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Merri Offline OP
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Hi,
My husband has Tongue based cancer HPV 16. He is in the 2nd week of radiation and Chemo. Our biggest obstacle so far has been getting him to eat enough. So far he just eats shakes, soft foods, and soup. Everything tastes bad to him, and swallowing hurts. Any food ideas?
I tried mashed potatos, mac n cheese to no avail Thank you!
MB


Merri Nanette
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Welcome to OCF! Im glad you have found our group so we can help you both get thru this.

During rads, the sense of taste goes thru major changes. Things get progressively more difficult to eat and swallow. The taste of food changes so much it eventually turns even the most appetizing things into cardboard.

By focusing on what you have within your control to get your husband thru this, you can have a major impact on how easily your husband gets thru rads and recovery. Focus on his intake, and pain management. His intake must be the very most important thing to pay attention to. Every single day for at least the first year post rads he needs to take in a bare minimum of 2500 calories and 48-64 oz of water. Gat a handle on this right away before things become even more difficult for him. Plus, every single day (even if it tastes bad and hurts) he must take a few sips of water several times throughout the day to keep his swallowing muscles actively working. If he is struggling with water intake, ask his doc to write a prescription to get extra hydration a few times a week. It will help him to magically feel better right after he gets a couple bags of fluids. If you can push him to take in 3000 or even 3500 calories its not too much and will only help make everything easier. This must be something he does every single day without skimping as he is only hurting himself. Skimping here and there quickly becomes a bad habit turning it into the norm rather than the exception. Im speaking from experience as Ive done this myself and been admitted to the hospital several times for dehydration and malnutrition. Im hoping you help your husband to avoid the pitfalls I encountered by listening to my advice. Ive nagged many members over the years and found the ones who "know better" end up just like I did... in the hospital absolutely miserable.

After rads, it takes weeks for the patient to feel somewhat human again. His sense of taste takes a long time to bounce back. Most patients will notice small taste improvements that come and go about 3-6 weeks after finishing rads. Recovery is a time that can be frustrating with ups and downs plus a few setbacks too. Enough about that phase, sorry Im getting way too far ahead of myself. When cooking, avoid spices (even salt), anything that takes too long to chew and things that are thick like peanut butter. If he wants peanut butter try putting it in milkshakes to add calories and protein. The following list should help you to find things your husband can eat like canned peaches (these are the easiest, they slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery plus the extra calories helped.


List of Easy to Eat Foods


PS....
Here is a recipe for something I used to make and drink when I went thru treatments. The shake has anywhere from 1200-2000 calories depending on how you make it. The list of foods might help too, they mostly have a smoother texture and arent spicy which should be easier to tolerate.


(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 what works best for you.

As a caregiver, make sure you take time to take care of yourself too. Its not easy watching someone you love go thru difficult treatments. Try to take a break at least once a week so you can do something nice for yourself. Even walking around the block will help you clear your head.

Stop back often, post, vent and read thru others posts. You will see you arent in this alone. Many here have been where you are and with the help of OCF's members, gotten thru all the ups and downs together.

Best wishes with everything!!!




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
Joined: May 2016
Posts: 7
Merri Offline OP
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Hi,
Thank you so much for this valuable advice, and the recipes. Im gonna make that shake! He feels nauseous even though he on anti nausea meds. He tried Zophran, constipated him for days, so switched to Compazine and Akynzeo (a new medication that similar to Emend). We believe its from the chemo (Cisplatnum). He is having a very hard time eating due to the nausea, so I am in a quandary. I make food for him, remind him to eat and drink, but he can only get down so much. He has yogert for breakfast, and Ensure, a milk shake with ice cream, creamed soup, water, Gatorade, but thats about it. Very worrisome, because I know he has to eat!
Thank you for your support. This is the hardest thing we have ever gone through. We are being very positive though in general. ITs hard to see him like this. He is a 57 year old man 6"2' 215 lbs, very strong an active, but this has brought him to his knees.
MB


Merri Nanette
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Have you tried poached eggs? It was something my husband could eat with ease. Has the medical team mentioned a feeding tube? If your husband is losing a lot of weight, that may be the route to go.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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I have no doubt you both are doing the best you can. Ive been thru this myself and know how difficult it is to eat during rads and chemo.

If your husband is not able to eat enough (daily minimum of 2500 calories and 48-64 oz of water) he will begin to lose weight and start feeling worse as time goes on. Patients burn up incredible amounts of calories as their bodies fight the cancer, treatments and continually trying to rebuild itself. Even taking in 4000 or 5000 calories daily during treatment and recovery isnt too much. Losing weight is a sign your husband is not taking in enough. When your husband starts losing weight it will melt right off him several pounds a week. I lost 65 pounds in less than 2 months! I also felt horrible and ended up hospitalized a few times for malnutrition and dehydration.

