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#108213 12-03-2009 07:38 PM
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larryfb Offline OP
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hi folks,

radiation and chemo in '01.. all routine since then. i've been surprised by the long recovery road that just keeps getting better. recently i've started producing notably more saliva.. yahoo!

i finally learned that mouthwash with hydrogen peroxide works better for me than prescription meds for keeping thrush under control.

despite my best efforts of 4/yr teeth cleaning and brushing\rinsing umteen times per day, i've got receding gums that are to the point where food gets trapped and causes infection...

so 2 lower teeth (19 and 30) are coming out... today i met with the hyperbaric folks and got scheduled for dives in Jan.

overall i am glad to have been able to keep my teeth this long and the docs tell me i'm doing good... so dive and pull.. and get some man made replacements.

i'm open to any tips or advice.

best holiday wishes to everyone.
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.
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Wow, Tx in 01 and still seeing saliva improvements!! That should give all of us hope.

Why don't you update your Signature Line (like mine) so that everyone reading your posts will know your history each time you comment.

Thanks for the update!!


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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larryfb Offline OP
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hi Dave,

the saliva thing has been a surprise to me. for years i took 3 or 4 salagan pills each day. about 18 months ago, my mouth was wet enough that i reduced the intake to 1/d. things were still good and seemed to improve. recently i upped the dosage to 2 or 3/d. i got a big boost. .. enough so that i can now go a few hours without my water bottle. i've even left home without it and not panicked.

my plan is to increase\decrease the dosage on time scales of a couple of months to see what happens. now i can frequently open my mouth and see fluid spanning from the roof to my tongue.

i still can't eat most thing without drinking something.. but i really do sense a continued improvement.

this seems contrary to what i've read and been told about saliva improvement after treatment... i switched to generic salagen and found no noticeable difference.


'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.
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Hi Larry,
My husband is also experiencing problems with tooth 30 thanks to osteonecrosis. Oral surgeon wants to pull it out but he must have HBO treatments first. Talked to his radiation oncologist who had us meet with UCLA dentist who works with H&N patients on teeth problems. Discussed HBO, but he recommended a special root canal procedure. Husband spent 10 hours in dentist chair enduring procedure. Pain eased a little for a few days, but it is now back big time. If I may ask, will your medical insurance cover the HBO? We lost our dental insurance Dec 1. I am hoping he can take HBO as he has high blood pressure and a blockage in his neck on side of dissection. They cannot operate as veins are too close to the skin, so he is now on medication. This is a good man who has suffered so much since diagnosis in 2003. In 2006 he was diagnosed with CLL, but he is still in stage 0. Dr. figures he may have to start chemo late next year. We are thankful for every day we have together.

I wish you the very best of luck with your HBO treatments. My sister had HBO for a bad wound. She did have to have tubes in her ears to relieve the pressure and her eyesight was affected for a few months. But the treatment was a success!

All the best,
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.
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larryfb Offline OP
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hi Siouxbee,

it is unclear if insurance will pay. the hospital doc told me that it is covered by Medicare, which is the standard by which many insurance companies follow. however, some companies (as he noted bcbs) have listed hbo as experimental.. although it is a well known effective treatment... if my company denies, he said appropriate letters will be written to try to over ride the denial.. which he expects to be the case.

so i go on faith that all will work out... the costs are about $900 per day... 30 days gets a bit expensive for most of us.

the hospital attitude is full speed ahead. i've signed the financial papers, so they got me on the hook.

i wish your husband well and will look for your posts.

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: Dec 2009
Posts: 6
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Larry,

Thanks so much for your quick response. That was my first posting, and I was nervous! We, too, are going full speed ahead. A call has been placed to the dentist who performed the root canal. From there we will go back to our RO as he seemed willing to help us with HBO if necessary.

Appreciate your kind thoughts! I look forward to reading about your progress.

Best to you,
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.
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Wow! I logged on because I am at my wits end with what to do or who to call about my husbands teeth. He had all his back teeth taken out last December before treatment which he finished in April. since then, like you, he rinses his mouth out umpteen times a day and brushes as often but it has to been to no avail. his gums are receding like yours and has had infections also. He also has had tooth 23 and 24 come out and lost tooth 30 today. I asked RO for referral to dentist / oral surgeon but he had none. I know he will have to have the HBO prior to having his teeth removed but felt we should start with a doctor? We live in Atlanta and I have called around but had little response.

Are you under the care of dentist, oral surgeon, RO, MO? Where should we start? And are you getting permanent posts and dentures or just temporaries? Are you having all your teeth removed or just the one? And if you dont mind me asking, what age range are you in? Do you know if your HNC was HPV related?
I know its a lot of questions. I look forward to hearing anyone's experience or recommendations.

Siouxbee - Your husbands osteonecrosis just started? I thought that the risk went down with the passage of time so I had not considered the possibility?


Traci
*******
Spouse to Lew (59)(5 family members DX)
SCC IVA/T1N2M0 BOT DX 9/08 /Tonsillectomy(cl)/ TX 12/08 (TPF)x2 /RT x35 w 7 wkly (Taxol, Carboplatin, Erbitux) Finish 4/09 / Port /no peg lost 105lbs/ 2/10 CT clear/HBOT x30/all teeth out and implants placed
www.asilentepidemic.webs.com
traci #108565 12-10-2009 06:32 AM
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Traci,

Actually I remember Gary posting soon after I joined this site 3+ years ago that teeth problems can take 4 to 5 years to develop post Tx. Have never heard that topic discussed since or at least I don't remember it. Ever since then I told myself that I would continue to wear my trays every night forever. My dentist had already told me that but Gary's post sealed the deal.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Dec 2009
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Hi Traci,

My husband received 70 rads of radiation plus the 3 chemotherapy treatments. Above 60 rads is higher risk for ON.

We spent another 3 hours at UCLA yesterday because the pain has been so bad. They pulled out 2 tiny pieces of bone. We are in for a long haul with his jaw. They are hoping with peridontal solution injected around the area 3 x's daily that the bacteria will be under control and pain will eventually go away. No guarantees from them, of course. We have to go back every 4 weeks for follow up to see if more bone is pushing up.

This was the first time the DDS mentioned HBO treatments. However, we will have to take up that issue with our RO.

Best regards,
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.
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I am one that will follow your post to see how your husband makes out with the bone removal. Both sides of my lower jaw are just dead bone .


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
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