Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#113809 03-09-2010 02:37 PM
Joined: Jun 2007
Posts: 5,260
EzJim Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
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
EzJim #113822 03-09-2010 07:24 PM
Joined: Apr 2007
Posts: 794
"Above & Beyond" Member (500+ posts)
Offline
"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.
Donnarose #113825 03-09-2010 08:31 PM
Joined: Jun 2007
Posts: 5,260
EzJim Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
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
EzJim #113846 03-10-2010 07:31 AM
Joined: Sep 2009
Posts: 701
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"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
EzJim #113850 03-10-2010 09:59 AM
Joined: Jun 2009
Posts: 875
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jun 2009
Posts: 875
Hi Jim:

Six months before your next oncology appointment grin! 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 smile
julieann #113869 03-10-2010 03:55 PM
Joined: Jun 2007
Posts: 5,260
EzJim Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
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
EzJim #113871 03-10-2010 04:05 PM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
Offline
"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 wink 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

Gabe #113883 03-10-2010 06:55 PM
Joined: Jun 2007
Posts: 5,260
EzJim Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
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
EzJim #113893 03-10-2010 09:03 PM
Joined: Feb 2010
Posts: 235
Gold Member (200+ posts)
Offline
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!!!
SusanW #113895 03-10-2010 09:22 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
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.


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
Page 1 of 2 1 2

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,924
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5