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Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
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Good to see you again DM32ASA. I hate you are now dealing with this but the good news is there are a lot of advancements in this area. If your surgeon isn't concerned please find someone who is. Maybe have your dentist make some calls. Get on it fast and hard and get something done. I assume you are speaking of ORN.

Current trials are under way in Europe that combine a lot of things tried here. Things such as HBOT, Pentoxyfilline/tocopherol with a bisphosphanate are among things working. Even some studies by PerioSciences found improvements by accident when trying to help xerystomia.

You are in a state that understands this very well. Be your own advocate.

Best wishes.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Jan 2011
Posts: 168
Senior Member (100+ posts)
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Joined: Jan 2011
Posts: 168
I am so happy to have this forum. I am three years post-treatment, living with daily reminders of my cancer. My oncologist has also reminded me (when I tell him about side-effects) that I am alive after all. And I know that, but dry mouth, limited mouth opening, one paralyzed vocal chord, occasional thrush, more than occasional mouth sores…these things take their toll. This site was tremendously helpful to me when I was going through treatment, so I am certain it will help with these long-term issues. Thanks, Michelle


SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
Joined: Apr 2006
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Posts: 583
Thanks Uptown, Yes, I am trying to get more info. The concern here is the amount of radiation to jaw bone. At least that is what I am getting and scraping the bone to clean the area. Don't worry the one thing that this Cancer has taught me is to do my own thinking and research. My Dentist has consulted with another Cancer Dr. and they say to go in and clean.

Thanks for your input!


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
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Not knowing all they have already tried, I'm a bit concerned when I hear "scraping the bone". Hopefully you are seeing a dental oncologist and being treated through a major cancer center. ORN is something that needs to be treated correctly, diligently and by someone with experience. Without addressing the reduced blood flow in the area, any surgery can cause significant issues.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Aug 2013
Posts: 2
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Posts: 2
Like Brian, I'm a 15 year survivor and have all the issues that Brian spelled out ---- acute xerostomia, dysphasia, carotid artery stenosis from radiation induced scar tissue, esophageal stenosis, loss of ability to control the right side of my face and mouth, bario-reflex disfunction, sleep apnea from mucous secretions, plus a few more -- hearing loss and speech impairment.

Yes, there should be physician specialist/consultant support for us long-term survivors, practitioners who know what the issues are. This is sadly lacking. Over the course of my 15 year survival, I've had to fight to communicate my issues. At times I've had to find answers to my issues only through my own research. Some doctors were totally uninterested in hearing that my issues were related to the treatments to my cancer.

Like Brian, I am grateful to be alive. Best of health and happiness to everyone.

Joined: Apr 2006
Posts: 583
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Quick update.. I have been gone from the board. I am now heading into a jaw replacement on the right side. The new bone will come from my leg. I will get more details later. I will be going for pre-op Oct.23. Surgery Nov.3 I was wondering if anyone has anything they might want to share about this proceedure. I say hello to you all.

Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
Joined: Jun 2007
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Im very sorry to read you are having a major surgery coming up! A mandibulectomy can be a difficult surgery. Its very intricate and can take 8-12 hours in the OR. Recovery can also be quite long. Expect to be in the hospital at least one week with most patients being there 10 days to 2 weeks (depending on insurance). It will take a while to bounce back as you have not just your jaw to heal but also your leg and relearning to walk on it while it is impaired.

If you are going to get a trach ask for a possey muir valve to make speaking easier. Just like going into rads, eat now. Your ability to eat may be compromised for a while making eating your regular diet impossible.

Make sure to get your doc on board about pain meds. This can be a very painful surgery. Many nerves will be throbbing and you probably will be hurting pretty bad (at least I was). Best to ask for 2 different ones to be prescribed so you can flip/flop between them so you never have to wait until its "time" for the next dose. Neurontin or gabapentin works very well with this surgery as you probably will have some nerve pain.

Just remember its all just temporary. If the surgery needs to be adjusted down the road then you will have further reconstructive surgeries. Its necessary to wait for at least one year to allow all the swelling to go down and things to heal.

If at all possible try to have someone stay with you even if you are sleeping your days away. Every patient should have their own advocate to be there to speak up for them and make sure everything is ok.

Best wishes with everything!!!


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
Joined: Apr 2006
Posts: 583
"Above & Beyond" Member (500+ posts)
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Posts: 583
Thank you ChristineB. Hello to you as well.

Oh yes, I will make sure of the pain meds. I was guessing it would be very similar to what we all went through before.
I have the Gabapentin for nerve pain due to shingles. cry Thanks for the heads up on the Trach, there is some talk it may happen. I have extra lbs. on so ready for the loss. grin


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Sorry to hear about the shot jaw. It is a grim reminder that cancer treatment is extremely harsh on the body and many years later long term side effects can appear.

Hope all goes well; many here have gone through similar procedures and here to advise you.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Apr 2006
Posts: 583
"Above & Beyond" Member (500+ posts)
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Posts: 583
Thanks donfoo,

Yes it is a reminder. I often wonder how many more..?? I still count my blessing though. I am still here I have seen 2 grad kids graduate. I also was just told I will be a great grandmother in June!! How cool is that? It is all worth the pain. grin


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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