If your husband is not able to eat and drink enough now, he may want to begin considering getting a feeding tube. Your husband will probably be like most patients and refuse to get a feeding tube. There isnt a single one of us who had one wanted to get one. But it is just another tool to help him get thru the several weeks until he begins to eat enough again. Maybe a nasal type feeding tube would be best as its the most short term type and doesnt require surgery to install.

Heres more about diet for cancer patients...


OCF Main Site... Diet during Cancer treatments

Livestrong's Cancer patients diet info


Hang in there and keep doing your best 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
Joined: May 2016
Posts: 7
Merri Offline OP
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Joined: May 2016
Posts: 7
Hi,
This is all he is able to get down:
Breakfast: Ensure and yogert
Lunch: soup
Snack: protein shake
Dinner: Smooth cream soup
Snack: rice pudding, or some kind of pudding.
Water, as much as possible.

He says food has zero taste, and even tastes awful. Is completely turned off to food. Water even taste horrible to him. Any food he eats he needs water to wash it down. He is only eat liquids, yogert, and soups.

He understands about the feeding tube, his doctor made that very clear. He is 6"2' and 207 lbs, and has 4 weeks more of treatment to go. He has a small spot on his tongue that is shrinking, and a 4 mm lump (lymph node) on his neck, that has shrunken down to a 3. So its obviously working!

He is very nauseous mainly I assume from Chemo. He was taking Zophran and Compazine, but the Zophran made him constipated. So now hes on Compazine and Ativan, also is trying Regaln instead of Compazine.

His doctor told him HPV of tongue is an epidemic among men in their 40's, 50's, and 60's. I hope the new generation get HPV inoculations to prevent this needles suffering.

Ironically my 77 year old Uncle was just diagnosed with Tongue based HPV cancer too.

Thank you all so much!


Merri Nanette
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Hi Meri,

See if you can find any foods with fat content. It has twice the calories as carbs and protein. Peanut butter, anything with oil content. Food with lots of butter. Without any taste there is no joy in eating, so it becomes a job. It does not get easier until a couple weeks after treatment ends, so he just needs to force as many calories down as possible. The doctors can also place a tube to get food directly into him.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Posts: 756
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Have you bought any whey protein (a powder) - it comes in different favors, but I prefer the unflavored. Add a scoop to a smoothie (or other liquids). During treatment I lived on various smoothies - ice cream, yogurt, various fruits, etc.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jun 2016
Posts: 7
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Hi Merri,

I am new to this forum secondary to my father's recent diagnosis of oral cancer. Everyone is very helpful on this site and I hope to provide the same support to others.

I am a speech pathologist for a living. Because I do not know much about your husband's case specifically, I would recommend that he has a speech pathologist as part of his care team. The speech pathologist will look for and treat any signs of dysphagia (difficulty swallowing foods and liquids) and provide exercises to strengthen the oral musculature if necessary.

Sysco makes chocolate and vanilla milkshakes that are a thin to nectar thick liquid. The nectar thick liquid may be easier to swallow. These milkshakes are calorie dense. Again, please consult with your husband's doctors or speech pathologist to know which food and drink textures are safe.


Additionally, please do not give your husband peanut butter unless it is mixed well with a liquid (like a milkshake). Peanut butter is extremely difficult to swallow due to its stickiness. It also takes most people a few swallows to get all the peanut butter down, and this may result in more pain. It is most likely best to stay away from rough food textures as well right now (e.g. graham crackers, hard rolls, etc.)

Best wishes to you and your family.


Julie
- Caregiver for my father, recently diagnosed with cancer near tonsillar region; also on BOT and lymph node near neck
- Certified speech pathologist ready to provide as much help as needed after surgery
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I had a lot of problems eating. I pretty much survived on scrambled eggs with yellow cheddar cheese, cottage cheese with those little containers of peaches and orgain (like ensure but with better quality ingredients). We bought one of those blenders but the shakes, soups, mashing potatoes, mac & cheese all had a consistency I couldn't stand. Don't take it personally if he doesn;t eat something you make. He'll lose some weight but should try to keep it up as much as possible. Ice cream might be okay too. I saw a specialist during treatments who gave me ideas of things to try. She said "ricotta cheese" is such an funny way several times a session. One other thing, tapioca pudding, that worked for me too.

Is he doing swallowing exercises and stretches with his tongue?


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks

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