#43090 04-14-2004 04:25 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2004 Posts: 162 | 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.
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#43091 04-14-2004 03:38 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2002 Posts: 458 | 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.
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#43092 04-15-2004 01:42 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Apr 2002 Posts: 80 Likes: 1 | 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
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#43093 04-15-2004 02:21 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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... 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
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#43094 04-15-2004 04:50 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | 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)
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#43095 04-15-2004 07:42 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | 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---
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#43096 04-15-2004 12:21 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | 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.
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#43097 04-15-2004 05:35 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | 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 08:25 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | 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
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#43099 04-16-2004 12:19 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | 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
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