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didier Offline OP
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Okay, so mom needs 20 HBO treatments. Good news - apparently insurance will cover it. However, the doc told her that although they are extracting the majority of her molars, they are not being replaced with dentures. Huh? Did I hear that right? The doc told her she'll have to adjust to chewing with her six front teeth. Granted she's still on a g-tube, but without dentures, this hardly helps her ability to get rid of the tube. Does this make sense? Is this how it's done? Is this typical? They pull the majority of your teeth and only leave you with the front ones? C'mon. Tell me I misunderstood something. Please.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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JAM Offline
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Did they give a reason for not replacing with dentures? Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Makes no sense to me, but after the HBO, she will be all set for implants, if that is in the picture.

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didier Offline OP
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I wasn't at the doctor's appointment today, but I freaked out when mom told me what she thought the doctor told her. I asked mom the same questions JAM, but she didn't have an answer for me. I guess I should have been at the appointment. Now that I've read your responses, I can only hope that mom misunderstood the doc. I'll contact the doc on Tuesday to get the scoop. Thanks for the responses, I'm feeling better knowing this isn't the norm and that it;s hopefully a misunderstanding.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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didier - Same thing happened to me. Here was the rationale in my situation: Post radiation mouths cannot tolerate injury - even minor injuries like those caused by dentures. ORN is the name of the condition. It is the loss of blood supply to the jaw caused by radiation. The tiniest of injuries can become a very dangerous condition causing extensive damage. My oral surgeon wanted me to go without dentures for two years after radiation ended. I'm glad I waited. I can now tolerate them and my risk of ORN is slightly less. Too bad the docs didn't give you the rationale. Hope this helps. TJ


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
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They did this to me in 1997. Extracted all my 16 rear teeth and then refused to make me any dentures temporary or otherwise because of the ridges in my gums from the surgery.

First question is: are all these extractions necessary? Mine were not. So get a second opinion. When it comes to getting replacememt teeth or partials, make certain you are dealing with a professional that treats cancer patients.

I had only my 6 upper and lower front teeth for over a year and a half and managed to be able to eat. I was like a rabbit. Couldn't eat anything that needed to be chewed on back teeth and all meats had to be cut to tiny portions because of radiation damage. Well 15000 1997 dollars and god
knows how many dr appts later I finaly had partials that worked like a charm and even gave me saliva when I popped them in in the morning.

I guess my first question every time this dental issue comes up, is it really necessary? Losing lots of your teeth compromizes your ability to eat and heal. OCR is a problem but HBO treatments can help. Every case is different. I think second opinions on tooth extractions are a good idea.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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From all I have read, and Gary and Brian correct me if I'm wrong, the risk of ORN is quite small. Something like 5% or so. Not worth losing teeth over, nor going two years without teeth. I had conventional radiation and I've had teeth extracted and plenty of injuries to the inside of my mouth from additional dental surgeries and from jagged edges on my teeth. Never had one ounce of trouble from it.

I would question her dentist VERY strongly about why he's removing the teeth and what he's talking about with the no dentures stuff.

Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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The numbers I have read are more like 10%. BUT, some people get ORN who HAVE had their teeth pulled. I essentially agree with the other posters - if your teeth are in good condition - not perfect, but well maintained and you are willing to step up your dental hygiene to unprecedented levels, then by all means challenge them on the removal of your teeth. I kept my teeth, have them cleaned 4 times a year, floss nightly, had dental trays made and do in- home flouride treatments with presciption foam. I have minor repairs made sooner rather than later. You can never slack off on this - ORN is a lifetime risk. What this meant in reality was dragging my sick, weak ass into the bathroom every night for thorough cleaning and flouride treatments. It wasn't easy and there has to be a major committment to this otherwise it might make more sense to get the teeth pulled.

Unfortunately it is typical. In my opinion it is barbaric. I went AMA to keep mine. The recommendation to pull mine actually came from a dental oncologist at UCSFCCC.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Point of information please? I have seen "ORN" several times but don't know what it stands for? Thanks! JaneP


Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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Jane, ORN is osteoradionecrosis, bone death caused by lack of blood supply to the bone due to it being in the radiation field. No injury to the bone and there will probably be no ORN. But extract a tooth, for example, and the bone may not have enough blood supply to heal. That is why people facing major bone trauma, like extractions or implants, may undergo hyperbaric oxygen, HBO, therapy because that temporarily revascularizes the bones, allowing them to heal normally and thus avoiding the dreaded ORN. The awful thing about ORN is that once it gets started, it just keeps going, so much bone can be lost. The only fix is to get ahead of it and remove bone yet undamaged, as far as I know. It is not something anyone, patient or docs, want to deal with.

I ask anyone who has better information to please chime in.

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