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#59577 12-04-2006 02:51 PM
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Just finished treatments last week. Worst part is not being able to eat except thru peg tube (everything taste like cardboard). They are saying like 6 mos to regain my tastes, which means another 6 mos of this stupid tube. Does it really take that long to get taste back? Anything I can do to help stimulate taste buds back to health?


Age 51, Squamous Cell Carcinoma, lymph node on left tonsil, 6 wks chemo - 7 wks radiation, treatments ended 12/1/06 (hopefully)....
#59578 12-04-2006 02:55 PM
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Harley,

Congrats on finishing. I'm four weeks out and my taste buds sort of work, but only for a few minutes before they crap out. Better than nothing...

Anyway, I just mentioned this to my speech path. and she recommended that I try to drink grape juice before and during eating. I've just started, but it seems to help a little.

For what it's worth...

Clint


Age 46; SCC BOT T3N1M0l dx 9/06
Cisplatin x3; radiation x42
Completed tx 10/31; Selective neck dissection 12/06
#59579 12-04-2006 03:13 PM
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Congrats on finishing! Your taste buds will be back to normal on....the day they're back to normal. Not to sound flippant, but they will come back at their own pace. Some folks have returned to normal within a month or so (not many) some have taken over a year.

I'm 10 weeks out of radiation, and I have about 60% of my taste back, for the first 4 or 5 mouthfuls. Ater that, they kind of fade away. I didn't have a PEG, so not only did I deal with the pain of swallowing thoughout radiation, I did it to swallow cardboard. The first time I could actually taste anything was reason to celebrate!

There's really nothing that you can do to speed things up other than keep trying different things, and do it every day. All of a sudden, you'll have that " hey, I can taste..." nirvana.
Good luck!
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#59580 12-04-2006 04:42 PM
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Harleydude,

Are you using the tube because of the taste bud problem or because you can't get food down any other way? Please tell us some more about your diagnosis and what kind of treatment you've had -- that will help people respond whose cases are similar to yours.

If you're using the tube simply because of the bad taste, I would urge you to keep trying to get some of your nutrients by mouth in order to keep your swallowing function going as much as possible. Most of us here have dealt with the temporary loss of taste buds, and it goes with the territory, but eventually they should return to normal. I'm another one who didn't have a PEG at all -- just managed with lots of liquid/semi-soft foods that would slide down with little or no chewing (sometimes had to numb my mouth ahead of time). As Wayne said, there's no way to generalize about how long it will take to get all of the taste buds back, as experiences vary from one person to the next.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#59581 12-04-2006 08:55 PM
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It took well over a year for me to get tastebuds back after radiation. I remember being only able to taste coffee and V8. good luck

#59582 12-05-2006 12:35 AM
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Harleydude;
I would get involved in eating & swallowing as much as you can. The more you do the easier it will get. Also, you might be surpised as you will start to get taste sensations as you progress. I am almost six weeks out from radiation/chemo as of this week and I really get strong taste sensations at this point from salty things when I first start eating. It's a positive thing to get those sensations. I still can't get enough from eating so I'm using tube as well, but it gets better and easier every day. My RO told me to keep challenging myself and I would be surprised how much of the swallowing pain I could break through. (he is correct) Just remember to wash it with plenty of water to offset the lack of saliva.

Best Wishes,

Steve


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

#59583 12-05-2006 01:52 AM
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Harleydude,

I am 4&1/2 months out of tx and the taste buds are still missing for the most part. My docs are careful not to make any promises as to when full taste will return or even if will fully return. The best I can get from them is that it takes 2 to 10 months on average. You need to make minimal use of that PEG. I had mine a total of 3 months and had removed about a month after tx. You need to try and swallow as much as possible to avoid future swallowing problems from lack of use.

Good luck!

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
#59584 12-05-2006 05:51 AM
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Hey Harleydude, Wow, another Houstonian! Do you go to M.D. Anderson? Welcome to this site, this is the best place to get information there is on oral cancer, and the people here really do care! Plus it makes it nice to know that others have gone through the samething you have. I am 2 months out of radiation and can taste most everything, of course some are to spicy for now, but everyday my taste buds get a lil better and better! I just had my tube removed in November, and towards the end, mine started bothering me too, but never had pain in the early stages. Just remember something tho, everyone is different so your taste could return tomarrow who knows, but just have faith that it will return and take your time healing, your body has just gone through something very stressful, relax...everything good will come in time!!! laugh

#59585 12-05-2006 06:38 AM
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Ditto on getting involved with eating and swallowing ASAP and lose the tube if you can.

I'm 6 1/2 months out now and back to eating-but my choices are limited. I'm off the Ensure, Prosure, & Naturade Weight gain after living on it exclusively for nearly 5 months. My energy level is coming back & I'm feeling more 'normal' BUT-I don't eat for the taste. NOTHING tastes good. I eat only for the nutrition. For awhile there, I didn't even experience hunger....I just got weak and faint when I needed food. Now I get really hungry early enough to do something about it.

I'm for doing everything we can as early as we can to recapture the old 'normal' ASAP


dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
#59586 12-05-2006 12:22 PM
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I am 3 months out and I didn't have a Peg. I have been able to eat anything I want, including spicy foods for at least a month now and my taste is improving slowly. I can taste just about everything but it doesn't always last long. I did have a pot pie the other night and I was surprised that I tasted everything the whole meal.

What I dislike more that anything is this %#*& dry mouth. I only have to deal with the taste thing 3 or so times a day but the dry mouth is a 24 hour pain in the BUTT. Everytime I meet with the IRS or a judge or even my clients I have to explain about my dry mouth for fear that they think I'm nervous about something. I need a sign on my forehead. Ugh !


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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