Previous Thread
Next Thread
Print Thread
Joined: Sep 2015
Posts: 1
jewells Offline OP
Member
OP Offline
Member

Joined: Sep 2015
Posts: 1
Um, wow. In desperation we turned to this site for some support and insight. Indeed there is plenty here. For a year now my love has been fighting the good fight of osteoradionecrosis 8 years post cancer surgery. It presented as fistulas on the cheek. We spent the next 4 months getting shuffled from Dr. to Dr. Then in Feb. his jaw fractured IN HIS SLEEP! Back to the cancer surgeon. He had surgery 1-to "clean out infection" followed by 40 HBO dives. Surgery 2-free flap surgery to replace mandible (surg 1 failed)in April. Surgery 3-still infected, remove titanium strap from Surg 2 in Aug. Surgeon gave him clean slate in Aug. 1 month post surg. Today, he is still weeping from surgery site. He was on augmentin from 9/14 to 5/15. Will this infection ever, ever clear up? His frustration level is so high. His self-esteem so low. He wants nothing to do with doctors right now. I don't know what to offer him in way of support anymore. Any suggestions appreciated.


8 yr survivor and loving spouse CG
struggle continues
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
Welcome to OCF, jewells. Im sorry to hear about all the complications your loved one has endured. The frustration is completely understandable. Ive had this surgery myself and I know its not an easy one at all. I needed 8 months of IV antibiotics to help heel the surgical site and battle infections, plus way too many HBO dives to even count anymore. If he is on augmentin for so long and its not working then maybe a stronger antibiotic or a different one would help.

First, if radiation was given as a treatment for OC then thats probably why the HBO was needed and also why there are heeling issues. Im sure his doctors are doing their very best to help. So often they are at a loss when heeling is impaired.

Is there a wound specialist department at the treatment center? What about a therapist who treats cancer patients? Depression is very common among oral cancer patients, many take anxiety meds (caregivers too). He can also join our group and we can help give him info and support. Im sure he probably feels so alone right now. Knowing there are many others out there like himself can be very reassuring. Ive been where he is and Im now 6+ years later and Im doing very well. Recovery from this type of major surgery is a long road. I felt like I would never recover and be able to have any kind of life anymore. It took me well over a year post surgery to be ok again.

Since you mentioned being bounced from doctor to doctor, does this mean he is not being treated at a comprehensive cancer center? If its an option that he is able to do, then I would suggest seeking out further treatment at one. Sometimes going to the top CCCs is the only place to go when there are complications. They treat hundreds of these types of unusual cases and have the latest methods to help when problems occur. I understand his frustration but it cant hurt to at least give it a try.

Best wishes with everything.

List of CCCs



PS... As a caregiver, take some time for yourself too. Being a caregiver is a difficult job. Be kind to yourself.


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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Okay - do whatever you have to medically - that is first and foremost.

THEN...

Up his protein, and iron, and add some supplements.

I say this because diet is SUPER IMPORTANT.

I imagine he isn't eating as well or as healthfully as he should be. This is probably due to what he is going through with regards to treatment and the fistulas etc...

try having him down a couple of high powered protein shakes daily. Limit sugar, and up his iron intake.

Manuka honey is natures peroxide. After each meal he needs to brush his teeth (assuming he has some) maybe waterpik to clear out any gunk hiding in his mouth, and then maybe swish with manuka. (by eating I include drinking if he's on a liquid diet)

wound healing is tied to immunity, and this is tied to diet. Also cleanliness - Bacteria, builds after eating or ingesting anything. minimize the bacteria, minimize the growth of infection.


Hope this helps... hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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
Topics18,166
Posts196,921
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