Hi, Y'all.
I'm new to the group...we've been fighting a squamous cell cancer at the base of my tongue since June '07. I've done 3 real chemo sessions (1 treatment every third week) and am doing TOMO radiation right now (M-F for seven weeks)with a once a week dose of Erbetux (sp).
Getting food into me has become a pain, so this past week we had a PEG installed and I am now using it in the evenings and trying to eat soup or soft veggies during the day.
I can't get rid of the salt taste right now so anythig going into my mouth just tastes like sea water....this sucks for a BBQ judge
I can see there is a ton of information here and will try to read as much as I can and IF I can pass on anything I learn, I sure will.
Best wishes to all,
Gary

Gary -- Welcome to the group. I share your BOT diagnosis, but completed treatment in mid-July. So far, I am cancer free, though had a little scare recently with a PET scan lighting up on some neck nodes, which the doctor thinks is nothing.

Not familiar with TOMO radiation -- I had IMRT for 39 sessions, and had Cisplatin weekly with no Erbitux.

I strongly suggest using baking soda, salt and warm water to rinse mouth out several times per day. I know you already have a salty taste, but this works for some reason. At least it did for me. Also try the Biotene products (mouthwash, toothpaste, moistening liquid/gel), which help both with taste and dry mouth.

Read the "Read this First" post and put your diagnosis details in your signature. That way, folks with experience with your particular flavor of cancer can help.

This is a great site, so use the Search links and keep coming back!!

Hi Gary and welcome
you are the second person this week to post about a salty taste in their mouth.I had never heard of that side effect before.Hope you find all the answers you need this is a great place to learn and get support.

good luck
love Liz

Hello, Gary: Welcome to OCF! Keep us posted as to your progress, and GOOD LUCK!

Lois & Buzz in NC

Hi, Gary- you are a BBQ judge from east Tennessee? I am issueing you a challange as soon as that salt taste goes away to come and eat our southeastern Arkansas BBQ .Glad to know you have a peg to help you through this. Keep swallowing and keep your weight up via peg as you need to. Best luck going forward. Amy in the Ozarks

Gary,

Welcome ....You will find this site a great source of information and support. I had cancer of the lateral tongue and didn'y do chemo or rad so I can't answer alot of those questions. I did lose my one salivary gland and I can say that Biotene is a GREAT product though !!

A large part of dealing and making it through is attitude ..But you seem to have a good spirit about you .

As far as you and Amy go with the southern BBQ's I have some friends here in Upstate NY opening a "roadhouse" ( bbq) in Dec so If you all have any good recipes or menu suggestions let me know!! Cus I am sure we don't do it like the south does !

Shar

You have BBQ in SE Arkansas.... {{ducking}}

I didn't know what BBQ was until I moved here to Memphis....


Now that oughta start something


The good news is that I actually got some ribs down 2 weeks ago. Granted they were wet ribs, but my god they were good.

Uh, excuse me, but my vote is for good ole North Carolina barbeque...vinegar based...um, um! Ok, emmylou (Lois and Buzz)...back me up! :p

Kevin, the Memphis folks learned how to cook bbq from their Arkansas grandmothers And I recently saw a couple of shows where the New York folks imported some Southerners to teach them how to do bbq. When I have time, I'll post some sauces. Meanwhile- good eating- everyone. Amy in the Ozarks

lol....'tis TRUE, Deb! is there really any TRUE BBQ outside of NC?

This BBQ thing is quite interesting. Reminds me of when I moved to Virginia Beach after spending my first 28 years in the backwoods of Maine. BBQ in Maine is a grill, some charcoal briquets, fluid to soak the briquets in to ignite them..........and then we cook steaks, chicken, et. and usually have corn on the cob and beans with it all. Bread and butter on the side of course. So, I met my husband while here and he invited me to his house for one of our first dates to have some BBQ. I spent my entire day looking forward to a nice juicy steak and some fresh, in season corn on the cob. Imagine my surprise when he handed me a hamburger roll with this GOOP in the middle of it and some coleslaw on the side! I still, to this day, have NEVER eaten BBQ and don't plan to. I fix it for my husband at least once a week, after all, he IS a true southerner. Poor guy.

