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#105158 10-14-2009 05:30 AM
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EzJim Offline OP
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It seems to me that ever since the ear tubes were put in my ears, that this pain has gotten so unbearable. The left one had to be replaced after 6 days because it was blocked with blood and whatever. Since then, the pain has increased and is on the good side on my face , jaw and throat. It's nice to give the right side a break from being painful, but this left side is getting to be very bad. I am wondering if the tubes can be the cause of this? This pain makes fun of pain meds. Any ideas anyone? I know that I need a biopsy there but I keep hearing about being put to sleep too many times. I tell them for every minute I am out that I get one extra month to live. 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
EzJim #105265 10-17-2009 07:13 AM
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Hi, everyone. I spoke to my brother on the phone last night, and he's in the hospital, at Wheeling Medical Park. The doctors all believe the cancer is back. He's in alot of pain. He said they have to do surgery on his stomach, to pull it down from behind his ribs, in order to put the feeding tube in him. There's supposed to be a family meeting with the doctors on Monday to see what the "game plan" is. He's in very good spirits. He said to tell all of you "hello" and that he has beaten this once before and he'll beat it again. I told him he will, too, with the Lord's help. He's a fighter with a strong constitution. I guess that runs in our family. So, please keep him in your prayers. I'll keep you all posted. Love to all of you, Jim's sister, Carol

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Hi Carol
sorry to hear your news and send our best wishes to Jim xx


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #105270 10-17-2009 10:32 AM
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Thanks, Liz. I'll give him the message tonight, when I talk to him, again. He called this morning and actually sounded really good. Carol

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Hi Carol:

I just found out about your brother on the forum, and just want to add my prayers for him to get through this. I'm fairly new on the forum, but have gotten loads of good info fom his posts, so tell him to hurry back so I can get more.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
julieann #105273 10-17-2009 01:10 PM
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So sorry to hear that EZJim is in the hospital and that the cancer is back. Thanks for posting, Carol. Please send our good wishes to him and we'll be looking for an update on Monday.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Carol,

Thank you for letting us know. I'll be adding Jim to my prayers, along with so many others. Its hard to know who is more stubborn and ornery, Jim or this cancer.

My money is on Jim.

- 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
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Hi Carol,
So sorry to hear about Jim and will wait to hear when you have met with the doctors. When you talk again please send my best and tell him I am missing my daily dose of jokes.
From one of his angels,
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

Gabe #105277 10-17-2009 02:57 PM
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Hi Carol,

Sorry to hear this about Jim. I agree with everyone else, he is tough and he will beat this. I will keep him in my prayers also.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Oh no. I feel like I just got kicked in the gut! Tell him that he will be sorely missed. I know Jim feels (and we agree) that one of his purposes in life is to be here for us. Tell him that "his angels" are holding him close and that we are there for HIM.

Sending all good thoughts and extra special prayers his way. I look forward to hearing the next update.

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)
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Carol,
Tell Jim that I am sending my best wishes to him and prayers "Upstairs" for his healthy return to the forums.


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.
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Malka #105285 10-17-2009 09:00 PM
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Hi Carol

Could you please pass my best wishes onto Jim also.

Thanks
Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Tell Jim we are all thinking of him and I know if anyone can beat this thing again, it's HIM.


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.
davidcpa #105293 10-18-2009 03:14 PM
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Our prayers are with EZJim, and together we'll give him the strength he needs to do this. Thank you, Carol.


Dana, Male, Age 52, DX 11/08
SCC right tonsil, Stage 3. RND, tonsilectomy, and PEG install done collectively 12/26/08, Cisplatin x3, IMRT x35. Post-TX PET clear 9/09, PEG removed 9/09, PEG stoma surgical repair 9/17/09. Dx renal cell carcinoma 11/09. Partial nephrectomy 01/10.
DanaOx #105295 10-18-2009 04:40 PM
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Hi Carol,
I was afraid that might be the case when he said the pain was so awful. Tell him hello and we miss him and to keep those angels on his shoulder. I hate this disease. Keep us posted.

