| | Joined: Jun 2013 Posts: 18 "OCF Down Under, Kiwi" Member | OP  "OCF Down Under, Kiwi" Member
Joined: Jun 2013 Posts: 18 | I have the works, laryngectomy, 2ndry throat cancer, neck dissection, tracheotomy, stoma, neck fistulas, cannot speak, eat or swallow liquids and just had a PEG fitted via stomach incision and about to start Chemo as I've run out of surgery and radiotherapy options. BUT it's 13 years since my first round of throat cancer and so far I've managed to enjoy everyday :-)
No signature yet - can't grasp the acronyms
Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Mike - So great to see that you are enjoying every day and staying positive. Re Oral Cancer acronyms, here is an alphabetical list that I put together some time ago for my webpage, and taken from those I found on this forum. It is not complete but it is a start (I'm working on adding more.) Hope it helps. Oral Cancer Acronyms
Last edited by ChristineB; 08-01-2013 07:38 AM.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | Welcome and I would say hang tough but obviously you already know how to do that!
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: 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!
I sent you a message that will help you with navigating the forum, a list of abbreviations and detailed instructions on how to make a signature. This should help you to get around. If you need more assistance please let me know and I will help you.
I would suggest if possible to get a second opinion at a top cancer center. Im sorry but I have no idea what your country has available. Here in the US several OC patients have been thru radiation more than once for oral cancer, some even 3 times. So it cant hurt to ask especially since your first round was so long ago.
Wishing you all the best with everything!!!
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 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Hello survivor!
Enjoying every day: Now there's a goal I can take to heart.
Welcome to you --
Mamacita
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Mike, welcome.
Sounds like you have been through the mill. I'm sorry to hear that you are not being offered further surgery.How many times have you been treated with radiotherapy? Quite a few on this site have been irradiated more than once. I hope they come along shortly with some advice. Maybe , if the hospital you are being treated at wont do further radiation they could refer you to another centre that does. There is definitely no harm in asking / pushing your case. Now that you have the PEG fitted I hope your nutritional status improves. Get all the Ensure/Fortisip down that the Dietician recommends.
Congrats on surviving 13 years - so far.
Tammy - in Whangarei
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there welcome...13 years is a long haul! You're a hard core survivor kudos!!! 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
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Christine - I just noticed the link for Acronyms above is not working. I think I know what the problem is and am working on it now. Will send you PM so you can change it to work here.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | I fixed it. Here is the link you were trying to post. Oral Cancer Acronyms
Last edited by ChristineB; 08-01-2013 07:39 AM.
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 | | |
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