Minnie, the question is ---are you fixing him BBQ or GOOP Amy inBBQland

Minnie

LOL LOL LOL... I too grew up in New England and now I am in NY and My Idea of a BBQ is the same as yours !!!!!!! And my friends who are opening the restraunt ,I have been to their house for "our kind of bbq" So I am curious to see if that can pull off the Southern BBQ thing !!!


I do hear it is GOOD though ~~


Shar

Ok and while we are on the subject of BBQ ..I have a question , as you all know my idea of BBq isn't like yours .

What is difference between WET & DRY RIBS ??

sharlee asked:"What is difference between WET & DRY RIBS ??"

WET = LOTS of BBQ sauce, the more the better (enough so you have to take a bath after eating)

DRY = Is a dry seasoning rub applied to the meat before and after cooking.

I actually prefer the original dry Memphis style, but at this point, Ribs is Ribs

sorry GaryG, I didn't mean to hijack you post but as a BBQ judge, I'm sure you're gettin a kick out this!

Kevin

All my conversations wind up on food anyway
Being a BornAgain Texan (moved there as soon as I could) Texas BBQ is by far my favorite...but that being said...I've had some REALLY fine BBQ in alot of different regions all with their own special twist...and enjoy them. And please don't start me on chili or Tex-Mex...no salsa, no jalapeno's AAAARRRGGGGHHHH. But I had a lovely cup of beef broth this morning

Gary

I am from SE Louisiana and I miss a really good Cochon de Lait (that's KOshoun de lay for all you non-cajun folks)

aka - young pig roast, done in a pit

Gary

sorry we have hijakced your post .. However it does seeem you are IN GOOD SPirits... That is a good thing !!! Who knows maybe we all can get together and come up with recipies of things we can EAT during these treatments and surgeries !!

One major fallback I can think of is the lack of taste some of us go through ..BUT hey we can work on that !!


Shar

I really believe that attitude is very important and I'm trying to keep mine as positive as I can. And I can't wait to get my taste back....all I do now is watch food shows, read cook books and plot weekend food excursions for when this is over

Well, I'm hijacking again because Kevin's Cochon de Lait has my mouth watering big time. BTW, Cajun cooks are among the best in the world. To further Kevin's explanination of wet vs dry: Dry rubs are a combination of spices [garlic, chili powder,salt, red and black pepper,turmeric, etc. to taste] that are rubbed into the meat before cooking or grilling and can be left to meld in the frig overnight].Alot of Texas BBQ is dry BBQ. Sometimes a BBQ sauce is served on the side with dry rubs- sometimes not. Wet BBQ is sometimes marinated before cooking, but always cooked and basted with whatever your favorite concoction of sauce is.[and there are thousands of variations]. One of the few meats my husband could swallow [with no teeth] after surgery and radiation were pork baby back ribs, slow cooked [oven] in a mild sauce. So as Not to belabor this point here, anyone who wants some different BBQ sauces-e-mail me- I have a bunch of them. P.S. There are different techniques and sauces for pork and beef. Amy in the Ozarks

As long as you are providing explanations, what is Cochon de Lait?

All this BBQ talk is making my mouth water. Amy, I'd love to get your BBQ sauce recipes. Every day is an adventure in figuring out what Dan can or can't eat. We haven't tried ribs yet.

Margaret
Cochon is Pig in french.
i.e. a young (suckling) pig, hence the milk reference. See Kevins answer from Oct 18th.

