| | 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 | My mouth is still driving me crazy and hurting like hell has built it's biggest fire in it. I am down to 152 and it seems I am losing about a lb a day right now. Everything hurts and burns . It at times feels like the bone is disintagrating and feels like I have chips floating between my cheek and gums. This evening as I was force feeding, I put my finger inside and felt for the 1st time. The bone has a very sharp edge and that is where the pain on the left lower jaw bone is. The right side of my tongue muscle has a nice size nasty hurting lump to divide the pain to both left and right. I will call my Oncologist and ENT after I get moved this weekend, but this crap sure lets you know you are still alive. Maybe a 3rd set of teeth and growing a new right side of my tongue?? LOL I wish. Just airing it out all but know I will catch it from some of you. Thanks for listening.
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: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Jim,
I haven't been on here in a while. I am so sorry that you are having so much pain. Are you on any medications for your discomfort? I thought that I had read a while back that you were on methadone. Is that not working? You are a fighter and I know you are not shy about calling and demanding to see the ENT and ONC. Good luck with your move and I hope you get relief from the pain very soon.
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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Sorry to hear you are still in so much pain. After having my teeth removed last year, for months I still had tiny pieces of bones in my gums. Those little shards were sharp and caused intense pain. I would go to the doc to have him remove the pieces and it would instantly feel better. Maybe thats all it is, a tiny piece of bone or tooth that has worked itself up to the surface and needs to be taken out. Take those meds and call your doc on Monday.
Good luck with your move and I hope you feel better soon.
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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Hi Jim
Hope you are ok. Just wanted you to know we are thinking of you over here in Australia. Take care.
Wendy xx
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: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Hi Jim,
Sorry for the pain. Please let us know what the doc says. My dentist has told me many times that small aggravations in the mouth feel huge. Amen to that! Good luck to you.
mark
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Jim: Sure hate you're having all that pain - by now you should have already been to the doctor, so let us know what's going on. What a horrible time for something to act up - just when you're trying to get moved. I hope all the kids are helping  They better be! We've also sold our house in the country and will be moving by Aug 15 into town. The heat here drains you, and I'm not looking forward to moving; haven't packed a thing at all like you did right away. Take care and write after you see the doctor. julieann 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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Jim - so sorry to read about this, especially after all you've been through. My thoughts are with you and I hope you get some relief soon!
D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | 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 haven't seen my Drs yet and even missed an Appt. today with my Cardiologist. I betthey tried to call me but my phone is long gone for the laat 3 days. Old ma bell shut it off 2 days early.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Jim,
Rottne news about your pain.
Please tell your docs that qwe are counting on your getting over this latesst problem.
Ooops - bad typing must be contagious!! Actually not, I am a lousy typist, I normally go back and correct every third word. I would never want to be accused of taking the typo crown from you.
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 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hey Jim,
So sorry you are having such a hard time of it especially with the move. Do you have a mobile that you can contact the doctors on the try and get new appointments?
Time to call on all your Angels.
Love from one of them.
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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