#59172 10-04-2006 08:35 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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.
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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#59173 10-04-2006 08:55 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | 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.
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.
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#59174 10-04-2006 10:34 AM | Joined: Jun 2005 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2005 Posts: 49 | 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.
Dx June 2004 stage III right tonsil 1 node involved, 70 radiation tx completed 08/20/04, no chemo or surgery, 32 years old and 26 weeks pregnant at dx and tx. & non-smoker and non-drinker
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#59175 10-04-2006 11:38 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2006 Posts: 109 | 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" ) | | |
#59176 10-04-2006 12:57 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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
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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#59177 10-04-2006 12:58 PM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Riley and Mary...did either of you have IMRT rad?
Mary, salt is one thing that helps me "taste" better.
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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#59178 10-04-2006 02:44 PM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | Yep. I had IMRT. 7 positions, 2 'zaps' in each position every day for 6 weeks.
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.
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#59179 10-04-2006 03:28 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2006 Posts: 378 | 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
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#59180 10-05-2006 11:06 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | 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. 
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.
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#59181 10-05-2006 11:11 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | RileyMc,
Congrats on your little victory
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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