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#57029 10-08-2005 08:20 AM
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Nelie Offline OP
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We don't have Trader Joe's here but our local Wegman's carries some boxed soups like that. Actually, their boxed portobello mushroom soup was the last thing I was able to get down during treatment--I was still eating it and finding it tasted good on week 4 of treatment. I'm going to go there today and get some. I actually have a great recipe for cream of onion and garlic soup and maybe I wilol make some of that. It makes the whole house msell good as the onions and garlic roast and then at the end it is all pureed together.

A friend of mine who's husband has advanced MS and some swallowing issues told me that there are actually different muscles in your throat involved in swallowing liquids and in swallowing solids. I kept swallowing enough through treatment that its obvious my swallowing is working OK for liquids, but I guess I'm just worried I've somehow lost the muscle control for solids. Has anyone else had this same problem? Should I be asking now to be referred to a swallowing specialist? My next appt. with the ENT actually isn't for a month and I don't want to bug him if this is probably an ability I'll recover on my own just through continuing to try, but I also do want to be proactive about this.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57030 10-08-2005 10:55 AM
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Nelie,
In my humble opinion,it seems like a good idea to step up the appointment, can't hurt to ask. At the very least, he will tell you whether it is something to worry about, and at the most, he will refer you for a swallowing eval. That ain't a bad thing.

Andrea


SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
#57031 10-08-2005 02:25 PM
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JAM Offline
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Nelie, will you please share [or e-mail] me your cream of onion and garlic soup? I think John would like it-we are still looking for diferent things he can eat. I'm gonna try Gail's spinich soup this week. Keep at it Nelie, you are having a tough time, but believe it will get better. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#57032 10-08-2005 03:01 PM
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Nelie Offline OP
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Amy, Soup recipe:

1. Chop 6 large onions into @ 1/2 inch slices and peel the cloves from 2 heads of garlic. Bake these together in a roasting pan at 350 for 1 and 1/2 hrs with 3 cups chicken stock. Season with salt, pepper, thyme and whatever else you think sounds good. Cover roasting pan w/foil.

2. Pure contents of pan in blender adding 2 more cups of stock and 2 cups of heavy cream. Pour soup into saucepan and heat--but not to boil.

That's it! I got it from "The New Basics" cookbook. Its one of their less complicated recipes.

Thanks for the encouragement. Today I finished the onion soup.Tommorrow I'm going to make this.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57033 10-08-2005 03:23 PM
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Thanks Nelie. It sounds yummy AND I know it will keep the vampires at bay laugh Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#57034 10-13-2005 12:14 AM
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Nelie Offline OP
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well, I made the cream of onion and garlic soup and making ti was fun--it's really thr first cooking I've done since I stopped eating and just interacting with real food is nice.

BUT I had problems eating it! Even though the onion and garlic are pureed there are small bits in the soup and they stick everywhere--especially the roof of my mouth and make swallowing hard--and the only way to clean my mouth after seems to be to stick my finger up there and swab it around--the roof of my mouth is so completely dry otherwise and using my tingue doesn't work--I can't feel where it's going enough.

I think I probably need to get a swallowing evaluation. Sigh. Yesterday was the dry run for my breast rad and today is the official first day, I was hoping this eating stuff would be improving by now and help cheer me up as I face another 6.5 weeks of rad to another body part (but this one will be SOOO much easier--a walk in the park comapred to the other I think).....

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#57035 10-13-2005 02:50 AM
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Nelie:
Thanks so much for all your helpful posts...Your bravery is inspiring!
To you and all folks getting off the tube - my Dad had his barium swallow this week, and has the go ahead to resume whole food - they also indicated he can come off the tube - He had a bit of bacon, eggs, toast, and coffee for breakfast yesterday, and continues with the cans of liquid nutrition he was taking via tube as well smile
My questions are these: He's concerned about numbness and tingling in his tongue and near the site of his surgery (L tonsil area) -- is that something that will go away? He doesn't appear to have problems swallowing - are there foods he should really avoid completely?

Thanks for all your help and support - my best to you all...


Best,
Alex
#57036 10-13-2005 03:23 AM
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Hi Alex,
As most folks here will tell you, the foods he may want to avoid include those with a lot of acid or pepper "bite" to them, as it will make his tongue sting. He will want to experiment with old favorites like tomato sauces and lemon/pepper sauces to see if he will tolerate them or if they are too much for his tongue to take. I personally would avoid any foods which, in the past, have given him indigestion or a lot of gas. In other words, it's a very personalized thing, but he will let you know what he wants and likes.
Glad he has progressed to a point where this has become an issue!

Live well,
Andrea


SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
#57037 10-13-2005 07:14 AM
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Nelie-
Good Luck with the RAD. I woul expect that you are a trooper now with all of treatments for the Oral Cancer. Hopefully you will breeze throught it.

On the eating note-when my Mom first was diagnosed I bought her an online cook book for oral cancer/surgery patients. It had a lot of recipes that were supposed to be appropriate and tasty. If you are interested in it, maybe she (my Mom) can email you the file. Let me know or email her directly. User name Tami's Mom.
Let us know how you are doing with the Radiation
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
#57038 10-13-2005 02:09 PM
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Nelie,
the things you write about eating in your post make me feel like I am reading about me. Only I do not like onion soup but your description of how food sticks to your teeth and all over your mouth sound so familiar. I had this happen during treatment when I tried to eat some good home cooked food. And after treatment ended and I would try to eat.

I have been eating soup for lunch along with a bottle of ensure and sometimes will eat a can of carrots plus some equate for dinner. After each time I have brushed my teeth, gums and tongue with the biotene toothpaste. It has gotten a lot better.

I still am also swishing with the salt and soda and still use the magic mouthwash now about every other day. The swallowing specialist told me to drink apple juice that it would not burn. When I first tried this it did. About a week ago I tried it and it just made my mouth want to kind of turn inside out and make my mouth feel funny. Today I actually could taste the apples and it didn't make my mouth feel funny!!

Now for my news and I hope that it gives you more hope. I saw my ENT yesterday and I had asked about him taking my PEG tube out and he said he could. I was scared but felt that if I lived through getting drains out from the neck dissection that the tube removal wouldn't be so bad. When he looked at it he said well good you have one that has a balloon at the end this will be easy.

He got out a syringe and tried to pull air out? He said it wasn't doing what it was suppost to he only got a little. He went to check to see what resistance he would get and it came right out!!! I didn't feel it at all. I feel so much better.

I just keep pushing myself talling myslf if others could do it then I could. I was ready to get it out. It was starting to hurt anyway.

Just keep on trying with easy foods. I also found out that my tongue is very sensitive so I am being careful about what I put in my mouth. Any thing with the tinyest spices makes my tongue feel like I just ate a jalapena pepper!!

I did finally eat some ice cream the other day. Not as much as I use to but was able to get one scoop down. Just need to conditon ourselves to eating again.

I hope that things with your eating improve and that your treatments go well. I continue to keep you in my thoughts and prayers.

Take Care
Love
Terry


Terry | 42 female| base of tongue w/swollen lymph nodes | Dx'd-Feb 05 | Stage IVA T2N2M0 | radiation/chemo 8 weeks finished 3rd week May/05 | bilateral neck dissection 9/2/05 45 nodes all neg.
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