Take care,
Eileen



----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #105306 10-18-2009 09:12 PM
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Carol, I will check daily for updates on our good friend Jim. That big, goofy, wise, strong, courageous, upbeat guy has become like a brother to us all, and please tell him that we are assaulting Heaven in his behalf! XOXO--Colleen


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!
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Hi Carol

Please send my love to Jim, he has given me such good advice & has such fighting spirit. Hope hes back on the forum soon.

Michelle


Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
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Carol,
I am so sorry to learn of this. Please tell Jim that we are all in his corner with prayers and best wishes. Also, I imagine this is very difficult on you. Try to stay strong and know that we are all praying for your strength also. Give him my love.
Donnarose


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Carol,
Sorry to hear about EZJim. Although we've never met, we all feel like we know him. Sending positive energy his way...and your way too. Looking forward to your updates.


Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09


Dianeox #105342 10-19-2009 12:03 PM
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I'm saddened by this news but look forward to Jim posting here soon.


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.
Deejer47 #105344 10-19-2009 12:23 PM
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I see Carol (Jim's sister) was on earlier - but no update...Grrrr... Hopefully she was printing off all of our good wishes to take to Jim for him to read.

Sure would be great to get an update!

An Impatient 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)
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Carol (or anybody),

Can you post the name and address of the hospital that Jim is in? And his last name also, as I know him only as EZJim (but maybe that is enough for them to track him down).

I would like to send him a card to cheer him up. Of course it has to be one that will make him laugh.

Please let him know we are praying for him!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Jims surname is Westling


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Deejer47 #105349 10-19-2009 01:50 PM
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Hi,everyone. Well, Jim went home today from the hospital. He said he would update all of you. So, I'll leave the details up to him. Thanks for the prayers and the love. Carol

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Hi Carol,

Please give Jim my heartfelt good wishes. I don't post very often anymore, but I check the forum frequently. He is such a stalwart, compassionate poster here and we can always count on his responses. Many of his posts have me laughing out loud and he has a kind word for everyone. Please let him know he has more prayers coming his way. Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #105368 10-19-2009 05:30 PM
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Hi all to all of our great family. I did come home today about 3 PM. Nothing has been settled about the pain except it is there. My ENT stopped by my room last nite somewhere near 10 PM. He told me the plans and what we will be doing. He went to the WVU game but stopped on his way home. He is like the other 2 Drs I have, unbelieveable. I will be evaluated by the Chemo Dr and have to see him until we hit the right solution to this pain. I was kept pretty much pain free for the 4 days in the hospital. After this we should know what will happen. Thanks for caring all and Carol thanks you too. I have heard of Hot Pants, seen some really hot ones LOL but never Hot Mouth . Now I know Hummmmmmm, Be careful all. Hot Pants OH YEAAAAA, but Hot Mouth stay away from. Luv ya all. Jim


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
EzJim #105369 10-19-2009 05:34 PM
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Donna,Geri, Cookie, Susan . There is the post and for now I wish it were 3 months down the road. Now I am going to bed nd get some sleep without a thermometer going down my throat. LOL But she was cute.


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
EzJim #105374 10-19-2009 06:41 PM
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Sleep tight friend.

With all of us behind you and with your amazing courage, I have no doubt that you beat the beast again.


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"
wilckdds #105375 10-19-2009 06:46 PM
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Hang in there Jim, always thinking you. Stay tough.


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
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Jim -- We are keeping you in our thoughts and prayers every day, buddy!!


Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
JeffL #105382 10-19-2009 07:48 PM
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Jim - thoughts and prayers for you.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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[quote=Carol Cunningham] He said to tell all of you "hello" and that he has beaten this once before and he'll beat it again. I told him he will, too, with the Lord's help. He's a fighter with a strong constitution. Love to all of you, Jim's sister, Carol [/quote]
Glad to see you back Jim and thanks to Carol for keeping us posted...we have all missed you and know you can beat it again.
Love
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

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Jim, I heard today about the cancer being back and I just wanted you to know that I will be thinking of you as you fight this battle again. You won last time and you will win again this time. You, like Christine, are an inspiration to so many people on here. Take care Jim.

Wendy x


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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Wow Jim, you are like those roly-poly toys we had as kids. You knock them down and they pop back up. Welcome back. Prayers still being sent for your complete recovery .


