#91905 03-16-2009 06:41 PM | 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 was the 1st year anniv. of my haing gone home from the hospital from having radiation seed implants. I sure never forgot them just forgot to post. Hell, this mouth feels as bad as it did 1 yr ago too. I would bet it never improves like the rest of the surgery after effects haven't. I hurt from right throat area uo thru my throat into my mouth , into my ear and musnt't leave out the tongue and the floor of my nouth in that area too. I was told scar tissue for the tongue and floor about 3 months or so ago. I beti find out real soon
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 | As of right now, the lower right part of my mouth and into my ear and right throat are hurting so bad it has my eyes watering.I hate to take any more pain meds and will try to fight the pain, Enough constipation has gone on.
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!
On the upside of all that horrific pain, you are here to share this news with us! I think I can appreciate your pain, my mom is going through very much the same issues. It's ungodly te amount of discomfort she still feels. Do you have any lidocaine? or, magic mouthwash? I noticed for my mom sometimes the magic stuff in a spray bottle seemed to just mist over the area and bring her a soothing relief...other times nothing touches the pain. Been thinking about you, how are you?
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Jim,
My mom just told me to tell you to try to get a bottle of the sodium chloride from your doctor, she said having it ready to use is better for her as she doesn't have to worry about adding too much salt.
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: 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 | Jim:
Sorry to hear you are still having these problems. Hoping for better days ahead for you.
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 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | I am curious if any follow up studies have been done regarding brachytherapy and quality of life issues. It seems to me that this is way too much pain to be reasonable. Of course the alternative is not good either, but why not other methods of radiation if this is the outcome???
Sorry, but chronic pain is so debilitating and I feel for Jim and Donna's mom and anyone else enduring this.
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: 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 Magic mouth wash, last script for it, Percocet. Biotene wash xanax and I have had the sodium chloride. I see the Dr the 25tfh. that is the Oncologist and I will discuss this at length with him if i have to, He is always willing to listen and write scrips. I'm just sick ofhurting so much. It seem to be nonstop now . I did have a lot of fairly good months tho.
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 | Deb, no follow up studies have been done because I told them I would rather try to go it like this. I just might yell Uncle soon tho.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
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