#77964 08-03-2008 04:08 AM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Well, sometime this morning marks the 1st year of my 1st surgery at the James CCC at Ohio State University. The beginning of a lot of things that confused my mouth as well as me. LOL..Pronounced Cancer Free and that was the beginning of a few problems. I could fel the Cancer for some reason in my tongue still. That is when Dr Pollock from Wheeling Hospital in Wheeling , WVa called and sent letters to my home explaining that the margins were way to close and the OC wold be back. Nedless to say he was 100% right. All of this followed with teeth being removed, radiation and Erbitux . Then Feb. 29th, lucky I only get that Anniv. once every 4 yrs LOL, I had the radiation tongue seed implants and 2 complete lost weeks. It seems no one can tell me what occured during this time, not even on my BDay the 21st of Feb. Anyway, I knew I was gonna come out on top of this stuff and outside of a few uncomfortable ball games and races in my mouth, I am still winning the fight. Have a great day all. I need my morning coffee. Gotta go.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I should have added that this was the day I lost part of my tongue and had a left neck dissection. Geez, this old dummy gorgot the most important part of the day. LOL Sorry bout that.
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: Jun 2007 Posts: 42 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 42 | LOL.. THATS FORGOT TOO NOT GORGOT...
Barb
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | LOL Barb,, you know how I proof read. I DON"T but should. Thank you mam.
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 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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | Congratulations Jim and is the coffee tasting OK now ???? Cheers Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have 6 cups every morning gabe and just gotta have it. Thanks for asking.
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Jim: What a long road you have had. Glad you are finally doing good. Have a cup of coffee for me 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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Jim,
You continue to inspire me! I can't wait to have coffee again.
Congrats.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Congratulations Jim,
It seems like just yesterday. Your continued strength and great sense of humor is an inspiration to us all. Your "speeelinng" leaves something to be desired, however.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 |
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Jerry, I was the champion speller even in grade school. LOL I just can't type worth a damn. I tried to learn in Business College but figured if I ever got into business, which I did, I would have a secretary. LOL Let her do the typing.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Jim,
I used to be able to do addition and subtraction without a calculator. What's happening to us? I think the grandkids turned my brain to mush.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Jim....congrats! Every milestone takes us farther away from that terrible first day. I am pleased for you and proud of your ever-positive attitude. I imagine that you have some private moments when you aren't totally upbeat..don't we all??....but I do so enjoy you here! You lift my spirits every time I read your posts.
I, too was a champion speller. Oops...maybe I should check my typing before I post this! I actually taught typing one semester (by filmstrip and a book) when I taught at a small private school where I taught English, Spanish, religion, and typing. I decided that getting pregnant was easier than that!!
And it was.
XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I can't type worth a damn either, Jim. Even though I've always been a good speller.I also have a hard time proof-reading what I've typed on a computer screen. I'm much better when it's on paper.
Anyway, CONGRATULATIONS!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Jim - You can gorget anything you like for as long as you like. I lost my taste for coffee, so have one on me.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: May 2007 Posts: 621 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 621 | Congrats Jim !!
Looking forward to MANY more !!!
Kevin 9 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 | | | | 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 | I was always the first to sit down in those damn spelling bee's even if I were last in line!! Thank heaven for Administrative Assistants and now spell check.
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 2008 Posts: 148 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2008 Posts: 148 | Congrats Jim . . . I need to start drinking coffee as latest articles now say a couple of cups is good for your health. How we seem to go full circle on so many food and drink issues.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I just have to say I really enjoyed these posts by all of you. Maybe I can quit smiling before I go to bed tonight. LOL,, I sure hope all of you have great days for the next 50 years or so.
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 2007 Posts: 346 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Wow! I had to get my 2 cents worth in. I remember writing about my 1 year 6 months ago! I loved how happy everyone was for me. I just danced around the room!!! I am smiling for you. You are an inspiration to all of us! I love to read your posts. Wish I could share a cup of coffee with you. I love it too. I did read also, that it was good for something or other. I had switched to green tea, but when it got cold, I just wanted coffee. And so it goes.... So absolutely happy for you!!! Keep up all the good habits that you can. SMiling for you, Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | | | Joined: Jan 2008 Posts: 179 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2008 Posts: 179 | Jim...you STILL inspire me!
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!! | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Va isn't that far away Debbie, who knows LOL
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Larrys daughter, you are one great caregiver to your dad , even if there are miles between you. Thanks to all of you, I have a lot of heros here to look up to.
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: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Hi Jim,
Just wanted to add my name to the list of people who finds you an inspiration! I hope that one day I too will be able to celebrate being cancer free for 12 months. In the meantime I get immense pleasure from your postings! Thankyou and may you have many, many more anniversaries!
Sue
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Hey Jim, I quess it really is not that far away. We all should have not a "re-union" but a "union". What would you call it. A get together somewhere, as many as can, for a little positive push of the moral. Maybe we will figure it out one day soon. We should all infiltrate into a hospital waiting room of one of our favorite(or not so favorite) doctors. Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | | | Joined: Jul 2008 Posts: 15 Member | Member Joined: Jul 2008 Posts: 15 | Jim - Congratulations on the anniversary. I remember when I hit one year after my glossectomy, I was so happy I would only have to see the ENT every three months instead of every month. Time keeps marching on and we get stronger every day. I never had to give up coffee - THANK GOD! CMB
Partial Glossectomy (Right) March 2007, Clear Margins, SCC T1N0M0 | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2007 Posts: 580 | Jim, All the best my friend and congratulations!! (I guess the gas, matches and dynamite will be used for a celebration..HeHe!) Seriously though...you have been a strong force and someone for me to look up too and I wish you many more years and look forward to your realistic comments and uplifting sense of humour. Keep on trucking! Peace and happiness are in my prayers for you and your family. Cheers, Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend. Live, Laugh, Love & Learn.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Awe man, thanks to all of you I made it thru the 1st year. Debbie sounds like she's scheming to get even with some Dr at a hospital in Va. LOL Lets go for it Debbie one day soon. At least we would mostly all have some of the same features. Just sitting here smiling.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Actually, I haven't been cancer free for a year. It was a year since I was told I was cancer free and it came back in about 2 months, that is if I was cured for such a short time. This was months before the rads, chemo and seed implants. The implants happened on the 29th of Jan . I have been pronounced cancer free for the past4 or 5 months tho, LOL So that counts big time.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Jim, Keep up the good spirits and stay well so we can enjoy your posts.
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: Oct 2008 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2008 Posts: 37 | EZ, Did the docs at James sort of miss the mark? thnx
Mike
dx scc right lateral tongue, fializing decision on where to get treated | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I was just rereadubg the posts in this one. Got me laughing and feeling good for sure, just to have you all as friends.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 |
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
| | |
Forums23 Topics18,166 Posts196,921 Members13,103 | Most Online458 Jan 16th, 2020 | | | |