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.
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EZJim

Fantastic to see you posting again. Your endurance in face of adversity is outstanding. While none of this is easy, you almost make it look like that with your attitude. Of course all of us here know just how fracking hard it really is. Hope they get a handle on that pain. Hang in there brother
charm


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
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EZ Jim,

If anyone can beat this beast again it's you. I am in awe of your spirit and positive attitude. You are an inspiration to us all. You will be in my prayers....hang in there.

Hugs,

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
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Hi Jim,

Good to see you posting again. Exactly where is the cancer this time? Let us know what your treatment plan will be. Keep your positive attitude and hope you beat this again. Sending good vibes your way.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Eileen #105422 10-20-2009 04:57 PM
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Hi Jim,
Wishing you well and thinking of you, my fellow Ohio friend.
Ginny


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
MikeG #105428 10-20-2009 06:24 PM
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I have never said it was back for sure, it's just that the ENT and I agree that this is probably the problem with the pain and where it is from. Thank you all for the support you gve am and everyone else. Jim


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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Oh no, How did I miss this. Please let Jim know that he is in my thought and prayers. I just feel like my gut is turning upside down right now. He is an awesome encourager and i have learned a lot from him. I know hw qill beat this thing. He is a strong man. Praying for all of you.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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I am looking for a post from christine if there are any. She is my hero. THat is one tough lady . All of you ladys are tought tho , but Christine was out for twice as long as I was and coming back strong. Please let me know if she has posted anyone. Jim


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
EzJim #105452 10-21-2009 07:48 AM
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Jim, Christine posted on the ChristineB post. Here is her post:

Thanks for all the kind words. They mean alot to me

"Ive forgotten how bad you can feel battling cancer. Was struggling yesterday, thought I would go right back to the hospital. Saw my ENT who reassured me that Im doing very well. My son (Travis) ordered me home and in bed w/ the feeding pump running. Doing a little better now thanks to Travis."
_________________________
Christine
Stg 1 SCC 6/15/07 L chk & by L molar, age45
2x cispltn-35 rad end 9/27/07
Port/PEG, lost 65 lbs, trismus
4/4/08 recur L cheek
surg 4/16/08 clr marg
1/09 PEG/port out
85 HBO
3/4/09 teeth out
7/2/09 its back
8/24/09 PEG, trach, surg 2 remove L jaw/floor of mouth, neck dissection


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
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Thinking of you daily, Jim; hope that pain gets knocked down!


GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
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Thanks for the updstes you 2 and enjoy life as it was meant ... Jim


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
EzJim #105658 10-23-2009 03:01 PM
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I've missed a lot this week.

I'll be sure to keep you in my thoughts and prayers Jim.


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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Hi, Everyone. Just wanted to tell you Jim called me last night, and he's back in the hospital. He was in alot of pain. He said they're still trying to figure out where all the pain is coming from. He was feeling a little dizzy. We talked for quite some time. I could tell it was bothering him. I'll let you know when we find out anything. Love you all, Jim's sister Carol

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Thanks for the update Carol. Tell Jim to get better real quick because the OCF boards aren't the same without him. Send him my love from Australia and tell him I hope he's ok.
Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #105938 10-28-2009 08:08 AM
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Please tell Jimt hat we miss him and we too hope they can get a handle on this miserable pain. He is tough and determined, but this pain has been just more than any human should have to deal with. I am very much looking forward to his return home when they have the pain under control.

Give him a big hug from me - on behalf of "Jim's Angels"

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)
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Yup, the boards are not the same without him! Big hugs headed his way and I hope to see him back soon.


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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Prayers being sent his way.


