Finished treatment Aug 28 for base of tongue and 2 left nodes. No surgery, 3 cisplatin concurrent with 35 IMRT. My sweet wife just brought me home a Cheeseburger with ket, onions and pickles. I could taste everything but only on the front part of my tongue and/or only for the first couple of chews of each bite. I'm soooo excited. Is this how it starts or am I just dreaming? Now I want a slice of pizza.

You're lucky. I'm 4 1/2 months out now and everything still tastes horrible. In fact, I've just started eating real food and am weaning off the Ensure after living on it for several months. Beef is especially nasty; chicken is the most tolerable.

it's been 2 years for me and salt and sugar is still gone. I can taste the first bite and then it seems like it always needs more salt or sugar. Then again, I am sure different treatments will give you different results because I didn't start eating solid foods until 6 months after radiation.Good luck and I hope it all returns for ya.

You can taste a "real cheeseburger" omg you are sooooo lucky, i would kiss your wife for bringing that home to you!!! Wow, there is hope after all....i cant wait !!! Oh please let me be one that taste alot sooner, hahaha! And Congrats on completing your treatment. Good Luck to you ( although, hell you can taste, now thats "lucky" )

Linda, I told my wife last night that I wanted to try a slice of pizza and a cheeseburger just to see if I could taste anything. So today she surprised me w/ a Mac D's CB and fries. Fries were OK but that CB was better for the first couple of chews. I still don't plan to give up my Carnation VHC because it's still the easiest way to get 560 cals with nutrition. Also just got 2 more cases today before she brought me the CB and being a CPA I'm CHEAP.

David

Riley and Mary...did either of you have IMRT rad?

Mary, salt is one thing that helps me "taste" better.

Yep. I had IMRT. 7 positions, 2 'zaps' in each position every day for 6 weeks.

this is how taste starts coming back so you're not dreaming and keep experimenting . Jack got salty back about 6 weeks post treatment and about a month later sweets returned. He had the pizza pretty early on, but fries are a problem due to dry mouth. The burgers are moist so that's a good choice. He also tasted Dinty Moore Beef stew early on, cream cheese and omlets.

He's now able to taste everything and tells me he's appreciating it so much more. Today he went to Taco Bell and thought it was great. Don't give up the carnation it's a great way to get calories in. Jack puts chocolate syrup in his nutren and drinks it for the same reason.

Onward and upward,
Regards JoAnne

OK, I just had a small victory due largely to your cheeseburger story, David. I was driving by BK and saw the sign $1 Double Cheeseburger. I thought what the hey. I actually ate half of it!! Couldn't taste anything but the mustard and the texture was kinda dry and crumbly, but I got down. This really is a leap forward.

RileyMc,

Congrats on your little victory

David, IMRT was not an option for me. Doctor said the full treatment was the best since I was pregnant and could not do any other treatments. So I had 70 radiation treatments! I can't believe I lived through that.
Also, I have added and added salt to my foods and now my B/P is going up.
My kids love the iced SWEET SWEET tea I make. LOL
Mary

Riley, I hope your taste starts coming back. Every day I try something different hoping I will taste it. Maybe that might have helped my taste buds? I'm still here waiting for my pizza hint to my dear darling wife. She won't get home till 10 pm but I'll try it if she brings it. I tried Chicken noodle soup today and I could taste everything a little except the darn chicken.

Mary, I had 35 IMRT's and concurrent chemo. I can't imagine 70 rads.

Stoj, I am now able to tolerate cold (just today)so I don't have to drink the VHC's room temp any more which was pretty bad. The cold is much better.

David, the chicken in canned chicken noodle soup doesn't have much taste, so if you want to jazz "canned" soup up, boil a couple of chicken thighs and add them to the soup. Thighs are more tender, juicier and more flavorful than white meat. Better yet, go buy a hen [not a fryer] and make your own soup- you can add carrots, onions, celery, etc. for flavor. Amy

My 2,

I still cant taste choclate, orange (very bitter), ketchup. etc. Still very sensitive to spice as well. Used to love hot sauce cant even look at it now. Red sauce on spaghetti, forget it.

Still dont like eating red meat unless its very rare. Well done meat taste like sand in my mouth. Even with something to wash it down. Very mealy.

I'll tell ya what though, sure am glad I am alive.

Have a great weekend.
-rh

Tom asks me to ask all you tasters what your pain level is when swallowing? It's been five weeks since he completed radiation and chemo. Like most of you report, he can taste the first bites, but it hurts a lot to swallow. He takes a dose of Oxycodone before eating to prepare but it still hurts. I try to convince him that it's just too soon but I'm glad he's trying.

