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Old 01-07-2008, 04:10 PM   #1
Cathya
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Actonel, et al not the only dental risk.....radiation is too!!

Following my radiation I had most of my teeth capped as the spray from the radiation blew holes in them. I am also on actonel. For some reason I developed a deep gum problem with one of my back teeth. I have never had a problem before but was told the tooth would have to come out but I should see a specialist because of my actonel treatments. My appointment was today and much to my surprise the doctor said that there is more risk for me from the radiation spray to my jaw (had my supraclavicular node blasted for a tumor) than the actonel. There is no way to tell if there is any damage to my jaw at that point but iff there is and I get an infection following the tooth removal (and I must get the tooth out....no question of it) I could end up the with the need for more surgery and bone removal.....thatistosay the same problem you could have from the actonel. Plus, in his view the odds are greater of this problem and it is every bit as serious. So, if you have had radiation to your neck area......beware. If you going to have radiation.....ask for protection from spray. Just one thing after another....lol.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 01-07-2008, 05:56 PM   #2
Jean
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Cathy,
Sorry to hear about your issues. I have a close friend who had radiation to the neck area. 20 years ago. She shared with me that back then the radiation was completely different from what treatments are today. Five years after her treatment she had bone loss so great in her jaw that her teeth both upper and lower were just holding in her jaw by a small margin.
She had to have her teeth removed. But the up side to the story is
she has beautiful teeth and has been cancer free all these years.

I am on actonel also.

Wishing you good luck.
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-07-2008, 06:57 PM   #3
dhealey
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Cathy, sorry to hear of your issues with your teeth. I have not had radiation, but had chemo and was on arimidex and aromasin in the past year. Two of my crowns have fallen out and I have had 3 upper molars fracture. The last one that fractured caused an abcess and the tooth had to be pulled. The dentist told me the problem was coming from the arimidex and aromasion causing bone loss in my jaw. I will be having several teeth pulled in the next few months and then partial dentures. I have decided not to take any more AI's due to all the side effects they were causing me and now this problem with my teeth. I feel your pain!
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Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 01-08-2008, 10:23 PM   #4
dchips1
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I had zometa and whole brain rads with teeth/jaw damage

I just posted some of the things to watch for , They call it osteonecrosis if it is only from the biophosphanate, osteoradionecrosis if it was from radiation. Please research and look around, right now the best theory is hyperbaric oxygen, and do not let anyone cut the gums, excise bone exposed or not or extract unless it is the last resort. Most of my research has shown the more you mess with it the worse it gets. Peridex mouthwash, closis, tea tree oil mouthwash, and biotene helped my gums some I had huge chunks of flaps of skin, loose teeth and a 1 cm open area. Now teeth have moved, have braces, but jaw has healed from the hyperbaric oxygen. I have 1 small area 1-2 mm exposed healthy bone left my PET/Ct scan lights up on the jaw, the panogram x-rays do not show any bone loss at this time, best kind of x-ray non invasive. Be careful what you eat, even a hard potato chip can damage the gums. I had an old fashioned peridontist try toi excise the gum tissue for me!!!! I said "no thanks" call my onc for antibiotics and never went back email if you need more info
Darita GOOD LUCK!!!!!
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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.



Last edited by dchips1; 01-08-2008 at 10:25 PM.. Reason: oh I also had 2 root canals this year! Yeah we pd for sombodies new toy!!LOL
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Old 01-09-2008, 03:31 AM   #5
Cathya
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Darita;

The dental surgeon I spoke to told me that my risk of osteoradionecrosis was higher in his view than the risk of the other from actonel. He told me that the tooth must come out and it is merely a question of what I am prepared to go through prior to that. I have had two opinions on the tooth removal unfortunately...and it does need to come out...there is an 8 mm pocket which seems to have come up suddenly. He did the x-ray that wraps around the mouth and told me that there is no way he can tell if there is damage to the bone area of the tooth prior to its removal. The radiation was on the other side of the mouth as the clavicular node is on the left side and the tooth is back, bottom right but I did suffer blown teeth on both sides although more on the left. It is so frustrating. He told me that I would get antibiotics following the tooth removal and that I would know within two weeks if there was going to be a problem. Basically it sounds like a crap game.....pull the tooth, hope for the best. He discussed the oxygen chamber but didn't seem too keen. I question that as I have had this little lacunar stroke and don't want to fool around with pressure on my brain....this is just me deciding that intuitively so I could be totally wrong. He also said that there was no way to prepare for the tooth removal in order to reduce the risk. Well....like I said....a crap shoot. I would so appreciate any ideas you might have. Thanks so much.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 01-09-2008, 10:07 AM   #6
TriciaK
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I am very interested in this thread as I too have a tooth which really needs to be extracted. It is the last tooth on the lower right side---may even be a wisdom tooth as there is no jawbone beyond it. I only had zometa about five times---does it matter how long? I have not had radiation. What kind of a dental specialist should be consulted? My regular dentist won't touch it. What is the hyperbaric treatment and what is it like? I appreciate your info and experiences--as always this site seems to be the best place to get answers! Thank you all so much---Hugs, Tricia
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Old 01-09-2008, 11:33 AM   #7
Cathya
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Tricia;

The dental surgeon I saw said that the half life of these biophosponates is very long so I would think you would still have to consider that a risk. However, he did indicate that he felt the risk from radiation was more than from these drugs. He thinks the risk is there but not a large one. Thank goodness you didn't have radiation. Hopefully someone will have more information.

Cathy
__________________
Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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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
__________________
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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