similar ingredients for you.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Eating [Re: Dizz_zzey] #200323
08-08-2020 05:17 AM
08-08-2020 05:17 AM
Joined: Jul 2020
Posts: 7
A
Andy Columbia Md Offline OP
Member
Andy Columbia Md  Offline OP
Member
A

Joined: Jul 2020
Posts: 7
Thank you. I am really just starting back to solid foods. I was on a soft diet since my second surgery to replace the the Bracket holding the bone In my mouth. I go Monday August 10th to meet with my surgeon. I hope to get cleared for regular food though I’ll still be operating with limited teeth on the bottom for quite a while.

Any soup recipes would be helpful. I don’t have much of an appetite or sense of smell. Taste buds are there for something’s not for others

I love the UK! Went to London in 2006 with my daughter. We went to Ireland 🇮🇪 in 2013. (Not all yours 😀). And in 2018 I went to Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 with friends on a golf trip. Stayed in a castle 🏰!

Thank you for reaching out. This forum has been great.

Re: Eating [Re: Andy Columbia Md] #200324
08-09-2020 04:52 AM
08-09-2020 04:52 AM
Joined: Jun 2019
Posts: 196
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 196
I'm happy to help out.
The UK is great isn't it! I live on the outskirts of North London. It's so lovely being able to be in London (via train) within 30 minutes.

I'll post the recipes in different posts per recipe. I've chosen ones that have a huge flavours, as your tastebuds aren't great.

Pepperoni Pizza soup

Ingredients
2 medium onions sliced
2 red peppers cut into quarters
6 large tomatoes cut in half
6 cloves of garlic cut in half lengthways
2 tbsp butter
1 pack sliced pepperoni
800g chopped tomatoes (2 tins)
3 tbsp mild tomato salsa
500 ml chicken stock
1 ball mozzarella ripped up
150g brie or soft cheese of your choice, cut into chunks
Soy sauce to taste
Black pepper to taste

Method
Preheat the oven to 180c.
Place the tomato halves on the baking tray, cut side facing up. Push half of a clove of garlic into each half of the tomato until it’s covered by the flesh of the tomato. Season with pepper.
Put the quartered peppers, flesh side down, onto the same tray as the tomatoes. Place into the oven. Cook until the tomatoes are soft and slightly shriveled and the skin of the peppers are blistering.


Whilst the peppers and tomatoes are in the oven, melt the butter in a large saucepan. Once the butter has melted add the onions and put on a low heat to caramelise. Stir until the onions are coated in the butter.
Once the onions have caramelised, add in the pepperoni slices to release the oil.
By this time your tomatoes and peppers should be ready, so take them out of the oven to cool a bit.


Add the salsa into the pepperoni and onion mix and stir to coat everything in salsa.
Tip the garlic tomatoes and peppers, plus any juices on the tray, into the saucepan. Stir everything together and turn up the heat to medium.
Once everything has been mixed through, add in the tinned tomatoes. Bring to the boil and allow to simmer for 10 minutes with the lid on the pan.
After 10 minutes, give the soup a good stir and add in the chicken stock. Stir it through and add the chunks of brie, a little at a time stirring through each addition, then add the mozzarella the same way.
Once the 2 cheeses have melted into the soup, take it off the heat and and blitz in a blender or with a stick blender, whichever you have. Blitz until the soup is your desired consistency. If the soup is too thick then add some more water or milk to thin it out.
Season to taste with soy sauce and black pepper. Serve with a lovely dollop of sour cream, or plain yogurt.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Eating [Re: Andy Columbia Md] #200325
08-09-2020 05:01 AM
08-09-2020 05:01 AM
Joined: Jun 2019
Posts: 196
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 196
Garlic Roast Potato soup

Ingredients
2kg roasting potatoes, peeled and cut into similar sizes
2 large onions cut in half, leaving the outlet skin on and the root
1 large bulb garlic
5 tbsp of duck or goose fat
300ml single cream
2tbsp butter
1 litre chicken stock
2 tsp Marmite/Vegemite/Yeast Extract Spread (not necessary, but tastes nice)
Salt and Pepper to taste

Method
Place the potatoes in a pan of salty water and bring to the boil. Reduce to a simmer and cook until the potatoes are nearly falling apart. Drain, give a shake to fluff up the edges and leave to cool. As they cool down, cracks appear in the potatoes. These cracks will allow more oil to be absorbed and create those glorious roasted bits that taste so good.

As they are cooling down, preheat the oven to 200 centigrade and put the fat into a roasting tray. Put the tray in the oven to heat the oil.
Put the onions, cut side down, onto a baking tray and drizzle with oil or duck/goose fat. Wrap the bulb of garlic in foil, but drizzle with a drop of fat before scrunching the foil shut and place on the same tray as the onions. Put the tray on the lower shelf in the oven.
Take the tray of hot fat out of the oven, be careful as it will be incredibly hot. Pour the potatoes into the fat.It will sizzle. Using a spoon and a fork, roll the potatoes into the fat until they are fully coated. Pop the tray on the top shelf in the oven.

They should take about an hour to roast. If they take longer, then they take longer, if it’s less time, then so be it. You want the potatoes to be golden brown and crunchy and ever so inviting.
The onions should be really soft, the petals will be coming apart when you try to pick them up. Wait until they are cool before you do anything though.

When they have cooled a little, pull the cooked onion away from the root and the skin, you might have to cut them but usually they will pull away. Put into a large saucepan. Add the potatoes and any oil left in the pan. Unwrap the foil from around the garlic. Take the garlic out and cut in half. Squeeze the soft garlic paste into the pan with the onions and roasties and add the butter.

Add the marmite into the stock, then pour the stock and cream over the contents of the pan. Leave to soak in for at least 3 hour, or overnight. This will allow the flavours of the vegetables to flavour the stock and cream.
After waiting for however long you chose, blitz until your desired consistency. If you are learning to eat solid foods, keep back a couple of the roast potatoes but cut them into chunks. Add them into the soup after you've blitzed it. If you need the soup to be a thinner consistency just add more cream or milk.

To serve, place either a lump of soft cheese or a soft boiled egg (out of it's shell) in the bottom of your bowl, pour the warm soup over the top.

When you get a little bit more experienced with solid food, this soup works ever so well with pieces of cooked sausage or chunks of ham mixed through it after blitzing.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
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