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #105945 10-28-2009 10:09 AM
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Thanks for posting Carol. Tell Jim were thinking of him. It seems from recent posts that his pain had become beyond bearable even on meds and he has had terrible pain before. I do hope they find the cause this time.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
suemarie #105947 10-28-2009 10:16 AM
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Sending lots of love and best wishes to you Jim. we miss you already. Hurry back, it's not the same without you.
Hope you get that nasty pain under control
nancy


caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
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Thanks everyone. I'll give him all your messages tonight when I call him. Carol

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Hello Carol:

I hate to see that Jim is back in the hospital - I pray that he can get some relief from his pain, and also a solution for it. All the entries show how much he is admired - I personally enjoy reading his ideas, solutions, experiences, and knowledge of most forum issues. Please tell him I hope he returns soon.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Hi everyone. I just wanted to let you all know what is happening so far. Jim's son called me last night. The doctors found 2 more lesions in his mouth, I think he said. The jawbones are all deteriorated and he needs reconstructive surgery for that. In order to do that surgery, Jim needs a feeding tube. In order to put in the feeding tube, Jim has to have his stomach redone. They have to undo the surgery where they stretched his stomach up over the esophagus. Jim's having biopsies Friday. My sister and I are going down to the hospital tomorrow for this. Jim called last night and was in alot of pain. He's not sure what he's going to do about the surgeries until he finds out the results of the biopsies. He said to tell all of you hello. He misses chatting with all of you. I'll post on here Saturday morning whatever we find out. I forgot to tell you, if he decides to have the reconstructive surgery, he'll have to go to Ohio State University Hospital, in Columbus, OH. I'll talk to you all later. Love you all, Carol

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Carol,

Thanks for the upadate, although I wish it was better.

Please tell Jim we are all praying for him.



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"
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You tell Jim that he needs to hurry up and get back here and stop flirting with those nurses.


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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Lots of thoughts and prayers headed his way!


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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I agree with David..Tell him to stop flirting with the nurses and come back and flirt with US!! We love it...and him. We miss him when he isn't around. I'm praying that the biopsies don't show cancer. He's had more than his share of troubles!!
OXO--Colleen


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!
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Telling Jim to stop flirting would be about the same as telling him to stop breathing! He is a charmer = I have a feeling that some distant day, the Angels will have easily convinced St. Peter that his charming presence is needed in heaven. But, I do repeat - some DISTANT day. For now, we need him to get his butt back here. Tell him not to stop to collect a hug from every nurse on the way out - just tell him to get back here - and hopefully he will be painfree when he does.

Carol - please add my best wishes to those of all the other posters. Send him a hug from me.

Donna


Last edited by Pandora99; 10-29-2009 12:38 PM.

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)
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Carol,
Please let Jim know that he had BETTER get well and back here quickly. I think we have all been very worried about this last round of pain. Hopefully all will work oput well. He certainly has a big team rooting for him. Let him know he is in my prayers for a speedy and complete recovery. It is very good that Jim can rely on you. We all appreciate the efforts you make to keep us updated on him.


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.
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Carol,

Please give Jim a big hug from me too. He is such a kind and giving man. I always enjoy reading his posts. He will be in my prayers too. He's been through so much. I just don't understand why they can't get his pain under control....I will be anxiously awaiting to read your post on Saturday. You take care too.

Love,

Shelley


Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
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I'll give him all your messages tonight when I talk to him.
Carol

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Carol,
Please add my best wishes to the others.
Jim's Angel Gabriele from downunder.


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

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Carol,

Let Jim know that I have him in my prayers also, and I'm putting in a few extra prayers for those coeds at Ohio State. Poor girls just don't know whats coming at'em.

Kelly


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Kelly211 #106049 10-29-2009 08:15 PM
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Hi Carol,
Hoping you are holding up ok through all the unknowns. Sometimes its so hard and tiresome dealing with fear.
Please give Jim my love and tell him I hope he is finding comfort.
My prayers for all of you.
Love,
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Hi, everyone. We're heading for the hospital in just a little while. Thanks for the prayers. I believe God is in control, and not cancer. I gave Jim everyone's messages, and he just laughed. David, he knew it was you who said "stop chasing the nurses". lol
He cracked up laughing. I'll update all of you when we get back home. Love you, Carol

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That's because he and I think alike. I know what he's up to.


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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Men!!! Sheesh. Carol, thanks for updated - glad Jim had a laugh - I look forward to hearing more - give him lots of hugs from us.

