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#147175 03-15-2012 09:49 PM
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Hi all. Currently finishing up my 4th week of IMRT and feeling really alone and discouraged. Though the sores in my mouth and on my tongue have only lasted about 2 weeks and started to heal and I'm no longer in pain my taste is completely diminished.

I went into this weighing a healthy 150lbs at 5'7" and lost about 10 lbs due to 3 surgeries, regained about 5 back and am now down to about 130 because the only thing I can stand to eat is oatmeal.

I'm wondering if the sores are going to come back again? I don't want a feeding tube and I'm going to try ScandiShake which has 600 calories because it seems one of the few things I can taste (somewhat) is chocolate along with coffee and milk. Things like carnation instant breakfast and ensure are so thick they make me cringe and make my saliva "ropey" and unmanagable.
I'm also feeling very depressed about this whole lack of taste thing. I assume I'm not the only who loves food. Eating without taste leaves only texture which makes me nauseous and I might as well be chewing on cardboard. I just can't do it. It's miserable. I'm always hungry and trying to find ways to take in calories through liquids. I frequently try foods and am very disheartened when I taste nothing. I'm afraid I'm going to diminish to nothing and live miserably until things go back to normal - when will they go back to normal???

I feel as if my boyfriend - though I know he's trying to be supportive doesn't even come close to understanding what I'm going through. Apparently he thinks tough love will get me to eat or that time when he was little and sick and couldn't taste food for 3 days compares to what I'm going through. I'm scared I'm not going to get my taste back and that food will never be the same again. Sorry if this was all over the place and confusing but I have had nobody to talk to this entire time and just found this message board. Please help. :-/


Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
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
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
MissBazinet #147176 03-15-2012 09:58 PM
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Welcome to OCF! Now that you have found this site, you are no longer alone! You are now among others who understand what you are going thru and will help with advice or just to lean a shoulder to cry on. Dont worry, we will be here for you! Its kinda like our own little private club that nobody else quite gets except other patients and caregivers. Oral cancer is so much harder than other ones because it affects such basic functions like eating, talking, kissing, drinking, etc.

About your mouth sores. Unfortunately radiation continues working even after you finish the treatments. How many tx do you have? Try rinsing your mouth with 16 oz warm water, 2 tsp baking soda and 2 tsp salt. Do this at least 4 times per day. Swish for up to 30 seconds and spit it out. If the salt burns your mouth, cut it down to 1 tsp or omit it completely. Salt helps to heal so its preferable to have in in the mix.

Now is NOT the time for weight loss. Most doctors recommend to not lose any weight at all even if someone is overweight when starting out. It means your body is fighting and burning up way too many calories. This will quickly weaken you and if you dont get enough nutrition and hydration it can lead to major problems. The end result being hospitalized. Push yourself to get a minimum of 2500 calories per day and 48 oz of water, do this EVERY single day. Dont think that its ok to make it up the next one, that will lead to a cycle of playing catch up and will be detrimental. Even more calories up to 3500 is ok! Adding some high protein powder will help speed your healing capabilities.

I know its a long road. Hang in there, Im with you every step 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
ChristineB #147177 03-15-2012 10:21 PM
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Posts: 58
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Thanks Christine. I have been doing the mouth rinse you mentioned as well as wearing my fluoride trays during treatment. I have 11 more treatments left if you count tomorrow (Friday). 30 total. I'm really doing my best as far as calorie intake but it has been a struggle. Nothing is appetizing and I just don't want to eat anything I can't remotely taste. It's hard to swallow and makes me want to throw up. I realize this probably sounds juvenile and I should really just get over it but...my attempts so far have been futile.

Marie


Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
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
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
MissBazinet #147179 03-15-2012 10:33 PM
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Water down the thick nutrition drinks. I drank alot of yoo-hoo. But I also had a feeding tube to use for the formula. I lost 65 pounds and almost 4 years later I still havent put any back on. Eat, even if you have to force yourself! You do NOT want to end up hospitalized for malnutrition and/or dehydration. I know how horrible it feels, it happened to me. I felt so sick I really thought that I was beginning to die. Your taste will be gone for probably 6+ more weeks. It will return but it takes time. Please let me know what you need help with and I will make suggestions for you. I know how hard this is but you can do it!!!!! If I can do it being the biggest wimp out there then you can too smile

PS... If it gets too hard to get your nutrition in you may end up with a feeding tube. They do have nasal tubes which are very easy and more temporary than having one surgically implanted.

