#90934 03-01-2009 07:44 PM | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | I jumped at the priest's offer to annoint me with "Last Rites" AFTER the surgery (hemi glosectomy, mandibulotomy, left neck dissection and forearm freeflap ) but he did not laugh at my joke that giving up my tongue for Lent should get me years off Purgatory. Now I have had all the Catholic sacraments except for ordination as a priest. so there is an upside to Cancer recurrence. Just got out of ICU a few hours ago thanks to all the posters who answered my 10 day hospital thread plus I knew enough to have my first cans of Jevity done as gravity feed rather than forced thru NSG with plunger, So far speech therapist and ENT think good chance of my remaining part of the "final five" OCF posters who did radiation, chemo and now surgery without a PEG The next 5 days in hopital will tell, just got access code for hospital wifi,so will post more later.
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: 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 | Wow. Wonderful to hear from you! I hope you are feeling okay and look forward to hearing more from you.
Donna
(BTW...don't try to shave off TOO much time from purgatory - I'm sure I'll be there for awhile so will want the company!)
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: 130 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2008 Posts: 130 | Charm, I just knew I would read a post from you before I went in for mine. T minus 7 hours and counting. I have to be at the hospital by 5:30! Hope you recover quickly. Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side. ND March 2, 2009 reoccurance dx'd Aug 19, 2009
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Charm,
I've been thinking of you...Stay strong and keep that positive attitude.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Charm, you are too ornery for purgatory. You would drive that lil devil bonkers. LOL Congrats on waking up with your humor intact.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Charm, I saw that you were logged on last night and I watched the board looking for a post from you until I was too sleepy to stay up. Glad to hear that you have your sense of humor. In my experience, most of the catholic priests did not have a large sense of humor. What does hemi glossectomy mean? Is that similar to the Dodge hemi? Seriously which part of your tongue did they remove? I just recently realized that glossectomy did not mean that everyone's operation was similar to mine. I love that I keep learning new stuff every day.  Relax and take the time to heal. Look forward to hearing about your progress. Amy good luck. Patty
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 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | in my case the tumor came back at the very base of the tongue all way back and down. Right where it had been before radiation I hope to post tonight as I am suddenly beseighed by well meaning but fundamentally misguided case workers. occupational therapist, plastic surgeons who all seem to think that in my pre hospital stay I climbed stairs on my tongue or forearm It;s a struggle to get them focused on what I need to have done, going to sign off to walk one of the most persistent ones into the ground so they will declare me exempt from participating in the pathetic shuffle around the halls that reminds me od my old college friends who were exras in the original george Romero dfilms in pgh 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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Maybe you should give up "helpers." You seem to be doing well on your own. Happy healing.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | [quote=Charm20] to walk one of the most persistent ones into the ground so they will declare me exempt from participating in the pathetic shuffle around the halls that reminds me od my old college friends who were exras in the original george Romero dfilms in pgh [/quote]
I participated in the "walk". Reminded me of a movie where everyone had to walk around in the same direction and one guy walked against the rest and everyone had a kiniption fit - don't remember the name of it. I think that they were prisoners.
Patty
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: 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 | Great movie....Midnight Express about the American kid caught trying to smuggle hash out of Turkey. I stopped all my smuggling activities after watching that movie.
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.
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