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#149832 05-21-2012 09:38 AM
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Just want to vent a bit. I completed my treatments 3 years ago this coming August. I am basically doing well, and have it so much better than some of you guys do. So far, I remain cancer free. Went to a pot luck yesterday for our bell choir at a beautiful log cabin in the woods. There was wonderful food there...all kinds of salads, desserts, and other side dishes. I could eat a couple of bites of potatoes, a bite or two of pasta salad, some applesauce, part of a brat, and spoonful of dessert. I am sort of depressed at being so far out of treatment and still not being to eat normally. Part of it is because of the mess my teeth are in, and part of it is due to dry mouth. I know that I shouldn't whine about it, but I felt stupid sitting there with little spoonfuls on my plate, and this is the only place I could come where people might understand. Sorry for venting, and I know that I should just suck it up but while I am OK most of the time, it
does get me down sometimes.


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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Hey, Vent away. In some ways I have it easier not being able to eat or drink at all. This thread on depression is worth reading again IMO -if only for my song parodies wink
Depression
Seriously, the impact of not being able to participate fully in the social ritual of "breaking bread" is not appreciated by those who can. We do understand how much this sucks
Keep the Faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Thanks, Charm, you always help us keep things in perspective.


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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Venting in a safe environment, for whatever the reason, is an important part of healing. Think about how awful it is when we keep our fears and worries bottled up inside. Not venting is psychological self-mutilation.

We all have expectations of where one should be following the OC experience. But we also know that there isn't one way. Four years out and my husband still deals with many issues, eating being a BIG one. I completely understand your sadness. So many social situations are centered around a meal. I encourage my husband to attend gatherings but I don't push it. He is reluctant to eat in front of others--it is a messy and slow process.

And remember, that other people who are not familiar with OC, have ridiculously high expectations, too. "Gosh, I though he'd be over that by now." How many of us have heard that one?

I love this forum. It is safe, friendly, and supportive. And there are no limits to that. We get you!

Take care-
Anita

Last edited by AnitaFrances; 05-21-2012 11:18 AM.

Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
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Sorry you didnt do better with eating at the pot luck dinner. I know it can be very frustrating not to immediately bounce back to how you used to be, even a year later. Sometimes you just have to take a deep breath and realize how far you have come. You still will notice more improvements during the next year and the more practice you have eating, the easier it will become. I know its difficult but you really will get there and at next years pot luck, you will be doing so much better!


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
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Vent away...it's very freeing!! ;o)
The real world doesn't understand, but we sure all do. We are only 7 months out, so we still expect to be having issues, but then again, we don't, ya know? You just want your life back but that's not reality. The reality sucks! But...we have each other and that helps soooo much!
Hang in there and thanks for venting. I think it helps everyone else too, when one of us lets loose!! =)
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 #149867 05-21-2012 07:07 PM
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This is really the only place I can come where people understand. Anita, I totally identify with your husband about not liking to eat in front of people. As you said, those not familiar with OC do think that I should be "over it by now". Christine, you have been through so much more than I have and you and those who have had recurrences are my heroes. Thanks for letting me vent. You guys are the best!


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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You really will get even better than you are now. It just takes such a darn long time! This site is a place where its ok to vent, we all understand!!!


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
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We're here and all have been there on some level. It was my birthday weekend, and I made some great vegetarian food, but could only have a little as some of it was quite acidic and upset my tongues- but being a veg head this doesn't upset me as much as most because Im used to having to pick my way through my dinner... Hugs it will improve!


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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VENTING ALLOWED AND EVEN ENCOURAGED ON THIS SITE


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Spicy tidbit's are my husband's downfall at parties - red pepper in particular. Even the deviled eggs were inedible at the last party we attended. And the fried chicken was too dry. Very frustrating!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #149892 05-22-2012 02:24 PM
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I have trouble with spicy food, too. Chicken is awfully dry for me, as well. I think that it's the texture that gives me trouble. I also eat so doggone slow, and sometimes it gets cold by the time I finish. I have been buying Bob Evans frozen sausage, egg and cheese burritos-they aren't very spicy, and I get little packages of guacamole and put on them. I can also eat chicken wings if they aren't breaded as long as they are the "mild" variety. Maria, I see you are in Ohio, do you have "Frickers" near you? I can eat the shrimp there as long as it is the "mild" kind.


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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Try using a pressure cooker when making meats. It will give you moister meats which should be easier to eat. Also dark meat with chicken and turkey are alot easier.


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
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Hum, never thought of a pressure cooker - sounds like it would work, though.

We have been playing with mexican foods - turns out that I can do salsas and so on, replacing hot peppers with cubanelles or red bell peppers and it tastes good to my husband and to me. It's a pain in the you know what to make them, but I was thrilled my husband enjoyed them. The general approach is as follows:

Find a salsa recipe that looks good
Replace the hot peppers with bell (color of your choice), ancient red, or cubenelle pepper.
Roast or grill the peppers - get a char so that you can remove the skin and cook the pepper a little.
Roast, grill or microwave the onion so it is less harsh.
Always use fresh lemon or lime juice - less harsh, tastes better.
If too acid, replace some of the lemon or lime with vegetable or chicken broth, and add extra olive oil.

Salsa's can all be blended to make them smooth if desired!

I will look up my enchilada recipe when I get home if you like!


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #149903 05-22-2012 04:58 PM
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There is a Mexican restaurant not far from us that has a seafood enchillada that I can eat with no problem. It has the enchillada gravy which helps, and I also get guacamole on the side. I have been buying the individual packs of guacamole which they sell at Krogers in the produce department. It's called Wholley Guacamole, and it's not too spicy. It also has a fair amount of fiber which is good. If your husband likes seafood, that seems to work well for me if it's not heavily breaded. I can also eat Hebrew National or Nathan's hot dogs, too, and that's something that we can grill. I sure wish that I could have a nice steak, though!