He had some Campbell's beef noodle soup tonight and could taste it. He even chewed and swallowed the bits of beef, but the texture of the noodles was too sticky and he had trouble swallowing them.

David & Riley, we loved the cheeseburger stories! Until this, Tom was Mr. Cheeseburger and really looks forward to the day he can enjoy that again. Good luck with the pizza, David. Tom tried one bite of mine tonight and could taste it, but said it burned like heck-fire going down. Might have been the sauce.

Joyce

Friends,
It took a little while for the taste buds to come back. My problem was that, although the pain was gone, my swallowing function was so debilitated that I just could not swallow much. As the taste buds returned I could taste salty, like chicken soup and I used make chocolate milk shakes every day, which tasted great. Now I can taste most things and my swallowing function has gotten darn good...I love steaks, pizza, seafood, etc. and even eat popcorn, ( anything that is not spicy ) but things like sodas and Gatorade, which I used to love, don't taste sweet anymore. Cokes and Dr. Pepper taste syrupy so I just stick to water.

Good luck,
Danny G.

Tomswife, When was the last time he was scoped? What type of rad did he rec? I finished IMRT 9/28 and I don't have any as in no pain swallowing. I still don't have all my taste back so I am sticking with Carnation VHC because I get the most bang for the swallowing buck but I could and do swallow anything I want. I just don't enjoy that much. He may have an infection or his rad to that area may have been more intense than mine and remember we all can react differently to the same treatment. I would get him scoped just to see what's going on down there.

Tell him it's great to hear and feel that oinion and pickle CRUNCH inyour mouth again especially after watching 1,000,000 cheeseburger commercials on TV while at home during treatments.

But whatever, tell him to hang in there a little longer. Improvements are just around the corner.

Joyce,

Has Tom been to a swallowing/speech therapist? He's just about at the point in time when patients completying treatment are referred for a swallowing evaluation (fluoroscopic test) and then the therapists can suggest exercises to improve swallowng function. They can also ID strictures and ulcers, or other areas that could be causing pain.

If he isn't scheduled yet, ask your doctor about getting one. This is not limited to a major CCC, both of our relatively small local hospitals have swallowing/speech therapists and can give the test.

The exercises really help, even though my husband ate all the way through he was still aspirating thick liquids and had generalized muscle weakness and damage. His swallowing is virtually normal now and has been for some time, but he still does the exercises at least once a day as we were warned that problems can develop later as scarring or fibrosis can occur months post-radiation.

Gail

Thanks for the reminder about the speech/swallowig evaluation. Our RO nurse told us about that and, frankly, it had slipped our minds. I'll call on Monday.

David, Tom had 33 IMRT treatments following a tosilectomy. We do think the surgery has made the healing more of a challenge. He just saw his ENT a week ago who looked around and said he was doing fine.

Thanks for all the advice! I'm so glad to have this community to turn to!

Joyce

Tomswife, I did not require surgery and obviously that can make a big difference in the recovery process. The worst is behind him and it will only get better.

David,

How goes the taste...has it improved since you first posted this?

Tim, I had a slice of pizza the other day. Not the pizza chain I like but beggars can't be choosers. I tasted the meat, pepperoni and tomato sauce but the cheese was a little disappointing. I still don't favor eating over the VHC.

How are you feeling? Have you seen any improvement since our last conversation?

David,

I'm doing OK I guess. I'm 11 days out; I still have quite a bit of throat pain/discomfort when I swallow. I still have a 50 patch on but will drop that to 25 when this one comes off.

I've been eating by mouth the past couple of days and I even manage to get in 1 or 2 VHC everyday. I haven't gained any weight back, but eating is tough when you can't taste it as you know.

The thick mucous has let up a bit but it's still here. My blood chems were checked today and they say I'm fine now. I may get my PEG out at the end of the week. I can't remember did you say you had one? If so for how long?

Thanks for checking/asking

Tim,

The discomfort in my throat lasted about 3 wks for me.

If you want to gain weight you can estimate the number of daily calories you need and use the VHC to get there. To add 1 pound per week you need an extra 550 cals per day per the web site I visited.

When my mucous started to let up, that's when it finally went away altogether. Then comes the dry mouth which ain't that much fun either and lasts alot longer.

I had a down the nose kind for 10 days. It helped me get over the hump, so to speak, and I pulled it out myself.