Bon App

Amy,
Funny you mention that about John and the ribs. You and I talked about BBQ in the past (remember the new smoker the kids got me last year, well I fianlly got it together this spring and got to enjoy it!!). I was really worried about ribs, because most meats are still a challenge, but the ribs, if done correctly have enough fat in them to make them "smooth & easy" going down. I'm able to handle some spice at this point as well so while the taste is still limited it's a high light!! It's great to have some experts aboard, maybe we will learn some tips and tricks.
So I agree, enjoy that Piggy!! Pork fat rules for sure!!!
Steve

Steve,
Get that smoker at around 225* and take a nice pork butt at room temp....give it a little rub with some yellow mustard and then a nice sprinkle of salt, garlic powder, and black pepper. Put it on the smoker with a fist sized piece of wet apple wood and let it work for about 12 hours or so (keep it moist with some apple juice and water). THEN...lay it on some heavy foil...give it a nice squirt of parkay, then wrap it up...and then wrap it again. Now put it in an empty cooler and put a blanket on it and close the lid.
Go fix everything else you want for the meal..in two hours take the Butt out and either slice it or take two forks and shred it...serve with some sauce on the side. Garunteed to make you jump up and down

This thread about the BBQ works almost as good as my saligen

You people are cracking me up!
I thought the best ribs were from the Longhorn Steakhouse!

OK, this is weird:

Yesterday afternoon, FEDEX rings my door and places a rather large box on the porch. I open it to find manna from heaven: North Carolina pork BBQ, collard greens, black eyed peas, hushpuppies, and squash from the OINK EXPRESS! Seem that Bill's brother, upon hearing that Bill is trying to eat by mouth now, decided to tempt him with food that he dearly loves. OINK EXPRESS is a mail order system with King's Barbeque...an institution in Kinston, NC for 60 years, very near the NC coast where Bill grew up.

It worked...Bill was able to eat some of his beloved food tonight..only three weeks from his last treatment.

So, everyone keep talking BBQ...you may have a ring at your door!

Deb

P.S. If you are interested, 1-800-332-OINK or kingsbbq.com

oh, Deb! All this talk of good 'ole NC BBQ (and other 'posers', lol..and poor Buzz can't eat a thing (and I REFUSE to eat ANYTHING in his presence)! It's all I've thought about for TWO days, and NOW, you get a special delivery from KING'S!
...SO glad that at least the two of you are in 'HOG HEAVEN'!

Lois & Buzz in NC

Yep, can you believe it Lois...what a treat!

As far as you eating in front of Buzz...let me give you my thoughts. You have a job - caregiver - and that requires keeping your health optimal. If you need to eat...eat. Buzz will understand and if like Bill, really didn't desire or crave much food at this point in his treatment. Caregivers have a lot of stress without having to tiptoe around to have a meal and truth be known, Buzz is probably feeling guilty enough without adding this to it so...EAT young lady and look toward Thanksgiving and a more normal Buzz.

Oh, and last night was a pork celebration - football, beer, and BBQ! Less the beer for Bill.

Oinkingly yours, Deb

Lois,
I agree with Deb.... eat!
At least as far as I was concerned this was never an issue for me. Should you go out, there are always soups, mashed potatoes, meatloaf and dessert.... tiramisu, creme brule (sorry no accents) or custard.

M

Deb

Can I just say HOW IRONIC !!!!!! Weird how things happen huh ? HMMMMM what else can we discuss ..what do I want to show up on my doorstep . hahahaaha. Maybe some one to cook for me !!!!

ANd Lois you do need to eat , I know after my surgery everyone here was eating and I could have cared less. I had 6 people eating constantly all kinds of things and in the begining I really didnt care. Once I was able to eat a bit and started so I could chew I def "craved" things but knew I could get to that point and if not OH well . Even still I can now eat most anything really ..taste everything ..that is another story !!


Shar

I never ate in front of Robin.Somehow it seemed a cruel thing to do,as he never lost the desire for food,just the ability to eat.

I understand Lois and i expect like me you get what you can when he is not about.i became a closet eater lol.