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Old 11-21-2008, 07:38 AM   #1
RobinP
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POST treatment with Zometa, or any biphosphonate

THIS QUESTION POST IS ONLY FOR EARLY STAGE BREAST CANCER, NOT METS

I am not a fan of Zometa and the biphosphonates, despite the fact they are suppose to help prevent bone mets. I was on Actonel for four years but stopped due to my fears of jaw osteonecrosis, as the longer you are on biphosphonates,the higher the risk for osteonecrosis side effects.

Just curious, but how many of you have started biphosphonates post treatment recently with the news that these drugs decrease bone mets? Also, has anyone else stopped treatment after four years of being on oral bone building drugs due to fear of jaw rotting?

PS There is an expotential terminal half life of biphos. drugs, where they never completely leave the bone once deposited. Also, if you're on these drug you better make sure you are taking calcium 1500 mg a day and at least 800mg of vit D or you could do your bones worse damage.
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Old 11-21-2008, 08:50 AM   #2
dlaxague
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not just bone mets

Hi Robin,

I haven't taken these drugs, so can't answer your question. But I have a tag-along question to add to yours.

In the study most recently reported, which was of premenopausal women doing ovarian suppression and Tamoxifen or an AI plus Zometa every 6 months, there was a decrease in all mets by 36%, not just bone (a surprise to almost everyone). In addition, there were no reports of osteonecrosis of the jaw. But that's just one study.

I don't know if there's a relationship between ONJ and bisphosphonate dose, but I would suspect that to be true. There has been a very wide dose range especially when the drugs are given to women with active bone mets. I think that more recently, most oncs have backed off from the more frequent dose interval when administering bisphosphonates.

So when answering Robin's question, would you also say what bisphosphonate and what dose (if known) and how often you take (or took) it?

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Old 11-21-2008, 09:54 AM   #3
Gerri
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Hi Robin,

Since I just started on Zometa last August, I was struck by your post on another thread:

"I'm NOT doing Zometa, nor would I ever do Zometa, unless I had bone mets . You see Zometa has a ten percent chance of causing osteonecrosis of the jaw(Jaw bone rotting and death), which is resistant to treatment."

Where did you get that number? I did a brief search of the internet and couldn't come up with anything more recent than 2006, but found nothing with statistics. I'm sure if I spent more time I would be able to find something but I was hoping you could provide a link to your stats. I did find this on the ADA website http://www.ada.org/prof/resources/to...eonecrosis.asp

My reasons for Zometa: I was on Tamoxifen for two years and finally went into menopause. Now that I could finally switch to an AI, I asked to be put on Femara. My onc did not do a bone density test until I requested it after the first three months on Femara (she felt I was "covered" because Tamoxifen builds bones). The results were that I had osteopenia of the lumbar spine. I had read research about the benefits of Femara and Zometa and asked to start on Zometa. I had my first (and so far only ) dose in August. I am scheduled for another in Feb(sorry don't know the dosage).

I hope that this is a topic that will be discussed in San Antonio this December. For now I am going to sit back and wait to see what current reseach shows. I plan on having dose number two unless something definitive comes out to show me that the risks outweigh the benefits.

Thanks for starting this thread. I am sure it will generate a lot of interest.
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Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
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Old 11-21-2008, 10:17 AM   #4
RobinP
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Gerri, I had osteopenia of the hips and took the Actonel for a while, but I don't think I would ever do Zometa for oestopenia, due to the risk of osteonecrosis. It was probably good that I take Actonel for four years,not only to build bones, but to help decrease any bone mets. I need to recheck my bone density soon to see what's going on there.


No, I don't have the ten percent risk articles in front of me now, but the risk I have read for intravenous biphosphonates is around 10%, while the risk for oral was low at 2%.

Note, I was was only aware that bisphosphonates decrease bone mets:
BREAST CANCER — Bisphosphonates have several potential uses in women with breast cancer:
  • Prevention or delay in skeletal complications, as well as palliation of bone pain in patients with documented bone metastases
  • Preventing the appearance of bone metastases in patients with high-risk early stage disease (ie, those receiving adjuvant treatment)
  • Prevention of the bone loss that accompanies adjuvant systemic therapy
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Old 11-21-2008, 12:08 PM   #5
dlaxague
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more references

I can't find the full text of Paul Gnant's study that I mentioned below. He presented it at ASCO in 2008. Here's one snip from the press release that was reported many places:

"The new study involved 1,800 premenopausal women taking hormone treatments for early-stage breast cancer. Zometa cut by one-third the chances that cancer would recur -- in their bones or anywhere else." (my emphasis)

As for ONJ, the stats range from 1 to 10%, most being in between. The studies and articles that discuss dose, frequency, and route of administration note that the incidence is highest for those receiving the most frequent IV doses for long periods of time, for treatment of active bone mets. There are very few reports of ONJ after oral therapy.

And again, Gnant's study of the 1800 women above, given Zometa every six months IV (which was enough to decrease recurrence by 36%) has so far not had any ONJ. Here's one online article that noted that, in the bullets midway down:
http://professional.cancerconsultant....aspx?id=42046

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Old 11-21-2008, 03:18 PM   #6
StephN
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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.
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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.
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Old 11-22-2008, 06:57 AM   #7
RobinP
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Steph, I know a few years ago when I researched this, the intravenous risk was much greater than the oral risk and I know that 10% for the intravenous risk is sticking in my head as the risk figure. If I can find my old articles to support this, I will post them. Just a little advice to keep up with good oral care, Steph.Even after you stop biphosphonates, they stay in the bone forever and very slowly deplete. Be really meticulous about oral mouth care, knowing there may still be a risk for osteonecrosis, albiet it is likely extremely low.
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Old 11-22-2008, 08:26 AM   #8
Becky
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Just this week I had my sixth or seventh every 6 month dose (I do not know the ml/kg body weight I was given). I started this right after my ooph because I got a DEXA 4 days after the ooph and it showed osteopenia of the lumbar spine (like Gerri). My gyn suggested to my onc the Zometa since I was getting Herceptin infusions anyway and the Zometa is better. My onc and I just kept going. Its nice its had more benefits than just the bone hardening. I always mention this to my dentist when I go but I haven't had any dental problems during that time (but did for the first full yr after chemo - my dentist said that chemo really does a number on the teeth).
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-22-2008, 09:04 AM   #9
Jean
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I have been taking Actonel for three years
35 Mg. once per week.

Just had my yrly bone densisty test and there was no change in my status...slight osteopenia of my hip.

I take calicum 2,000
Vit. D3 1,000
I lift weights and walk walk .....
Also very important, I go to my dentist every 4 months I have made many changes in my care since dx. Now do
breast check ups every 6 months...increased my dental visits and cleaning...doing the best I can. When I asked my onc. for Zometa, he said to me let's save it...for now he wants me to remain with Actonel, but I will discuss this with him when I see him in Feb. for my every 3 month check...I don't know how I manage to get my business done, house work complete, and still have all the fun I am having....it seems everytime I turn around it is time to see some Dr.? Teehee....

All good wishes to all.
Hugs,
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 11-24-2008, 05:43 PM   #10
RobinP
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It will be interesting to see what my bone scan says, now that I have been off of Actonel for a few years with only CA and vit. D. I'll let you ladies know the verdict. Thanks for the post reponses.
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