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Old 01-09-2008, 11:35 AM   #8
dchips1
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Join Date: May 2006
Location: Mesa, Az
Posts: 219
my experience

It is interesting how no one seems to know much about the osteo or osteoradionecrosis, (medical people) . The biggest thing was for me to keep caling and asking around town, not alot of docs/dentist have dealt with it. My scrape to the lower inside of my gums progressed (04/07 initial injury) to in 9/07 I had huge peridontal pockets (they say) to where you could just flap back gum tissue off the 2-3 back molars . At first they thought it was an abcess, because it was a white pimple area, no pus would come out then the white would go away and the gum could be flapped away. I did have a lot of pain under my jaw and you could feel a lump under my jaw and they would put me on antibiotics to calm down the outside. The hyperbaric oxygen was done at a hospital they have 2 chambers which are individual chambers. this allows for customizing and I like better then a group chamber, I did 20 "dives" slept most of the time or watched movies, within the first 2 weeks my mouth started to heal, this 5months since it started, I had tried almost anything and now I have had even another root canal then 10 more dives, my teeth cleaned and not alot of pain except for my TMJ joints, because my teeth have all shifted, and I clinch them at night. I was told if anymore dental procedures then you do 10 follow up dives. They have seen people with extractions heal up after O2 dives. As far as the stroke hx the medically eval you before you go in, they actually reccomend it post WBR rads and also use for Cerebral palsy. I went to Chandler Regional Medical center in Chandler, Az the tech there is DAN he was a "jaw" saver, he answered all my questions and reffered me to web sites, because everyone I talked too hadn't really messed with hyberbarics, nor thought it would help, but I pursued it and the insurance company paid for it because of the "radio" radiation component of the osteonecrosis. Medicare will pay for it with radiation hx. Sorry so long and scattered but ask anything if I have forgotten . Darita
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dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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