| Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Jim,
When I called my BF Bob Fox, older than dirt, he wasn't quite your age so I would have to call you....older than the Big Bang?? Don't know, just thinking out loud.
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.
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | David, Anne-Marie, there is (at least) in my case a distinct difference in sensitivity on the operated vs the "native" portion of my tongue. Both portions received similar radiation dosages but the allograft side (aka franken-tongue) is a lot more sensitive to irritants (still). The water color comparison is perfect, plus the the taste seems to fade (my case) a after a few seconds. Still, it is a lot better than it was just a few months ago.
M
Last edited by Markus; 01-16-2008 04:13 AM. Reason: speling.. see what I mean?
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | My son also mentioned the taste fading after a few seconds - don't know if it still does - but I remember at the time telling him he should eat fast before it starts to fade! He also mentioned that certain tastes seemed to come from certain parts of the tongue. It made me start trying to analyze where a particular taste was coming from!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I don't believe your tongue has different taste areas but all taste buds send a signal to the brain telling it what it just tasted, i.e. sweet, salty, sour, etc. I think there are 4 distinct tastes that the buds can distinguish from unless they have found more since I was in college. I was pre med until I switched to accting so I didn't have to stay and get a terminal degree. If I'm wrong, blame it on my chemo brain.
I also had the taste go away quickly, like after 1 or 2 bites and that lasted until just about a month ago when I noticed a slight improvement in overall taste, saliva and the resulting joy of eating.
Anne-Marie, for me eating quickly didn't make a difference. It was as if once the tongue sensed the taste, the nerves were overloaded and stopped sending the signal anymore or the brain was not up to receiving the signals since they hadn't been used for a while and had to rebuild their pathways ?? Drinking seemed to help clear or reset the tongue or nerves for another signal. Now I taste much longer into the meal without having to drink and I am able to eat more bites without having to drink as well. That is my slight improvement and it does make an enjoyable difference. For instance I can now eat a roll, a half of sandwich, 2 pieces of pizza, a few cookies, a piece of fried chicken, a piece of chocolate cake to name a few, all without having to take a swallow of liquid and I taste and savor the food each bite and I haven't been able to do that since 2 weeks into my Tx. Now I am retrying many things I gave up on and I push it to see how long I can go without a swallow. As they say good things come in small packages.
Last edited by davidcpa; 01-16-2008 01:17 PM.
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.
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | A little more than one year out and taste changes daily, some for the better and some for the worse, but I'm eating and enjoying!! I would say that taste is about 50% and like Bill, things are totally different (Chocolate is yukky for me too, but I've had some (dark chocolate usually) that wasn't bad). The one thing that is weird is after a few bites all taste flattens out. I had an appointment with my surgeon yesterday and told him that my taste had improved a lot in the past 6 weeks (Picking up flavors, etc.). He said that the radiation really changes the tissues in the throat, affecting vocal chords, swallowing, virtually everything, especially taste. He did say I have done remarkably well and with my progress (Age and prior healthy state) he could see me continuing to recover and improve/adapt (Adapting being a key word) into year two. He did say that is not always the case but he was optimistic about it. Made me feel positive about it as well!! It is strange to take three or four bites and really absorb some flavor, and then take bite 5 and it's like eating a piece of cardboard!! I joke with my kids all the time though when they say something tastes bad, I tell them it tastes terrific!! They laugh and say, "Dad, it all tastes good to you!!" They're Right!! Got to laugh about it.... Keep experimenting!! 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 ****
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David has me jealous being able to eat and taste. Especially the pizza and chicken. I have been trying anything that i can mash into a pulp and swallow. Hard to find food soft enough right now with now teeth LOL. Made stew yesterday using butterball turkey sausage. Turned out pretty good and was easy to mash . Hope you all have a good day.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Pizza is no problem for me today - I was able to eat my first pizza around 2 months post Tx. Chicken is trickier since most places overcook it. It either has to be moist or with lots of sauce. Meat I order "charded rare" so it's nice and juicy.
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)
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | White meat from chicken and turkey are the dryest, dark meat is erasier. Try mayo with pureed cold chicken. Also avocado is a great way to moisten foods. It is particularly good mashed into tuna.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I am 4 years past my first surgery and 3 months post 2nd partial glossectomy and I am pleased to say that while some tastes have changed (after my first surgery I lost my love of tomato soup - however got it back after the 2nd surgery - go figure!), my taste is probably about 60% of original and that is only with about 1/8th of my original tongue left. It will get better, but as was previously posted it is one of those things you note on reflection and cannot sit around waiting for.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2007 Posts: 214 | At 6 months post TX, most things taste fine, except ice cream, strangely. I have recently regained tolerance for spicy foods, and seem to crave them now.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008. Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer. | | |
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