| 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 | 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
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | 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.
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | 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 | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | 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.
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | 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
| | | | 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 | 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
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | 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)
| | | | 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 | 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)
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | 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. Support OCF
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | 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
| | | | 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 | 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.
| | | | Joined: Jun 2009 Posts: 24 Member | Member Joined: Jun 2009 Posts: 24 | 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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | 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!
| | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Sep 2009 Posts: 31 | 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).
| | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | 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.
| | | | Joined: Jun 2009 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2009 Posts: 51 | 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
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | 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.
| | | | 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 | 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)
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | 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)
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 |
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.
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Dec 2008 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Dec 2008 Posts: 126 | 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
| | | | 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 | 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
| | | | 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 | 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
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | 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"
| | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 475 | 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!
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | 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!!
| | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 216 | 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
| | | | 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 | [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
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | 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.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | 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. Support OCF
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | 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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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
| | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | 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.
| | | | 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 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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | 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
| | | | 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 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
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | 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
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | 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
| | | | 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 | 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
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | 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
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | 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.
| | | | 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 | 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)
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | 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
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | 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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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
| | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2009 Posts: 90 | 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
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | Thanks everyone. I'll give him all your messages tonight when I call him. Carol | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | 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 | | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | 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"
| | | | 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 | 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.
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | 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
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | 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!
| | | | 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 | 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)
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | 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. Support OCF
| | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | 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.
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | I'll give him all your messages tonight when I talk to him. Carol | | | | 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 | 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
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | 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
| | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | 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.
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | 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 | 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.
| | | | 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 | 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)
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | 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.
| | | | 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 | 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.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | 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
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | 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)
| | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2006 Posts: 388 | 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)
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | 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
| | | | 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 | 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! 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 2009 Posts: 51 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jun 2009 Posts: 51 | 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
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | 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
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | 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!
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 |
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
| | | | 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 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.
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | 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!!!
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | 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.
| | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | 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!
| | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2008 Posts: 38 | 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 | | | | 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 | 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.
| | | | 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 | Please let Jim know Im sending lots of prayers his way. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | 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. | | | | 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 | 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
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | 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
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | 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
| | | | Joined: Nov 2009 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 92 | 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
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | 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
| | | | Joined: Dec 2007 Posts: 46 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Dec 2007 Posts: 46 | 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.
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | [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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