| | Joined: Oct 2007 Posts: 71 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 71 | I am over 5 years out from my treatments and very thankful the cancer has not returned. In 2011 I was diagnosis with Osteoradionecrosis of the mandible. In Aug 2011 I went through 40 rounds of HBO and now the beginning of this year I had to do another 60 rounds. These last HBO treatments did not completely heal the sore in my mouth. Then soon after my bone starting to expose itself. So now I am in limbo since the HBO treatments are no longer working and my mandible shows no dead areas. My next step would be replacing dead areas of my mandible if it ever gets to that point. So now I am dealing with severe pain in my jaw and ear. I was taking Vicodin 5/500 that would help a little but my condition has now worsen. The pain management doctor put me on 15mg of time released Morphine which just made me feel like a zombie and didn't help the pain. I have tried Norco 10/325 which works ok and then I tried Percocet 5/325 that work ok. I am not one for pain meds and have used Salonpas pain patches that help the pain calm a little. So just wanted to see if anyone has found a pain medications that helps with this jaw/ear pain.
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'm sorry for you troubles, Tammy. Is there still a sore in the mouth. I heard of Pentoxifylline, with vitamin e, being used for unhealing ulcers. I didn't have what you have, but for my treatment, with neck, ear pain, I took oxycodene, and then added time released Fetynal patch, which come in strengths starting at 12.5. That took care of the pain for me. Good luck with everything.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Oct 2007 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 71 | Yes I have 2 sores in my mouth back side of my mouth. The HBO treatments didn't help the one sore then another one appeared. Thank you for the information it is so much appreciated. Take Care.
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
| | | | | 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 | Im not familiar with over the counter pain meds as being effective for this type of pain. Mouth pain can be the worst!!! Im surprised you arent on something stronger.
There is a medication more commonly used for seizures. It comes in liquid form too which makes things much easier for feeding tube users. Off the top of my head Im sorry but I cant remember the name of the medication other than gabadine which is close but not correct, it has 2 names one is the generic form. This medicine will help with nerve pain. Hopefully another member has a better memory than me and will recognize the medication Im talking about.
Hasnt your doc tried you on strong antibiotics along with the HBO? It may need something like that to get it work. Ive gone thru this and I know how awful it can be. The pain can be excruciating! What future plans do you have to fix this problem? Im hoping you arent going to watch and wait on this. It doesnt sound like it will ever be better so you may be facing a mandibulectomy to remove the bad pieces. This doesnt have to be a huge surgery, t depends on how big of an area is affected. Ive had just a couple shards of jawbone removed which wasnt a big deal. Sometimes the doc can graph other tissue over the area. Please seek out a second or even third opinion on this before you make a commitment. But please have it taken care of as it will only get worse and more painful.
Good luck!!!!
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: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 60 |
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Lyrica also is for nerve pain.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | I was prescribed Lyrica and Tramadol for extreme nerve pain and was pain free within five days. I took Nuerontin during my treatment but it wasn't as effective.
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Neurontin is gabapentin, I didn't find much help for my neuropathy with it, and It knocked me out, and felt high lol. I switched to lyrica, and like it better.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Nov 2013 Posts: 3 Member | | Member
Joined: Nov 2013 Posts: 3 | Hi all
Just want to clarify few points
HBO is a great treatment if followed and used properly but again remember
It helps to prevent ORN or prevents the progression
It dose not treat dead bone, if u have dead bone u need surgery!
Exposed bone is not painful , it's painful only when it get infected
Treatment will depend on the stage of the ORN and the medical status of the patient
Please feel free to ask me any question | | | | | 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 | ORN, this thread is old, please use care and look at the dates when replying to posts.
As a patient who has experienced an exposed on several occasions, I have to respectfully disagree with your statement [quote]Exposed bone is not painful , it's painful only when it get infected.[/quote] I have had this happen a few times without an infection and it was excruciating pain.
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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