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Thick Tongue Remedies #198744
07-22-2019 04:27 AM
07-22-2019 04:27 AM
Joined: Jul 2019
Posts: 1
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patm1928 Offline OP
Member
patm1928  Offline OP
Member
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Joined: Jul 2019
Posts: 1
Hello, I am writing for my mom. She is currently awaiting treatment and having difficulty eating/loss of appetite. Her biggest complaint is a thick tongue. Is there anything to provide temporary relief so she can get some food in? When she tries to eat anything (even pureed) she has to push it to the one side of her mouth because it keeps moving over to the "bad side." She's tried putting lidocaine there, but it is very temporary. Sometimes a tums helps; sometimes not. Thank-you for reading and sharing your stories.


Pat McDermitt
Re: Thick Tongue Remedies [Re: patm1928] #198745
07-22-2019 07:03 AM
07-22-2019 07:03 AM
Joined: Oct 2012
Posts: 1,104
Toronto, Canada
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gmcraft Offline

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gmcraft  Offline

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Patient Advocate (1000+ posts)
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Joined: Oct 2012
Posts: 1,104
Toronto, Canada
Welcome to the forum although i’m really sorry that you have to join our circle of friends.

It’s not clear from your post what kind of oral cancer your mom is suffering from. Is it tongue cancer, or is it in the throat? What is her treatment plan? If you could be a bit more specific, there may be members who can give you more specific suggestions.

How long does your mom have to wait before she gets treatment? Have you spoken to a doctor (not necessarily the oncologist, it could be her family doctor) about the problem? On second thought, would she have access to a dietitian who can help?

As you probably know, we are a group of patients and caregivers, we are happy to share our experience but we do not have medical training. We can make suggestions but it’s best to check with your doctor. Off hand, I can think of a nasal tube, which can get some nutrition into the patient. However, not knowing what your mom’s problem, it may not be the best suggestion.


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.
Re: Thick Tongue Remedies [Re: patm1928] #198746
07-22-2019 08:39 AM
07-22-2019 08:39 AM
Joined: Jun 2007
Posts: 10,349
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
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Joined: Jun 2007
Posts: 10,349
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Welcome to OCF! Im very sorry your mother is struggling with her eating! Intake is a major problem for most of us here. Its a very good thing you have found our site to help you both with info and support. I suggest prior to starting whatever treatment she is going to do, you should have a long, open, honest discussion with her doc as well as seeking out a nutritionist or a speech pathologist (ask your moms doc) who may be able to help. Her doc should be fully aware of her eating issues currently and be able to take steps to help her to take in enough on a daily basis. This type of thing can quickly get out of hand and your mom could go thru some very difficult days that could end up with her in the hospital for malnutrition and dehydration... and this is before any treatments! Please call her doc right away today!!!

With your mother starting treatments soon, Im going to assume this means she will be doing radiation treatments??? Has she had any surgeries or is that what shes waiting to begin? Since she's already struggling with her intake, she may find it easier if she drinks her calories with liquid nutritional drinks like ensure or boost? Radiation treatments are cumulative... they become more difficult as the treatments progress. What your mother struggles with now may seem like a walk in the park after doing a few weeks of rads which will negatively impact her ability to swallow, taste, eat and drink.

To be perfectly honest, patients who can not take in enough on a daily basis are prime candidates for feeding tubes. I was horrified when I was first told about needing one but after the initial shock wore off I realized it was just another temporary tool to help get me thru some rough weeks. Nobody likes or wants to depend on a feeding tube but patients who go into rads already having a very hard time with their intake will only increasingly struggle until there is no room for discussion and the feeding tube becomes an emergency surgery to ensure she can take in enough. Its all about the calories so make every swallow count!!! Prior to beginning rads, patients should be eating as much as possible especially all their favorite foods. Going into this with cravings only makes everything so much harder!!! As Gloria mentioned a nasal tube may be all she needs right now. Until you discuss everything with her doc at which point you ask what he recommends, its hard to guess what options will be given to your mom.

If you have read thru posts here, you probably have seem some of my nagging about intake posts. Intake is one of the biggest controllable issues most patients have a hard time with when going thru rads. Every single day oral cancer (OC) patients need to take in at the bare minimum 2500 calories and 48-64 oz of water. This is EVERY SINGLE DAY!!! Patients can not skimp one day promising to do better "tomorrow". This quickly turns into a vicious cycle of playing catch up which never happens and it just keeps going with significant weight lost along with losing muscle as well. That path often lands patients in the ER or being admitted to the hospital for dehydration... which is absolutely no fun at all. The doc can write a prescription for extra hydration fluids to be given a few times a week (usually done in the chemo lab). You will notice a big difference in how your mother feels after getting a couple bags of IV fluids. She will drag herself in and almost instantly feel like a new person thats fully hydrated and feels tremendously better walking out a couple hours later. If you notice your mothers weight is dropping where its visibly melting off her then she needs help from her doc, sooner rather than later. No matter if the patient weighs 150 or 500 lbs, doctors want their patient to have zero weight loss as thats a sure sign they're struggling with intake issues. When a patient can barely eat, getting to 2500 calories per day is very difficult but it can be accomplished and after a couple days of having a better intake your mom will feel better, more like herself. For patients who have radiation treatments starting soon they must turn their low daily calories and water intake around immediately so they can go into whatever treatment they're waiting for as strong as they can possibly be.

As I mentioned in the beginning of this post, Boost makes a very high calorie version of nutritional drink which brings 530 calories per box/can. You may have to ask at a pharmacy, if they dont have it in stock they can order it for you or it can be purchased thru Amazon too. For any Amazon purchases no matter how big or small please always try to go the the Amazon link thats on the right side of any OCF page. We get a small kickback percentage which helps our very small non-profit organization keep running.

Heres a list if easy to eat foods along with several other things that may help your mom. It was created to be a guide to help patients who are trying to relearn how to eat after going thru rads. The foods are less spicy and have a smoother texture which helps patients who have sensitive mouths. The chocolate peanut butter shakes are delicious and very high in calories smile


Cachexia ---- muscle - weight loss during rads

List of Easy to Eat Foods


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. The list of foods above will help too, they mostly have a smoother texture and arent spicy which should be easy for most 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 your own preferences. Ive also recently discovered powdered peanut butter which can be used instead of the usual big jar kind.


Livestrong - losing weight with chemo

Livestrong - Calorie Intake Importance

Diet and Nutrition during treatments


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
Re: Thick Tongue Remedies [Re: ChristineB] #198861
08-12-2019 10:58 AM
08-12-2019 10:58 AM
Joined: Jul 2019
Posts: 5
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Tom In VA Beach VA Offline
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Tom In VA Beach VA  Offline
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Joined: Jul 2019
Posts: 5
i used a list very much like the list in the previous post but as time has progressed, my ability to taste has gone down considerably. I have HPV oral cancer but at present, (week 6 of a 7 week chemo and radiation, I cannot ingest peanut butter ofr chocolate sauce or ice cream. I favor jello, all flavors. one full sugar box is 8 servings of 80 calories, 640 cals total along with 16 grams of protein and then 4 ensure enliven bottles. That's 2000 calories a day and something I can live with. I also take stool softeners and an enema every time 3 days pass without any action there. I know this asked for post treatment but figured no one would mind my adding a note.

Last edited by Tom In VA Beach VA; 08-12-2019 10:59 AM. Reason: misspell

happy thoughts. Laughter is the best medicine. 21 days of watching comedies will make your brain re wire to happy. try it. i can't find my time zone so i took the one with my current time, notrth of virginia

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