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)
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Hi all. Well, Jim had the biopsies but we won't know anymore until Monday. They biopsied his tongue, again, they floor of his mouth, and a third place in the mouth, but I can't remember where it was. Anyway, Jim has lost alot of weight, and is in alot of pain. The doctor said he doesn't know he can stand the pain. The cause of the pain is either from the deteriorated jawbones, scar tissue, or from cancer. They don't know which is causing it. He is currently on a morphine drip, and the nurse was going to give him a pain shot after we left. He took a sip of water, and it literally tore him up. He said he sends his love to all of you and misses all of you, too. So, that's where it stands right now. I'll let you all know if anything else develops. Love you, Carol

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Carol,
It hurts to hear Jim is in such agony. It sure makes for a long weekend for all of you. I will continue praying for you all. Give my love to Jim.

Love, Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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Jim,

I'm sending all my healing power to you.


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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Why is it taking so long to get the biopsy results? Can't they put a priority on it? Since he can't have a peg now, can he get a nasal feeding tube? What's he getting for food? IV feeding? Since he is in so much pain, I would think these docs would push for the results as soon as possible.

Tell him we miss him and are thinking of him.

Eileen



----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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They haven't mentioned a nasal feeding tube, which we never even thought about. He is eating some food. It has to be soft enough where he can mash it up to get it down. We feel like you do. Why aren't they pushing for the results? I guess this where the rubber meets the road for our faith in God. Jim has a strong constitution and he's very bone-headed. It's a hereditary thing, not just with him but with his siblings, too. LOL We got it from our parents. lol He's a fighter. He keeps telling me he's not giving up, yet. Now, whether he says that because he thinks that's what I want to hear or not, I don't know. One thing I know, whatever my brother decides to do or not to do, I will support him. I love him. And this is hard to see him going through all of this. He's been one tough cookie all of his life, never afraid to tackle the seemingly impossible. Thanks for just being here for him as well as us, his family. Love to you all, Carol

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Carol,

Please send him my well wishes also! I know he is a fighter and will beat this again (whatever it is). I just wish he wasn't in so much pain.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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He is one tough cookie, for sure, but he has got to feel the love and strength of his real siblings and all us adopted siblings sending him strong good wishes for relief from pain soon and another battle won against this insideous cancer.


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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I feel so horrible for missing this post. Carol, please tell EZJIm that my prayers are with him and I am putting him on our churches orayer list as well. I miss him so much even though I have never met him. He was one of the first ones to be an encouragement to me when I joined the forum back May with my first round of this crap. Anyway, I am praying for you and his family as well. Keep us updated.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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Carol, Im so sorry to hear of Jims latest struggles. He called me about a week ago and told me how bad he was hurting. Im glad he has the pain under control.

Ive just gone thru the jaw reconstruction and its not an easy proceedure. He is strong minded and that will help him get thru this. Please feel free to ask me any questions about this proceedure you might have.

Im sorry I havent been online lately. Im recovering and typing inst very easy for me right now. Please give Jim my love and let him know I said it will be ok. If I can do it, he can too!


Christine
SCC 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 smile
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Carol,
I know this is hard on you to see your brother in so much pain. The waiting game we have to play with this disease really stinks. We're sending positive healing energy his way. Looking forward to seeing his posts again! You are both in our prayers.
Diane


Caregiver for Husband, Dana, age 52
DX 11/08, SCC right tonsil, Stage 3
RND, right tonsilectomy, Peg tube installed 12/08
Cisplatin X3, IMRT X35, last TX 3/09
CT scan 5/09 clear
PEG removed 8/27/09
1st PET scan clear 9/10/09
Minor surgery to repair PEG site 9/17/09


Dianeox #106205 11-01-2009 02:12 PM
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Carol,

Thanks for the updates but I'm so sorry that Jim and his family are going through so much. We really miss him here as he is always there for all of us. My thoughts and prayers are with all of you.

Sophie


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Oh, no!
I can't believe I missed this. Carol, please tell Jim that I'm thinking of him, I'm sending good vibes & prayers his way, & I am looking forward to when he's back on the OCF forum, making me laugh - and think - with his great messages. He's a fighter, & I wish him the best during this latest and difficult round.

love & hugs,
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!
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Well, he's home. He went to his daughter's house, but now, he's at his house. I'm sure he'll be on here soon. You just can't keep a good man down. lol Carol

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How is he doing?


