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Joined: May 2007
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On a lighter note.. When I mentioned to my family that everything tasted like wet wallpaper my nephew suggested considering HIS mothers cooking that might be an improvement.....
Seriously, it will take a while and it will be in stages how taste comes back. To this day I cannot stand anything really hot.



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.
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One of the first tastes that came back for me was coffee and I love coffee, so that was great. I am 3 1/2 years out of treatment and there are still a lot of things that I can't really taste or that taste "off" to me. I used to love dark chocolate, and now that tastes terrible. It's just our "new normal".


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Patient Advocate (old timer, 2000 posts)
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Same here. Coffee was the first drinks I could taste following radiation. I think it's the bitterness for me. Later on, I could taste beer, broccoli rabe, chocolate....It's amazing you eat all your life, and then after treatment you have to rediscover what foods taste like.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Joined: Dec 2003
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Good luck Ken. We are all in your corner!

Funny, coffee was the first back for me. Chocolate never did taste the same but I still went for whole milk lattes with one shot of chocolate just because. laugh

Second for me was pasta sauce so I bought bottled sauce and pasta and lived on 3 a day meals of that with a milk chaser. I am just now able to multiple gulp down an entire glass of anything. It is pure joy. I progressed to 4 cheese lasagna with sausage until my Otolaryngologist said, "Remember when I told you you needed to gain wt to make it short term? And I told you to eat everything you could find to add calories so your body wouldn't give up?" I answered, "Yes". He then said, "Well you can certainly cut back to regular food and portion size now." I asked, "Are you calling me FAT?" He replied, "No...but you are HUGE with that 50 lbs you put on!"

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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Luckily coffee and the one beer I tried are still ok, i am sure they are leaving soon though lol was able to taste green and red pepper in a stir fry last night just not as strong as normal hoping things stay at this level although prepared for worse.
I've put on ten pounds knowing this was coming hope to loose thirty otherwise gonna have to go on a diet.
I hope my loving wife doesn't take advantage of this and stop adding the tlc to our dinner table I'm sure the kids will let me know though....ken


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
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"OCF Canuck"
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For me if it is fresh and in it's natural state it tastes best. POP I still can't drink and most canned or processed foods are horrible! They have a chemical taste. But give me a freshly made pasta with veggies and sauce and all tastes normal!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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"OCF Canuck"
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Thirteen treatments in starting to get the sore throat now taste mostly gone still got a couple buds working it seems. I find the more flavourful foods are still hinting what it used to be like, I found out iced cappicino at Timmy's go well plus at 250 calories help the intake may have to go unleaded though, caffeine free, the pasta definitely is easier on the throat lots of extra sauce helps, have a good week starting to look like spring here....ken


46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
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Glad you checked in. You are about half way finished. Keep up the great work with eating, drinking and swallowing! It really will make a huge difference in how you feel.

Hang in there!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jul 2012
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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The 2nd week is usually when the radiation effects start being felt. The good thing is the 13 visits are in the history books, done with! I used to keep a wall calendar and X out each day I completed, which for some reason kept me going to keep score with this battle, and each day closer to the prize. Good luck this week.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Jed's up an one foot in front of the other - soon enough it will be over. smile


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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