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#43080 03-28-2004 10:07 AM
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One of my favorite passtimes has always been eating and enjoying the taste of things. My radiation oncologist warned me that a few treatments into therapy I would lose my ability to taste. Today after only three treatments under my belt, I had some carboard pie. Coconut cream pie has always been my all time favorite. My youngest daugther is especially adept at making these delicious delights, a southern heritage thing. Last night she baked me a doosey, placed it lovingly in the fridge and informed me, this is yours and yours alone to go with your afternoon coffee.
Alas,,,Cardboard, carboard, cardboard. So Sad....
Darrell


Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
#43081 03-28-2004 10:39 AM
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The good news is that taste for the most part is one thing that does come back after treatment, though I find mine slightly different than I remember things. But the cardboard period is a drag no matter how you slice it. The trick is that in spite of the lack of taste, and for most people at this stage the lack of desire to eat, that patients keep up their nutrition and weight until they get through this.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#43082 03-28-2004 01:44 PM
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A couple of months after treatment, a good friend made a sweet potato pie for me. all from scratch. that lady (a senior citizen) really knows how to cook.

i watched as others ate it. my throat just didn't work. with time, i now eat just about everything and it tastes great.

keep your chin up and be happy that your fine cook is young!!

cu,
larryb

#43083 03-28-2004 01:44 PM
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Darrell, for me, sweet was the first taste to go and the last to return. I could taste and eat salty things well into the rad, and that was the first taste to return. And just FYI, it comes back gradually. You will taste one bite of something and start to celebrate, then take another bite and taste... cardboard. Just one more small price to pay for being able to complain (grin).

#43084 03-28-2004 06:33 PM
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I have not tasted anything like cardboard or metal but like Joanna, sweet was the first taste to go and until now, it has not yet returned. Food like dessert, chocolate don't taste as I remember but not unpleasant, either. It is just that when people say it is very sweet, I can just imagine the taste.Other taste buds have mostly returned and I still enjoy eating food unless it is too dry or hard for me.

Karen stage 4 tonsil cancer diagnosed in 9/01.


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#43085 03-28-2004 08:20 PM
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I have really been relying on my sense of smell to compensate for taste. I use my memory and sort of fake myself out when I eat now. Coffee which I used to love now taste so bitter I can hardly stand it. I can't drink it hot now anyway. Can anyone drink sodas? They burn my throat so badly, but I do get tired of water. Any suggestions on something else to try. Sweet is just now coming back. I have much fewer taste buds to work with now too.

Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#43086 03-28-2004 09:46 PM
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Lynn, it was at least a year following the end of chemo/rad when I could drink anything carbonated. Just put that and anyting with vinegar, e.g.salad dressings, on the back burner for now. My taste returned just as it was before and I still cannot handle hot and spicy, but I was always that way so cannot blame the treatments. As nearly as I can recall, it was a good three or four months post treatment before taste began to return for more than one or two bites. And only recently, 18 months out, can I drink hot coffee and eat hot soup. Little improvements keep appearing, even now. So you have much to look forward to.

#43087 03-29-2004 04:11 PM
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Hi...

My taste buds came back almost the same. I do miss peanut butter. It just doesn't taste right. I also bought one of my favorite girl scount cookies....thin mints. They were disappointing also. I can now drink orange juice which was awfully hard on my throat.

Khaja


Khaja
SCC Base of Tongue Stage IV. Diagnosed 12/02
#43088 04-13-2004 02:28 PM
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Lynn,

It is good to hear that you still taste. My mom had 75 % of her tongue removed, rad is soon to follow. Her doctor told her she will not taste anything after rad treatments. The tone he used was so final and crushing to her. She knows it won't be the same, but knowing that only if one taste bud survives its somthing to hold on to. How long was it when you noticed your firtst taste?
Annabel

#43089 04-13-2004 03:45 PM
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I remember eating chocolate during treatment and it tasted like pure salt. I eat it some now but it just isn't the same as I used to love it. Six months after treatment, there are days things have a strange taste and sour cream, some salad dressings or yogurt still burns the inside of my mouth. I ate jalapeno peppers last week for the first time and if I cut them into little pieces, they were very, very good again!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#43090 04-14-2004 05:25 AM
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I've been afraid to try jalapeno peppers so far although I've had good luck with a little bit of pico. I used to love spicy food before treatment and I've been leary of it since treatment ended. I'm just now getting back into having salsa and chips at my favorite tex-mex joint. Over all my sense of taste has been coming back quite well, although sweet is the slowest to return. I would say that I'm at least 70% of where I was prior to treatment. Of course 70% of my taste is pure joy compared to no taste at all. I've been lucky in that I've been able to finish everything I've attempted to consume.

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
#43091 04-14-2004 04:38 PM
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I'm about year and a half out from having the tonge radiated, and pretty much of the taste sensation returned. I think. Or, I'm so used to how things taste to me now that I think it's normal.

Went through a period where I thought everything tasted pretty much bad, I'd ask dinner companions thinking it was my taste buds being shot, and they confirmed it really did taste bad!