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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Venting has proven to be theraputic, so don't apolpgize for using a healing technique.

I have just come out the tunnel of recurrance, still in ICU, scheduled to move to temp. Care Faciliry, 5-24.
Surgery 5-1, again 5-3 & 5-6.
Each to recover/repair issue of preceeding surgery.
Nothing happens in isilation.

Check in after T.C.F. move.

Paul

Last edited by seattlepaul; 05-22-2012 06:41 PM. Reason: spelling

69yo male, Steam Engineer, Me=4,SCC=0, loving wife, living life as it comes (no other option)
We are all born from Mother, but live and die alone.
Make the best of it, Mommie did all she could, daddy was just a guidance councelor, the rest is ALL up to you.
...and now, 3rd occurance: Surgery 5/1/12
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Hugs Paul! We're thinking of you!


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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Yeah, I love it when you tell people you can't eat much meat or dry stuff anymore and that swallowing works for the most part but is still a hassle and they always seem to say: "it will get better soon I'm sure." They mean well but have no clue how oral issues mess up your day to day existence. Regardless, I'm doing pretty well after one year so I can't complain.


Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.
bbagby #149939 05-23-2012 05:12 PM
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Part of my problem is my teeth are in such bad shape, so the food gets caught in my teeth and sticks, making eating in public not very pleasant. I also look pretty good right now, so people have trouble believing that I still have issues. I can usually manage eating at home, because I can take my time. This cancer certainly sucks, even when you are doing fairly well. On the plus side, I saw both of my oncologists yesterday, and they feel that I am doing well enough that I don't have to go back until November, unless I have some problems in the meantime.


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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Zen did you ever try a really thin sliced rib eye or new york strip? I bought them for Ron and cooked on the grill and he uses Steak Sauce on it to help slide it down, he has NO teeth so he pretty much has to cut it up good and than he sucks it down like a jello shot. You can't cook the steaks very long either or of course will be tough. And baked beans homemade is is MOST favorite thing, I swear he has eaten them everyday for over a month! But he claims he loves them and it works for him and yes I fry up bacon and chop it up and put it in AND it has to be a whole package, he knows if I skip a couple slices too...don't know how but he does. And no he will not eat in public ever. He sometimes will gag and have to spit the food back out and he will say to me "wanna go out to eat with me" and I told him it's OK it don't bother me at all as long as you are eating I don't care how you get it down. Other folks would think he was choking(as I did in the beginning) but he isn't. Now they are just normal sounds he makes when eating.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
SUEZ #149997 05-25-2012 11:39 AM
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No. I haven't tried that. I have had chipped ham and thinly sliced salami. I have actually eaten a small piece of pizza as long as the crust is fairly thin. I know. Eating in public is no fun. My husband is very patient and lets me take my time, but if I go with anybody else I feel as if I am holding them up. Unfortunately, I have never liked baked beans, otherwise I am sure that those would work. I had lunch at our local coffee shop today, and they had Italian wedding soup, and I thought that would work, but the meatballs and spinach stuck to my teeth, so I finally gave up. Some days are beter than others, I guess that I just need to keep trying different things.


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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"My husband is very patient and lets me take my time, but if I go with anybody else I feel as if I am holding them up. "

Okay, I think you need to do the Scarlett O'Hara at the barbeque trick (remember, back in the day 'ladies' didn't chow down in public). Basically, you eat before you go out to eat. Snarf down a protein shake, for example. Then you go out to eat, and have a small portion or appetizer ... you get the pleasure of company and something different to taste without the need to rush. Very French.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Maria #150001 05-25-2012 12:55 PM
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Well, Fiddle Dee Dee! That's a pretty good idea. I usually do just have an appetizer, and most of my friends are used to me bringing my Ensure with me. French onion soup works pretty well, too, as long as I try not to eat much of the cheese. The soup makes the croutons nice and soft and mushy.


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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Hi everyone! I haven't really posted much but read all the time on this site. I can't eat or swallow yet, but hopefully that will change at the end of June. I have a peg tube, but I do cheat with foods. I have found most everything burns my tongue and throat. Does that happen to you all when you try to eat or swallow.


10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
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Ooo Zen buy the stouffers chipped beef! make some toast take off crust if too hard Ron does that and put the chpped beef over it! He loves that too, or make your own if you know how if not and want to know how if you like it let me know!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Hey, Suez, I hadn't thought of that. I should have, though. I make a dip with sour cream, mayo, dill, and chipped beef and I can eat that. I serve it in a rye bread bowl and dip the bread in it. I make it every Christmas, and if I get it really goopy I can even eat the bread.


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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Hey it's okay - probably the sensitivity to the acids etc... It takes a whole of trying and practice and maybe chasing it with something smooth.... Protein shake to sooth it. Good luck


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
Joined: Feb 2015
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Joined: Feb 2015
Posts: 17
Wish I hadn't used my name..I was still in shock. Put the cigarettes down easily..not so the alcohol. Was in AA sobriety for 17 years..but then I picked up. Die or drink? If you haven't had the obsession then it doesn't make sense..I'm trying..or am I dying!?

Just venting..


I am a 65 year old reitired woman. I have been married to a great man for 42 years. I had a right breast masectomy 15 years ago.





squamous cell carcinoma under my tongue was diagnosed earlier this month. I had surgery 2/3/15. 22 lymph nodes out of my neck came back negative for metasis. The Drs. say I do not need chemo or radiation. I'm off the feeding tube and now on a liquid/soft food diet. I see the surgeon again next week. I am grateful and optimistic.
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