Last edited by ChristineB; 03-15-2012 10:34 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
ChristineB #147188 03-16-2012 04:34 AM
Joined: Aug 2011
Posts: 78
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You poor thing!! You can and will get through this. Try watering down the shakes like Christine suggested. I also completely agree with you on the Skandishakes. They definitely taste better & you have control of the consistency.
Ask the nurses at your facility if they are able to give you a mouth irrigation. I had one everyday. Admittedly, when things were at their worst- it didn't do as much good- but it sure felt great to get that junk out!!! Drinking water, the salt & baking soda rinses, and frequent brushing & gargling also helped.
I am two months out from 6 weeks of IMRT. Please believe you when I tell you there is sun beyond the clouds.
You will persever & get through.
Take good care!!!


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
MissBazinet #147192 03-16-2012 09:03 AM
Joined: Oct 2011
Posts: 805
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You are no longer alone. We have found amazing support on these forums. Stay here and vent when you need to. We ALL understand, have been there or are there now.
It's not being juvenile, it's being real. But, you have to force yourself or get the PEG. Nutrition is a MUST or, like Christine said, you'll end up hospitalized!
Hang in there. Many people who have not been through this do NOT understand. How could they? Did you before it happened to you? We sure didn't. We had sympathy when people said they had cancer. Now we have empathy. We GET it! It SUCKS!!! Try to be patient and explain how you feel to him. Have him read some of these forums.
Hang on and keep talking to us!!
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
KP5 #147195 03-16-2012 10:01 AM
Joined: Dec 2010
Posts: 5,260
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Hey there .. I was where you are almost a year ago, I actually started rads march 18 2011. Had the same surgery except they rebuilt my tongue on the left side. I hear you on the taste we've all been there.my chocolate didn't go away either.. smile I could taste strawberry a bit too. I lived on ensure for about 3-4 weeks near the end, (week 5/6 and two weeks after...) I would pop a pain pill then rinse with magic mouthwash then when both were working, I'd chug my ensure (I had it down to 13 gulps!) clean my mouth and pass out! wink this was only for the week following treatment up to that I didn't really need the pain meds (oxy didn't dull the pain just made me sleepy!). I downed about 4-5 ensure a day (extra calorie) and added a protein powder to one of my drinks daily. I got through it without using the peg I had one but wasnt able to keep peg feedings down, so it is doable, you just have to push through it. I lost 20 lbs total. I found a water pik to be great for keeping my mouth clean and getting rid of the ropey saliva. I used it on the lowest setting and mixed Luke warm water with a bit of organic, alcohol free mouthwash.it made me feel fresher. Welcome, and sorry you have to be here but glad you found us. Good luck!

Last edited by Cheryld; 03-16-2012 10:03 AM.

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
Cheryld #147232 03-17-2012 01:38 AM
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Wow. Thank you all SO much for the advice and encouragement. I wish I had found this sooner. Life was pretty lonely after surgeries too. But better late than never:) My boyfriends mom was able order me some benecalorie so that should help with what I am am able to eat and I Switched to whole milk and bought some scandishake. I realize everyone is different but I was just wondering about how long it took for your taste to come back Cheryl? And just your overall experience with this? I am so, so scared it is going to take a long time and/or never come back:-/ Thanks again everyone<3

Marie


Female, 37 yrs old,Non-Smoker/Social Drinker, HPV-
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
Fall 2014 - HBOT due to wisdom teeth extraction post radiation
MissBazinet #147233 03-17-2012 02:12 AM
Joined: Jan 2009
Posts: 1,844
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Hi Marie!

Welcome to OCF, glad you found us sorry you had to.

I think I had my taste back for all but peppery acidic foods back within a few months. Took me over a year to do pepper again...still not a big fan of it anymore where I loved spicy before.

glad to have you aboard!

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 #147237 03-17-2012 06:28 AM
Joined: Nov 2009
Posts: 493
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My taste is still not the same as it used to be, but I can taste most things. Many things also don't taste as good as they used to. Coffee was one of the first things that came back, and I love coffee, so I was very glad of that. I don't do well with spicy foods, either. They sort of irritate my mouth. You have found one of the greatest groups of people in the world. We are all here for you! God bless.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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