#91112 03-04-2009 08:22 AM | Joined: Mar 2009 Posts: 32 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2009 Posts: 32 | Hi all. Glad I came across this site and appreciate all of the support I have seen here. In a nutshell .. discovered neck mass 11/08; removed mass 01/09; final diagnosis 02/09 as Base of Tounge - Stage 3; traveled to Long Beach Medical Center, CA to meet with specialist for ultimate seeding of throat and neck; first chemotherapy and radiation on 03/02/09.
Anyway, so far I am keeping a pretty good attitude. Sort of like the old, i believe Biblical saying, "I cried because I had no shoes, until I saw a man with no feet."
God Bless all of you, patients, survivors, and caregivers, and fight the good fight!!
John Retired US Government (DoD)
Age: 61
SCC/BOT discovered neck mass 11/08
Removed neck mass 09/01/09
Final Diagnosis after scoping on 02/08/09
Chemotherapy and Radiation: Paclitaxel and Carboplatin, 8 weeks of chemo (1X weekly) and daily radiation both sides of neck). First treatment 03/02/09
| | | | | 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 | Welcome to OCF. Perhaps you can give us a bit more information about your treatment course and when you do that, I'm sure there will be someone who can help you with hints and tips. Tell us about your radiation treatment - that type of "seed radiation" while not entirely new, is certainly "newer" to me and I would like to know more about it. What type of chemo and frequency? And, of course as you will note, we are a snoopy group - we like to know things like how old you are, did you have any of the typical risk factors (smoking, alcohol, HPV). Will be great to get to know you and hopefully offer some assistance to you in this detour your life has taken! 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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Hello John in NM. I have friends near the western border of NM in Socorro and I lived across the border from Pie Town in AZ for about 10 years. Beautiful, diverse country, truly enchanted.
You might want to add the information about your cancer to your signature like mine is here from your profile page. It is easier than having to go through it over and over again.
Was your neck mass removal a dissection or just an operation to remove the mass? Did they do a pathology report?
You are truly in the right place for information, support and even some good humor at times. The site is search-able both in the forum and the main site, but never be afraid to ask. I enjoyed your quote - it does make you think doesn't it?
Patty
Last edited by Good1; 03-04-2009 09:34 AM. Reason: memory lapse
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2009 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2009 Posts: 32 | In regards to the seeding, my doctor recommended a Dr. Syad at the Long Beach (CA) Medical Center. I consulted with him last week. A few weeks after my local treatments are done, I will fly to Long Beach for Brachytherapy (more info on Google). What they do is implant about 13 flexible tubes in my neck and for three days, 2X a day, seed them with radiation. They also use Hypothermia. In and out of Long Beach in a week. 82% cure rate but I think we all know how that goes. Long Beach Medical Center has a decent web sight as well. As for my symptoms (which I will add to my profile) none...non-smoker for over 40 years and only minimal before that. Not much of a drinker. No drug use. No HPV. Basically in pretty good health prior to this. Hope that is helpful to Patty and Donna and any future responders. And BTW, my caregiver, BettyJean, my lovely wife of 32 years, is the best of any medicine they can give me!!
John Retired US Government (DoD)
Age: 61
SCC/BOT discovered neck mass 11/08
Removed neck mass 09/01/09
Final Diagnosis after scoping on 02/08/09
Chemotherapy and Radiation: Paclitaxel and Carboplatin, 8 weeks of chemo (1X weekly) and daily radiation both sides of neck). First treatment 03/02/09
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | John do you mean hyperthermia, just wondering. How are they applying that treatment?
Best
M
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: 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 |
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | John I had o have my teeth removed for seed implants in my tongue. That treatment had me so messed up that 9 months of my life is a complete blank. Not 9 months after but the preceding 9 are erased and so far no return of even a day.Good luck and I hope you aren't 1st like I was for the tongue implants.
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: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi John and welcome. Sorry you have to be here but you will find tons of support and information here. I am also fairly new here. My husband's name is John and his diagnosis sounds very similary to yours. He found a lump in his right neck the Friday before Christmas, his info is in my signature. Best wishes to you. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | John
Welcome to OCF. You will find so much info here, glad you have found this site. There is a search bar on both the forum and also on the main OCF pages where there is a ton of info. Best of luck with your treatments.
ChristineSCC 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  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, how are you feeling today?? I just have to ask seeing as you are so much a part of what happens. We need you up on your hind legs kickin up a storm.
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
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