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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I knew it, he only wanted a little vacation time with the nurses.


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.
davidcpa #106281 11-02-2009 07:00 PM
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EZ Jim we are thinking of you and praying for you. KATE


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #106282 11-02-2009 07:44 PM
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Jim-you are my inspiration to keep on truckin' no matter what!


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #106294 11-02-2009 11:48 PM
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Jim.....glad you are home. Now....come back here when you can lift a finger to type!! We miss you!!! XOXO


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!
August #106304 11-03-2009 06:58 AM
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I talked to him, yesterday. He was having alot of pain in his tongue, so we didn't talk very much. He said he hadn't heard anything about the biopsies, yet, but as soon as he does, he'll let me know. So, if he doesn't get back on here pretty soon, and tell you himself, I'll update you all. Have a blessed day. Carol

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Thanks Carol, I thought after your last post that we would have heard from him by now. Hopefully soon!


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.
davidcpa #106368 11-04-2009 07:18 AM
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Please let Jim know Im sending lots of prayers his way.


Christine
SCC 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 smile
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Posts: 238
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Carol,

I haven't spent much time on the forum lately and when I've been on, I've been checking on our beloved Christine. I am so sorry that I have not seen this thread until now. Please let Jim know I am sending prayers up to heaven for him along with all the positive vibes I can muster. He is a special person who was very helpful and supportive of me when my Mom first got this terrible STUFF! I feel sick reading about all the pain he is in and am so hoping that the cancer is not back. I, too, believe that God is the one in control and know he is watching over Jim, along with his angels. We miss him here and look forward to hearing about his biopsy results. Take care and I will be praying for your family as well.

Nancy T


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Nancy T #106400 11-04-2009 03:28 PM
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Miss you Jim and looking forward to hearing from you soon.
{{{xxx}}}} 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

Gabe #106412 11-04-2009 05:36 PM
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EZJim

How wonderful to see you posting again Big Guy and still giving comfort to the newbies!!!
We missed you big time here on the OCF board and I am so glad that you are back.
Keep on rocking brother
Charm


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
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Carol,

I am so sorry that Jim is having such a tough time now. I have really been inspired by his postings and his sense of humor. Please send him my good wishes. All my best to you and your family.

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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Carol,

I'm new to this site, and have never communicated with Jim. I want you (and him) to know that I have gotten comfort and hope just reading his posts to others, and am grateful he has been such a blessing to them (and, vicariously, me). I'm sure there are plenty of people out there just like me - just because you don't hear from them all doesn't mean there aren't scores who've been helped by him without ever being in contact with him.

Prayers and best wishes for you, Jim and the rest of your family.


44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
Pam M #106711 11-09-2009 12:11 PM
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Jim,

My thoughts are with you and can't wait to see you posting again.

Sophie


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Hi!
Jim and I are best mates and he has helped me through some of the toughest times of my life...with his typical style...jokes, fun and love. We have nicknames for each other (which I know he has told a few of you...we call each other ET..evil twins! This is due to our similar and silly sense of humour and the ironic. I know he has been through Hell...but we are ALL with you my friend...you have your own TEAM!!! haha Jim is AMAZING and I beleive he is an Angel walking this Earth to help others, as he has affected the lives of so very many of us. I love you ET...just thought I would surprise you with a message here! I hope you get it, either by reading it, or by another friend passing it on! I hope all of the treatments help..I will keep your spirits up and if it hurts to laugh out loud laugh on the inside. You have so many friends who really love you...so you get well. I add my Prayers to the many sent...and Prayer works. I think you are one fantastic human, and love you as family...Your ET!! Lyn xxxxxxxxxx
PS I am heading in to the hospital for my tongue reduction surgery today! EEEP! Eh! It cannot be worse and if it is...well I will just expect an extra dose of Jim Medicine (Laughter!)..So you have to be well for that...so THERE! HAH! ;o)


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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[quote=LynfromOz]we call each other ET..evil twins! This is due to our similar and silly sense of humour and the ironic. [/quote]

Lyn,
I about fell over when Jim said he had an ET! I was like OMG, there are two of you! LOL


Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
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