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Old 01-22-2009, 09:51 PM   #1
Vic
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Any concerns with Zometa and Osteonecrosis? My dentist scared me.

I had my teeth cleaned today and mentioned to the dentist that I was having a bone density test, because my doctor wanted me to take twice-yearly Zometa infusions. He was very wary of this when I told him it was based on a small study that examined the benefits of the drug to prevent bone metastases and proceeded to tell me about a USC study (he gave me the oral surgeon's name) and went into details about positive and negative-charged atoms and how it binds to the bone. He went on further to say that the old-time bisphosphonates didn't have the osteonecrosis problem due to the addition of this atom. It all got pretty technical, but he showed me a laptop photo and it was a horrible image.

I told him I didn't think it was as much of a problem if you weren't on chemo, and he said that infusions of bisphosphonates were the problem, and not the pill form.

Secondly, when I saw my gyn., she mentioned a drug called Fortera (or something like that; I'll put a call into her next week) that is bone-building, like Zometa, but doesn't have the osteonecrosis problem. She started explaining the osteoblasts and osteoclasts.

Apologies for not having all the information, but do any of you have concerns about this and what, if anything, have your doctors and dentists said about Zometa and bone-building drugs?

Thanks,

Vicki
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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Old 01-22-2009, 10:06 PM   #2
Kim in DC
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The majority of ONJ cases occur when people are taking another type of chemo along with Zometa and then have dental surgery. There have been some cases Fosamax and Actonel as well.

The drug your GYN is talking about is Forteo. It does stop bone loss but it is a totally different class of drugs. It works differently than bisphosphonates, you have to inject it yourself, and you can only take it for 2 years. Your Onc is giving you Zometa to prevent cancer and Forteo acts a totally different way. There are no studies that suggest it's efficacy against cancer.

Kim
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8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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Old 01-23-2009, 06:23 AM   #3
Susan
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Hi: I'm a dental hygienist, and I know at our office, when someone is on any bisphosphorates (which now days, effects a large number of patients), the only issue we have is for extractions. We always refer any patients on those drugs to an oral surgeon, and they will do a blood/urine test to see if they would be a candiate for an extraction. We actually only have one surgeon in the our area that will be willing to do surgery w/ the test, so just hope we don't need any teeth pulled! But as a far the bisphosphorates affecting having your teeth cleaned, routine fillings/crowns, that is not problem. But make sure you let your dentist know that you are on any zometa- like drugs. The drug Forteo is a different type of drug than the zometa.
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IDC, Stage 1, Grade 3
Oncotype Dx Score 40
Her2+++ E+P+
Lumpectomy 5/05
Re-excision 6/05
4AC
33 rounds of radiation
1 year Herceptin (had to quit after 8 months, due to low muga scores)
Faslodex until 11-07
Hysterectomy with ovaries 11-07
Arimidex 12-07 switched to Aromasin 10-09
Quit Aromasin 11-09 due to joint pain

Last edited by Susan; 01-23-2009 at 09:10 AM.. Reason: miss spelling
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Old 01-23-2009, 06:50 AM   #4
RobinP
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HI Vic,

Just wanted to throw this out there for you. I heard a webcast by the famous Dr. Larry Norton at Mem. Sloan Kettering Ca. Ctr. and he said that he does not advocate biphosphonates for early stage bc and that a new and better drug will soon be on the market to prevent bone mets and build bone mass. Copied my post about that and the link below to Larry Norton's talk:
http://74.125.45.132/search?q=cache:...lnk&cd=4&gl=us
PS. I agree that the oral biphosphonates are a lot safer than the infusions. You could always get a second doc opinion on this.

FYI Here is the link to the new bone drug
http://www.communityoncology.net/jou...es/0506291.pdf

http://www.oncolink.com/resources/ar...th=01&id=15938
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Last edited by RobinP; 01-23-2009 at 07:15 AM..
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Old 01-26-2009, 11:09 AM   #5
Vic
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Thanks Kim, Susan and Robin

This is just what I was looking for, and I really appreciate your input on Zometa and dental health.

Thanks, Kim, for giving me the correct name of the other drug (Forteo) and its differences. Susan, knowing you're a dental hygienist, is very reassuing and your experience in the field will really help me make my decision about Zometa.

Robin, I had no idea another drug was in the works. These links you provided will help me do my research and I'll check them out. I just hope, if they prove to be safer than Zometa, that they will be offered soon. I'm thinking I would like to start the Zometa infusions this spring. (Becky, I know you've been on Zometa and will you stop your infusions after three years? Or, do you continue indefinitely due to your osteopenia?)

