| | Joined: Oct 2013 Posts: 2 Member | OP  Member
Joined: Oct 2013 Posts: 2 | Just found site wife & I could have used it when I went thru treatments. Not sure how much has changed in the treatments over the years, but am sure the terror factor is about the same. I spent about 18+ mos. begin'g in '94 trying to find out what was creat'g the periodic pain in my right ear when I yawned before everyone (dentist & Drs.) threw up their hands and asked if I wanted a biopsy. My tumor was a "reverse presentation," so the "visual" after the biop was "not cancer." The tremendous shock came a few days later, cancer base of the tongue, and treatments began right after the first of '96. On 2nd day of radiation had 1st of 2 planned chemo (Cissplantnum & 5FU) & was in hospital by next day. Chemo & I did not get along as it created blister burns begin'g in my mouth & clear thru my intestinal system (no chemo #2). Feed'g tube was put in on day 4 & I did not eat, drink and/or talk for the next 5 months, as the radiation now began to blister the chemo blisters in my mouth & on my tongue.
It is interesting that in reading the main page of the website Brian Hill refers to the "light at the end of the tunnel," which was a phrase and visualization that I personally used to get me thru the ordeal of the treatments. It felt like I was in this pitch black cave/tunnel on the worlds largest, most twistiest and scariest roller coster ride ever created, as I never knew from one day to the next what it would bring or how I would feel. However, I would always "look" for this (at first) pin prick of light and try and focus on "the light at the end of the tunnel" and imagine the "light" getting larger and stronger day by day during treatments, no matter how I happened to feel at the time. It was a day to day process.
I feel exceedingly blessed to still be here and be able to enjoy life tremendously with this second chance. This coming Feb ('14) will mark my 18th year of end of treatments and being cancer free. Yes, times of "dry mouth" have not completely vanished, but are infrequent and very livable. The 1st 6 to 8 years I rarely went any where without carrying my water bottle, now I consider myself "normal" when it comes to water (I can go for my walks w/o carrying a water bottle). Food tastes great, I got much of my thin salvia back, it was a long process, but little by little it has gotten better and better. No, annual check-ups never go away.
Jim, age 72
12/95 Biop on 55th B-day
12/95 Dx: SSC - BOT; no smoke/chew, only very occasional alcohol
1/3/96 Start 35 days XRT
1/5/96 Chemo #1 (Cisplatin + 5FU). burn blisters internally from mouth to other end
1/8/96 Hospitalized; lost +20#'s over wknd; lost 2 days XRT
1/11/96 PEG: stabilized wt loss @ -30#; no eat/talk 5 months
2/22/96 End XRT
QOL, all things considered, FANTASTIC!!
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | JElm, let me be the first to congratulate you. A great story about a courageous person. You've inspired this nearly 5-year survivor. And I was just about that age when I was diagnosed.
See you in 18 more years!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Wow, from a newly diagnosed patient who hasn't even started radiation yet, it's hard for me to even think about where you are and what you have already gone through.
Your story helps in ways maybe not even imagined yet. Thank you for that.
I don't see a light yet, not even a tiny one. So, where's that flashlight.
Looking forward to watching my grandson graduate ... in 18 years.
Tony
Last edited by n74tg; 10-15-2013 08:28 AM.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 | Welcome to OCF, JE! Its great having long term survivors join our group. Its not often a survivor joins who went thru everything prior to this site being created. Treatments havent changed much for this awful disease except for the IMRT radiation being the norm now. Im sure you will find some interesting reading and maybe make some posts in the new section for long term survivors and issues. Brian has quite a story. Here is the link so you (or anyone else who is interested) can read about it. http://oralcancerfoundation.org/about/brianhill.htmhttp://oralcancerfoundation.org/about/key-staff.htmCongrats on being a long term survivor!!!
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Thanks J, I just finished my tx yesterday and i love reading survivor/conquerer stories. I can't imagine how scary that was so long ago without a place like OCF to carry you along your journey. Very cool that you joined this site at this time!
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Awesome and welcome...
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
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Glad you found this site. Your story will surely give a much needed morale boost to many of us.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Welcome here, J! You're going to be a valuable inspiration to everyone!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Thank you so much for sharing. We just completed 2 years out and you are an inspiration for us!!!
Welcome to our OCF family!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Jim, welcome, and thanks. I just hit one year (and had my speech/swallowing assessment yesterday - damn cookie with barium, who can ever swallow that stuff without water?), which really focuses my thoughts on the saliva, so the abatement of dry mouth for you was very encouraging for me.
I hope to make a similar post in 17 years!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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