| | Joined: Dec 2009 Posts: 6 Member |  Member
Joined: Dec 2009 Posts: 6 | EZ Jim,
Do you have pain? What is your course of treatment? I know that my husband faces a long journey. I am so afraid of what is ahead as eventually he will have to endure chemo for CLL...probably by end of next year. He doesn't even have a doctor that is taking charge of him...it's all done thru the various specialists who, I doubt, even talk to each other about him. Yes, we have an HMO...but we've been very happy with the care he's received up to now. I feel we are in limbo with no one really looking out for him. I am going to send a letter to his radiation onc.. Right now he is under the care of the UCLA dental school for his jaw. They work with HN cancer patients referred by our HMO.
Siouxbee
Husband diagnosied in 06/2003 (57 yrs old)with SCC base of tongue T1N2b. In 06/2003 started chemoradiation (35 radiation + 3 chemo). In Nov. 2003 had right neck dissection. No cancer recurrence but currently suffering from osteonecrosis.
| | | | | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | a doc told me that the effects of radiation on jaw bone and gums accumulates with time....that is,it gets progressively worse. HBO treatments give a reset, however the deterioration continues. he said i would have a 3-5 yr window for dental treatments after HBO. then he would recommend booster HBO treatment before\during later treatments.
xrays show a shadows under my teeth to be pulled. the doc says this is probably infection.. however he will do a biopsy to ensure that its not a dead bone issue. we will deal with that as we proceed.
i have no idea if what he said agrees with mainstream treatment. i would like to know more about this topic... and appreciate all comments.
cu,
larryb
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
| | | | | 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 | Hi Larry, I may be able to help you with HBO. Ive done 85 of them. I cant say enough good things about HBO. It made me feel like I was a new woman, like before I got sick. There have been many threads about HBO. You must type it out or you wont get any results. Here is some info that should help you.... http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=81566#Post81566
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: Apr 2003 Posts: 136 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | hi ChristineB,
thanks for the link and for the suggestion to search using hyperbaric.. i didn't search because my spelling can be terrible, however your link had the word spelled out - so i copied.
i look forward to the treatment and hope that it cures the recurring problem that i've been having with infections.
cu,
larryb
by the way, my siter was a ChristineB till she got married. her birthday is Christmas Eve. reminds me of my buddy at work, HosA,,,, not HosB.. cu, larryb enough already.
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
| | | | | Joined: Jan 2008 Posts: 29 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 29 | It's been a while since I posted but have a lot of experience with HBOT.In 2004 I had to have two teeth removed from lower jaw #18 and #29 and had 30 dives. Every thing went well and healed properly.Four years later,I started getting receding/bleeding gums on my lower right teeth and had to remove #26,#27,#28 and also had an infection.I had significant oral surgery to get it all cleaned out and had what looked and felt like the Grand Canyon in my mouth with exposed jaw bone.I did 60 dives (the most allowed)and after 6 months it completely healed over.I had vision problems from that many dives. One eye finally got back to normal but the other one didn't.The boredom and time commitment are the two biggest
issues with the HBOT.
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: Apr 2003 Posts: 136 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | hey fogelbergfan,
i've been wondering about my ability to retain other teeth due to potential stuff like you had develop... i would hate to pull good teeth now, yet i wonder if i'm fighting a loosing battle and just setting myself up for more dental problems... and you bring the vision problems closer to home too.
based upon your experience, would you recommend that someone like me put priority into doing more dental work sooner -rather than waiting and hoping?
i'm glad that you got some vision back...
thanks for your input. it is invaluable to hear.
happy holidays..
cu,
larryb
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
| | | | | Joined: Nov 2005 Posts: 7 Member | | Member
Joined: Nov 2005 Posts: 7 | Orthoradionecrosis of the jaw I think is the name for the "dead" bone. It is a serious problem because it interferes with the healing of any dental procedure. My oral surgeon has said to wait until I have a real problem and then he would probably treat with root canals. Watch out for any other medications that you might get. Especially medications for osteoporosis, most of which are bisphosphinates wich cause osteonecrosis of the jaw so it will make the problem worse or vastly increase the possibility of haveing it. BTW, to my knowledge necrosis of the jaw is not diagnosable from x-rays.Clark
DG squaomous cell carcinoma in neck tongue and palate 4/98;
T4N2CMO
bi.lat. neck disect. 7/98;
Max dose Rad 8/98 to 9/98. H&N Cancer free.
G-tube placed same time as disection. Changed to button after 2 years.DynaWrite
Severe trismus and unable to speak clearly. Use an iPad .
| | | | | Joined: Nov 2005 Posts: 7 Member | | Member
Joined: Nov 2005 Posts: 7 | forgot to ad that I did not have the option of HBO because I was not insured for many years after my surgery and radiation. By the time I got o the VA 3 years ago it was too late.
DG squaomous cell carcinoma in neck tongue and palate 4/98;
T4N2CMO
bi.lat. neck disect. 7/98;
Max dose Rad 8/98 to 9/98. H&N Cancer free.
G-tube placed same time as disection. Changed to button after 2 years.DynaWrite
Severe trismus and unable to speak clearly. Use an iPad .
| | | | | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | hey Clark,
thanks for the info. hope you are doing better now.
my dentist is planning to do biopsies to asses if i have orthoradionecrosis of the jaw and i think to see if there is any infection. i've been on anti-biotics for several weeks now and seem to be responding very well.
cu,
larryb
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
| | | | | Joined: Jan 2008 Posts: 29 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2008 Posts: 29 | My oral surgeon has me use Peridex rinse twice a day.It kills certain bacteria that can cause infections. He said to plan on me using it the rest of my life......so that's a good 50 years or more......thank the Lord it's only $5.00 in generic form.
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.
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