HER2 Support Group Forums - View Single Post - POST treatment with Zometa, or any biphosphonate

StephN · 11-21-2008, 03:18 PM

Hi -
I know the question is for those who did not have mets, but I am answering the osteonecrosis of the jaw question.

My med onc had a special interest in bones - their problems and treatment. I asked her earlier this year about taking Zometa again and she said "probably not necessary at this juncture since you already had so much and are NED."

Since I had taken the Zometa for so long, I was curious about the jaw reports. My med onc said she did not know of one patient at my cancer center who had that problem. I also asked my dentist who knew of the reports. Same answer - he said at the last conference he went to, there was ONE dentist who reported this problem and said that person had bad teeth and gums even before being treated.

This is not really an answer from a STUDY, but I HAVE been asking and these are the experiences of my big city doctors.

So I think the actual numbers are quite low.

11-21-2008, 03:18 PM	#6
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Hi - I know the question is for those who did not have mets, but I am answering the osteonecrosis of the jaw question. My med onc had a special interest in bones - their problems and treatment. I asked her earlier this year about taking Zometa again and she said "probably not necessary at this juncture since you already had so much and are NED." Since I had taken the Zometa for so long, I was curious about the jaw reports. My med onc said she did not know of one patient at my cancer center who had that problem. I also asked my dentist who knew of the reports. Same answer - he said at the last conference he went to, there was ONE dentist who reported this problem and said that person had bad teeth and gums even before being treated. This is not really an answer from a STUDY, but I HAVE been asking and these are the experiences of my big city doctors. So I think the actual numbers are quite low. __________________ "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.