Your quick feedback means so much to me and really shows why this website is such a wonderful, caring and helpful place to be.

See you online,

Vicki
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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Old 01-26-2009, 11:45 AM   #6
Rich66
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A vague but possibly helpful article:

Reduction of osteonecrosis of the jaw (ONJ) after implementation of preventive measures in patients with multiple myeloma treated with zoledronic acid

M. A. Dimopoulos1,*, E. Kastritis1, C. Bamia2, I. Melakopoulos3, D. Gika1, M. Roussou1, M. Migkou1, E. Eleftherakis-Papaiakovou1, D. Christoulas1, E. Terpos4 and A. Bamias1 1 Department of Clinical Therapeutics
2 Department of Hygiene and Epidemiology, Medical School, University of Athens
3 Department of Maxillofascial Surgery, H. Dunant Hospital
4 Department of Biomedical Research, 251 General Air Force Hospital, Athens, Greece

* Correspondence to: Dr M. A. Dimopoulos, 227 Kifissias Avenue, Kifissia, Athens 145 61, Greece. Tel: +30-210-3381541; Fax: +30-210-3381511; E-mail: mdimop@med.uoa.gr
Background: Osteonecrosis of the jaw (ONJ) is a well-described complication of bisphosphonates use in patients with multiple myeloma (MM). We investigated whether the occurrence of ONJ decreased after the implementation of preventive measures in 128 patients with MM who received zoledronic acid.
Patients and methods: Patients with MM who received zoledronic acid were included in this analysis. Patients with a previous use of other bisphosphonates were excluded; patients were stratified into group A (n = 38) and group B (n = 90) if treatment was started before or after the implementation of preventive measures.
Results: One hundred and twenty-eight patients were included in this analysis. Sixteen patients (12.5%) developed ONJ—group A: 8 (26.3%), group B: 2 (6.7%) (P = 0.002). The incidence rate (IR) was 0.671/100 person-months for group A and 0.230/100 person-months for group B [IR ratio 2.92, P = 0.029, 95% confidence interval 1.06–8.03]. No patient in group B developed stage III ONJ.
Conclusion: In conclusion, the risk of developing ONJ after treatment of zoledronic acid is reduced (but not deleted) by the implementation of preventive measures.
Key words: multiple myeloma, osteonecrosis, preventive measures, zoledronic acid
Received for publication February 6, 2008. Revision received June 13, 2008. Accepted for publication July 15, 2008.
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Old 01-26-2009, 12:32 PM   #7
StephN
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Thumbs up

Hi Vickie -
What to do with our bodies gets to be full of burning questions, huh?

Regarding your question, did you see the following post from Lani:
http://her2support.org/vbulletin/showthread.php?t=37687

This is a German study of metastatic breast cancer patients who were taking biphosphanates. Of the surviving cohort there was about a 5% incidence of ONJ with Zometa over 6 years, but again these patients were on other chemos and some had bone mets.

Actually, I think your plan of beginning with Zometa and then moving to another drug when it is available is not bad. Especially since you are healthy now and most likely not in any immenent need of tooth extraction.

(Getting my teeth cleaned again tomorrow!)
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.

Last edited by StephN; 02-03-2009 at 11:09 AM..
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Old 01-26-2009, 08:51 PM   #8
Vic
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Hey Steph

Nice to hear from you, Steph, and I love your pic and your wonderful quote. Excellent and I love Thoreau.

Yes, these decisions we have to make based on what's presented to us at our office visits does make life interesting, doesn't it? I appreciate you pasting in Lani's post, too, as she always provides such good material for us to use and consider.

Smile. Your teeth will be sparkling tomorrow (and don't forget to floss).

XO,

Vicki
__________________
Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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Old 01-27-2009, 04:59 PM   #9
suzan w
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I have been doing daily injections of Forteo for a year. One more year to go, then Zometa infusions. I was not aware of the other drug (Lani's post?) but will ask my doc about it. I did talk to my dentist about osteonecrosis before starting Forteo. It seems like no one really has any answers as we are the ones taking these drugs now, then, based on what happens to us....they will come up with statistics!
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 02-02-2009, 11:01 PM   #10
dchips1
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Onj

I had 2 root canals while on Zometa with no problem, by an endodontist,,,it was the dental "tech" who made the original wound in my lower jaw, with a bite wing xray, that I told her it hurt. that has cost me a lot of pain, money and soon a chunk of my mandible.


Get your teeth taken care of but BE YOUR OWN ADVOCATE They must exercise extreme caution with tools, x-rays even thier hands when dealing with your mouth. My peri even numbs up the tooth in a different location.

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.


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