| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Well, I saw my Oncologist this afternoon and he checked me good. He told me I might not have lost my hair, but I sure do have some severe radiation burns on my tongue, under it, throughout my mouth and into my throat. This seems to be getting worse as time goes on. He was awfully glad I was smart enough to tell the Dr at West Virginia University Hosp that I wasn't going to let him cut me up. He said that was the best decision I have made. He offered me more pain pills but I declined. Now I have 6 months before the next appt. I told him about the trouble I have eating and he said it will continue this way for a long time. ZOWEEEEEEEEEEEE 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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hey Jim, So happy to hear you are doing well. Sorry about the pain from tx's; my mom is sitting beside me in awful pain, in tears. they did a needle biospy under her chin, left jaw and it is now causing her such grief, and draining-oozing like. She is so disgusted and hasn't had a day of being pain free in over 3 years...hard to witness. she's so down. any suggestions?
love, D
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I wish I did Donna,especially since it's your mom. That is a sensitive area and has to hurt. It's been 3 years for me too but I am probably younger then she is and can take pain I still remember the needle biopsy I had below my right ear. That damn thing hurt like all get out so I know she has to be miserable. Give her a big hug but watch her chin . Give her one for me too will ya?
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 | Donna, Pain can be so maddening. Can you keep calling her Dr and demand something stronger? No one should be in the kind of pain your Mom is in.
Jim, I feel so bad that you still have pain issues, too. Also, very glad to read in another post that you are considering getting some pain relief from your Dr. If it makes your life easier, then do it.
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 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Jim: Six months before your next oncology appointment ! Aren't those the most wonderful words you can hear? Congratulations.
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: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Thank you both and yes they are words to make one smile. But this pain is unyielding and hurts 24/7. I'm waiting for a call from the Dr now.
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: 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 | Hope you get the call soon Jim. When I first read your post and you wrote that you declined the pain meds my first thought was you should have accepted them even if you were not going to take them. That's what I have done in the past and have a supply of "just in case" stuff there. Makes me feel better just knowing it is there if needed. Sounds like I am preaching doesn't it Don't mean to..I guess it is just one of those hindsight is wonderful moments!
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I need someone to chew my butt out for being a hrad head. 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 2010 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | Jim, I'm so sorry to hear that you're experiencing such discomfort. I was actually surprised when I read this. I haven't been around here long but I noticed right away that you are always one of the first to have a kind, encouraging word for someone else. And what a sense of humor. I often find myself smiling when I read your words. And this while you are in pain??? Wow.
I hope you choose to at least get the pain killers to have on hand. At my counseling center we have quite a few folks addicted to prescription meds. So,I end up at a lot of conferences on pain management. I think there has been some good research out there that shows that appropriately taking pain medication when needed can speed healing. I hope you get some relief very soon.
And Donna, I hope the same for your mom. I hate seeing my husband in pain. it's such a helpless feeling,isn't it???
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | 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 | Your appointment must have gone very well if they dont want you back for 6 months. Congrats!!!! If you are hurting, why turn down the extra pain meds? Nobody should be in so much pain. 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 | | |
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