| Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Worried about that boy! If anyone has heard anything, please let me know. Thanks.
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 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 | Yeah, it's not like him to keep so quiet.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | I agree....he's on a lot. I don't know anything
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | I was going to post the same question this am...checked his last post as well...it has been 5.5 days since it. Unlike Jim.
No word from his sister Carol either and I saw that BarbT was on but did not post a couple of days ago. Hmmmm???
Has anyone tried to PM him or Carol??
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I e mailed Carol at the same time that I posted this, and got a reply this morning. I hope she doesn't mind me sharing part of her e mail
"He had a PET Scan on Monday, but evidentally he hasn't heard anything on it, or he would have let me know. His jawbones are deteriorated, but the one doctor said he's going to try to graft some flesh where it's really bad, and see if that won't give him relief from the pain. There was no cancer in his mouth, just alot of scar tissue"
Apparently one physician is going to try to do a graft to alleviate some of the extreme pain.
After hearing from Carol, I think it must be the pain and the pain meds that are keeping him away - but hope he finds his way back to the boards soon. We miss him!!!
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I've been worried about it too. He only made one post that day which is so unlike him. I do hope he is able to get proper nutrition down so he is not losing a lot of weight. That reverse operation they want to do on his esophagus has me scared also. Sounds very risky to me and how would they solve the original problem?
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Thank you for the update Donna....I think you are right. It must be the pain meds that are keeping him in bed. Although I still feel like it's a little unlike him...
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | 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 | Knowing Jim like we all do, i.e., only wild horses could keep him from posting, those must be some pretty big wild horses!~!~!
Donna, you're probably correct on the pain med theory. That's the only thing that makes any sense.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | He forwarded a joke on the 10th with no information as to his health. I am in his mailing list (around 40 names and some I recognise from OCF) but other than that I have not heard anything. I will send an email shortly. 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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | I just hung up with Jim; although he sounds a bit stiff and frozen like, his spirits are not broken! He said he needs a few more days and will be on and posting again soon. I got the impression it bothers him to sit at the computer. He really surprised me, he truly sounded chipper! He's just proof that you can take the man out of the fight, but you can't take the fight out of the man! And- although his tongue feels frozen and he barely has any saliva at this time, you can still hear his charming southern drawllll....such a gentleman! Just thought I would let you all know that he's hanging in there. Stay strong Jim!! We all love you!! 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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