Some things still don't seem to taste the same, thousand island dressing, steaks for some reason taste differently. Went to Ruth's Chris for a dinner a couple of weeks ago, had what should have been a great steak, probably it was, but it just didn't do it for me anymore. Bummer

Bob S.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#43092 04-15-2004 02:42 AM
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As you can tell we all have had a little different experience w/taste. I guess everthing salty is back OK, but sweet is not, 1st couple bites taste sweet after that it is very bland. I still eat sweets (not chocolate,bad,bad,bad)I just eat less. In June I will be 3years out. Good luck and take care!


JOAN
#43093 04-15-2004 03:21 AM
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I agree on the chocolate thing, as much as I hate to admit it. My denial still prompts me to try it from time to time and I try to remember what it used to be like as I eat it. Just not the same.

I heard steaks sometimes have a metallic taste and I found out from my oncology nurse that if you put a few drops of fresh lime juice on it, the metallic taste is gone.

I am the chief cook of the family and cooking was my L-I-F-E. Last night my youngest (13) broke my heart. He said, "Dad, it is so sad the food you cook now just doesn't compare to how you cooked before the cancer. I know you don't cook from recipes but by taste and I don't really mind too much." I am sure he meant well and he was accurate, but... frown

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#43094 04-15-2004 05:50 AM
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Hi Lynn,
I was drinking soda at 6 months post Tx. I like coffee too and quit drinking it for over a year. I am back to drinking (hot) coffee daily and really enjoy it. For some odd reason I could taste coffee flavor the whole time so coffee flavored milkshakes and Carnation Instant Breakfast worked well for me - hot coffee was out though. I eat chocolate again but it's still not as enjoyable as it once was. The first solid food I ate was a very rare filet mignon and it was delicious. I found dry meats to be a form of torture - like overcooked chicken or pork for instance. I love salsa and salad dressings and have no problems with them today. Pasta's and rice dishes still seem to work the best for me. I used to love baked potatos and they are just not the same.

The taste buds started recovering very quickly after cessation of treatment. I think that the salt taste bud comes back first so the body can protect itself. Sweets were the last. When it was at it's worst food tasted like everything from cardboard, metallic or sh*t. It was wierd because everything smelled normal. After a while my sense of smell compensated and got more acute. I could almost smell milk starting to turn without opening the container. It was strange having foods not taste like they smelled.

Thank God that phase is largely over with!


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#43095 04-15-2004 08:42 AM
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Hi Lynn, I am almost two years out from radiation treatment. For about the first year, NOTHING tasted right or the same to me, but Thank God, I am getting my taste back, have been drinking coffee again (for the past 6 months), cannot drink soda of any kind, still burns. I can eat pretty much everything again but have a little bit of a tough time with steak and actually any kind of meat. Need to remind myself to cut up in small pieces, chew well and go SLOW.....cannot tolerate anything real spicy yet, that may always be, I don't know. Chocolate is not the same. I just enjoyed a delicious crab cake (minus the roll) for lunch and french fries with a little catsup....mmmmmmmmmmmmmmmmm. It does get better over time....God Bless, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#43096 04-15-2004 01:21 PM
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My experience is rather similar to Joan with my sweet taste almost disappeared. Salty food tastes almost the same as before. I sometimes have to use my smell and imagination when eating but that doesn't affect my appetite at all. I am now 2 and a half years post diagnosis and gained back all my lost weight a long time ago. Things will get better for sure but the taste buds may not be 100% back to normal. A small price to pay!

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#43097 04-15-2004 06:35 PM
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I guess I can add to my long list of things for which I am thankful the fact that chocolate tastes wonderful post rad/chemo. In fact I eat way too much of it, not having to worry about tooth decay (grin). What is strange is that I could take it or leave it before, not a favorite taste, and now I nearly crave it, really good dark chocolate being the favorite. How strange that we are came out of treatment a little bit different!

#43098 04-16-2004 09:25 AM
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I have only had laser surgery.. but sweet things burn.. But the red wine is still ok... There is a God...
Love and Hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#43099 04-16-2004 01:19 PM
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Joanna,

I am soooo jealous! I knew as bad as chocolate tastes to me, somebody was enjoying a bit too much. Now I know who. May you eat till you burst and enjoy every last bite!! I USED to love dark chocolate so much that sometimes I eat chocolate and try to fake my taste buds out by imagining what dark chocolate used to taste like.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#43100 04-18-2004 02:07 AM
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now, see, this is evidence everyone is different. Most food tastes normal (-ish) to me but only recently did beer start to taste normal. The thing I appear to have lost is a taste for wine; I don't know if this because my taste buds have changed or because I didn't drink any for so long that I lost my taste for it. Bit sad, but not something I'm spending a lot of time mourning. Chocolate, on the other hand, was one of the first things to taste good. Hurray for that -- given a choice between chocolate and wine, I'd have to say chocolate almost every time.

#43101 04-18-2004 10:51 AM
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Okay, LC, you and I can split everyone else's chocolate! (grin).

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