#24506 10-16-2007 04:35 AM | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | Hi, Y'all. I'm new to the group...we've been fighting a squamous cell cancer at the base of my tongue since June '07. I've done 3 real chemo sessions (1 treatment every third week) and am doing TOMO radiation right now (M-F for seven weeks)with a once a week dose of Erbetux (sp). Getting food into me has become a pain, so this past week we had a PEG installed and I am now using it in the evenings and trying to eat soup or soft veggies during the day. I can't get rid of the salt taste right now so anythig going into my mouth just tastes like sea water....this sucks for a BBQ judge  I can see there is a ton of information here and will try to read as much as I can and IF I can pass on anything I learn, I sure will. Best wishes to all, Gary
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
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#24507 10-16-2007 07:08 AM | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Gary -- Welcome to the group. I share your BOT diagnosis, but completed treatment in mid-July. So far, I am cancer free, though had a little scare recently with a PET scan lighting up on some neck nodes, which the doctor thinks is nothing. Not familiar with TOMO radiation -- I had IMRT for 39 sessions, and had Cisplatin weekly with no Erbitux. I strongly suggest using baking soda, salt and warm water to rinse mouth out several times per day. I know you already have a salty taste, but this works for some reason. At least it did for me. Also try the Biotene products (mouthwash, toothpaste, moistening liquid/gel), which help both with taste and dry mouth. Read the "Read this First" post and put your diagnosis details in your signature. That way, folks with experience with your particular flavor of cancer can help. This is a great site, so use the Search links and keep coming back!!
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
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#24508 10-16-2007 07:35 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Gary and welcome
you are the second person this week to post about a salty taste in their mouth.I had never heard of that side effect before.Hope you find all the answers you need this is a great place to learn and get support.
good luck
love Liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#24509 10-16-2007 01:45 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Hello, Gary: Welcome to OCF! Keep us posted as to your progress, and GOOD LUCK!
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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#24510 10-16-2007 02:38 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Hi, Gary- you are a BBQ judge from east Tennessee? I am issueing you a challange as soon as that salt taste goes away to come and eat our southeastern Arkansas BBQ  .Glad to know you have a peg to help you through this. Keep swallowing and keep your weight up via peg as you need to. Best luck going forward. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#24511 10-16-2007 04:24 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Gary,
Welcome ....You will find this site a great source of information and support. I had cancer of the lateral tongue and didn'y do chemo or rad so I can't answer alot of those questions. I did lose my one salivary gland and I can say that Biotene is a GREAT product though !!
A large part of dealing and making it through is attitude ..But you seem to have a good spirit about you .
As far as you and Amy go with the southern BBQ's I have some friends here in Upstate NY opening a "roadhouse" ( bbq) in Dec so If you all have any good recipes or menu suggestions let me know!! Cus I am sure we don't do it like the south does !
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#24512 10-17-2007 02:24 AM | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 | You have BBQ in SE Arkansas.... {{ducking}} I didn't know what BBQ was until I moved here to Memphis.... Now that oughta start something  The good news is that I actually got some ribs down 2 weeks ago. Granted they were wet ribs, but my god they were good.
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | |
#24513 10-17-2007 01:19 PM | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Uh, excuse me, but my vote is for good ole North Carolina barbeque...vinegar based...um, um! Ok, emmylou (Lois and Buzz)...back me up! :p
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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#24514 10-17-2007 02:32 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Kevin, the Memphis folks learned how to cook bbq from their Arkansas grandmothers And I recently saw a couple of shows where the New York folks imported some Southerners to teach them how to do bbq. When I have time, I'll post some sauces. Meanwhile- good eating- everyone. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#24515 10-17-2007 02:54 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | lol....'tis TRUE, Deb! is there really any TRUE BBQ outside of NC?
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
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