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Joined: Dec 2010
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"OCF Canuck"
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"OCF Canuck"
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Hi there actually from what misskate has mentioned of her experience, she can eat and taste (there are taste buds all over the mouth. ) she can speak intelligibly - and eat an swallow. It may take time to get to that point but he is doing well. Hugs!


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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Tammy, Thank you so very much for your sharing of logic reality wrapped in such warm gentleness.

Your message is taken to heart.
You of course are right and I will stop "getting ahead of myself"!

After my first round of chemo in the hospital for 5 days, I went home for 2 an back in the hospital for 7 to cure mouth sores and gain weight. Back home and better AND tumor seems 87+% less painful, maybe even just somewhat sore. - First Round WORKING!


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: May 2012
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Cheryld, Appreciate the encouragement and warm thoughts!


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Oct 2012
Posts: 118
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Posts: 118
Hi Walt,

My husband has just been diagnosed with SCC at BOT stage III. He is seeing 2 surgeons at UCSF Mt. Zion. I'm sure you are familiar since you from the area. The one surgeon is a reconstructive surgeon. He told us that he will use a free flap from the thigh to create a new tongue and esophagous for the part that they must remove. They are only taking part of his tongue. The doctor says he will bew able to eat, drink, and talk once recovery is complete. No Chemo or rad this time. The doctors are part of the Helen Diller CCC. It's a lot closer to home than Houston. And they are in the top 15 Hospitals in the nation along with their cancer center.

Last edited by ChristineB; 11-20-2012 05:47 AM. Reason: removed phone number

Bette/CG to husband Reggie 66

dx 1: SCC Soft Palate (12/06)
tx: chemo and rad

dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes

dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
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Hi Bette,

I did a second opinion at Stanford Cancer Center. The doctor was Harlin Pinto. He is an Assistant Professor and he is 100% SCC of the tongue. I was really impressed.

Sounds like your husband has been through more than his share.

Surgery sounds tough. My ENT doctor prefers this and he is from UCSF. My Radiologist points to Brachytheropy. Friday I enter El Camino Hospital for 5 days to receive my second round of chemo.

I wish you and your husband well and a Happy Thanksgiving!


Squamous Cell Carcinoma base of tongue
Erbitux 12 wks
IMRT Radiation ended 8/7/12
MRI Cancer live 10/3/12
3 rounds Chemo (Cisplatin, 5FU, ??)
Brachytherapy 7days ended 1/28/13
PET SCAN 4/19/13
70 yr old 8/20/12
Walt
Joined: Feb 2007
Posts: 790
"Above & Beyond" Member (500+ posts)
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Joined: Feb 2007
Posts: 790
Many options to do - unfortunately surgery for most tongue cancers is the best chance for a cure. This kind of cancer can be very aggressive and spreads like wildfire. It certainly is a tough choice to make ! .....but it may be different with your pathology and because it is base of tongue. Good that you are getting lots of opinions- just with what you feel is the best option for you

You will have people to work with on speaking and eating. It will be compromised but you will be able to gain things back- how much or how little depends upon how the surgery goes and how your rehabilitation goes an dhow much effort you personally want to put into it. Some people have all the desire there but for whatever reason the recovery from the surgery and treatments didn't go as well- and other could have had more success if they had just tried more and not gotten discouraged. Most glossectomy patients are at least able to eat a soft diet and become fairly intelligible with thier speech... and that is sure much better than the alternative.

Thinking of you Walt and hoping you have the very best outcome possible whatever path you choose!



Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Joined: Jul 2012
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Water and other liquids consumed daily should be half your body weight in liquid ounces. I'm 180, so my intake should be 90 ounces a day! Everyone's intake and requirement is different. 48 ounces would be for a 100 pound person, and would be under hydrating in most cases..FYI.


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: Sep 2006
Posts: 8,311
Senior Patient Advocate
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Posts: 8,311
Paul,

That's interesting. We have never had that presented on this site, at least in the 6 years I've been here. My docs at Moffitt told me 2500 cals a day which in liquid form equaled appx 48 ozs and they said to drink 48 ozs of water so when I went to a strickly liquid diet I was consuming (on a good day) 96 ozs. Now I was only 150 at the beginning of Tx and they never mentioned my weight as part of their recommendation but of course that doesn't mean it didn't figure in.

So my interest is where did you hear that formula?


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: Mar 2008
Posts: 3,082
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Joined: Mar 2008
Posts: 3,082
For those of us who don't have much faith in formulae about how much liquid or water to drink, there is an all natural test that any doctor will admit (okay, you may have to push them a little bit before they fess up) is the best indicator of hydration:
the color of your urine. The darker it gets, and the more yellow or orange the urine is, is an indication of dehydration.
The lighter the urine is, the more hydrated.
This assumes a normal kidney, not having jaundice, etc or having just eaten beets.
If your urine is pale yellow, you are most likely fine.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Joined: Jul 2012
Posts: 3,267
Likes: 1
Hi David,

I exercised since I was 15, up until cancer put and end to that, and had read that often. There is a nutritional formula for cancer nutrition similar to BMI, and for adequate hydration, which basically comes to half your weight, that I also read in a medical oncology book I have ( $$$). I'll try to find which book it is, but I probably have 25 or so. Maybe Principles and Practices of Head and Neck Surgery and Oncology or Head and Neck Cancer..not sure. These books have several hundred pages, and wish I recall 1 percent what I read.


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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