| Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Hi Everyone
I'm wondering if anyone can tell me what happens with an exposed jawbone. Steve's gotten this as a side effect of his radiation treatment. It's exposed in the bottom left hand side of his gums. We don't know too much yet except we have to see a maxillofacial surgeon but as you guys know, I like to get a bit of info first on what we can expect. I've searched high and low on here and on the internet but can't find any information that I don't need a degree to understand. Has anyone had this after treatment and if so what happens next?
On a good note though it isn't causing him any pain and I'm hoping it stays that way.
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | May not be painful now, but it will become a site for chronic infections if it isn't dealt with, things wil get much worse, and those can be dangerous. Do a search for hyperbaric oxygen treatments, or O2 dives, and you will likely find threads where people have discussed this healing issue.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Thanks Brian. Last night after posting this I did a bit of digging on this site. I will definitely take your advise and look up the hbo dives and have a good read on how it is dealt with from a patients perspective.
So far he has no pain but I assumed that wouldn't always stay the case. He's been given a couple of courses of antibiotics to take as he was a bit sore (when the doctor prodded) around his remaining teeth on that side and has a slight bit of swelling as well. This seems to be linked to the exposed bone I think.
Thanks for your help. Time for me to begin learning.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I had both an exposed jaw bone and Osteoradio Necrosis (ORN) at the primary site of my cancer.
If the bone is just exposed and there isn't a sign of ORN then it's what Brian said, the site can be a constant infection risk until it's healed and HBO (hyperbaric tx) will help that heal. I've also been told that a skin graft can be used to help the issue if it's just exposed.
If there is ORN and it can't be solved by HBO then I believe surgery is the only option.
HBO is easy...the hardest part of it is fighting boredom...I can only sit and watch tv or movies for so long. I was lucky and had a great team that kept good conversation on hand.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I went into radiation with small places of exposed jawbone where the surgeon had scaped off gum to do biopsies in an attempt to find the primary. Because my lower jaw is so small, my dry tongue kept rubbing them and keeping them open. I also had small bone spurs that kept popping out through the lower gums on the inside. An oral surgeon checked me every two weeks, scraped off the spurs and removed any excess bone that was growing so the gum could heal. Took about 6 months and I managed to not need the HBO treatments. These were not ORN and were not painful but could be sore at times. Have the oral surgeon keep an eye on them.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jan 2008 Posts: 29 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2008 Posts: 29 | Wendy - HBOT is a good treatment for anybody thats had high doses of radiation....Radiation can destroy many of the very small blood vessels that help you heal.HBOT will help you regrow that blood supply and help you heal.I've had 90 HBOT dives total. Thirty in 2004 and sixty in 2007....the maximum is 60 in a row Monday-Friday.It's VERY expensive and boring...you need great health insurance and patience.
32 Year Oral Cancer Survivor.CURED!!Right neck dissection.5000 rads plus radium needle implants in the tongue.Also had alternative treatment in Germany from Dr. Hans Neiper in 1982.The combination of ALL the treatments cured me. | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | For those in Australia who don't have Private Health Insurance, HBO treatments are covered by Medicare so there are no out of pocket expenses at all. Your surgeon can authorise the treatments.
I have private Health insurance that covered my HBO treatments, so either way we are very lucky that we don't have to worry about that expense.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | OP "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Glad to hear that Karen. Steve and I don't have private health insurance so will be using medicare for this if it's needed. Must admit as much as I hear people whinge about the Australian medical system, it's actually pretty good.
thanks for your advise everyone. it's been very helpful and has put my mind at ease alot.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I have exposed bone on both sides and they are pieces of dead bone. I hope your man doesn't end up with this. NOw like others here have had, they want to take all of my lower jaw and what'seft of my tongue. I don't think I will let them.I feel good eveywhere on this old body but my mouth and throat area. I will live with this apin and go 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: May 2012 Posts: 5 Member | Member Joined: May 2012 Posts: 5 | Hi I had the samething but i can't open my mouth to eat. I need help on what all I can do. | | |
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