Zometa -- worth the risk?

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HeleneS
HeleneS Member Posts: 30
edited June 2014 in IDC (Invasive Ductal Carcinoma)

All my prognostic factors were good, so initially only tamoxifen was recommended by two different oncologists. Then my oncotype came back 23 so they've both added Lupron (reversible menopause) to their treatment recommendation.  One of them has also added Zometa 2X a year to her recommendation.  And the other said that Zometa is not the "standard of care" for my situation.  Any thoughts about Zometa for stage 1 considering the risk of jaw bone death?

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    Helene,

    Lots of woman are on Zometa. I am not stage 1, stage 2 actually, but it does not matter stage really. A Recurrence CAN happen in anybody. There is a bunch of " stage 1" ladies who are now on the Stage 4 boards.

    I beleive the risks benefits faaaarrrr outweigh the risks. You are right Zometa is NOT standard of care YET...but my onc and many other ladies oncs on this board beleive that it will one day. I have been on it since July 2008. First infusion I was a little bony aches..but now fine. The "jaw risks" your concerned about happens in very very few.

    If you are concerned talk to your dentist and the only recommendations I have if you are considering taking it is to have a dental check up and fix anything that needs to be fixed. Ie...fillings, root canals , extractions. The big risk here is woman on Zometa who have major dental worklike the extractions and root canala. simple cleanings is fine. I know all this stuff because I am a hygienist and have the theory behind all this.

    P.S. I'm also on Lupron.

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited March 2009

    Hi Helene and welcome to the boards.

    If you do a search under the keyword "Zometa" you will come up with many conversatoins we have all hadon the board regarding the opinions of oncologists, reasons for patients taking or not takig it etc,  It is a persoal decision for each of us.

    I am a stage I, had a .8 mm tumor, and I will be starting Zometa every six months in two weeks.  I am also on Arimidex.

    My ONCOdx came back at 24, and I also did CMF chemo.

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  • HeleneS
    HeleneS Member Posts: 30
    edited March 2009

    Thanks OneBadBoob.

    I hadn't figured out how to search.  It seems that most taking Zometa are higher stages than stage 1.  My understanding is that the risks remain years after you've taken it.  Is this right?

    Side question:  Your factors all seem good.  The oncotype score was what made the decision to do chemo?

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  • pamelamont
    pamelamont Member Posts: 14
    edited March 2009

    Hey guys,

    I have been doing a lot of research trying to find alternatives to chemo and I saw your postings.  Is this Zometa/Armidex/Lupron and alternative to chemo? My OncoDX score came back at 35 so my onc told me that I had to take chemo.  The thought of chemo terrifies me!  I don't know if any of you have heard of Zoladex plus tamoxifen working as well as chemo or are there any other ideas out there.?

    Thanks!

    Pam

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  • HeleneS
    HeleneS Member Posts: 30
    edited March 2009

    Pamelamont:

    In my situation, two oncologists have never recommended chemo (only tamoxifen).  My intermediate oncotype score though, caused both of them to add to their initial recommendation (Lupron).  And one of them is also recommending Zometa.  So I would not say that this is a substitute for chemo. 

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  • pamelamont
    pamelamont Member Posts: 14
    edited March 2009

    Hi Helen,

    Can I ask you what your Oncotype score was? And please tell me what Lupron is.

    Thanks for the reply!

    Pam 

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  • pamelamont
    pamelamont Member Posts: 14
    edited March 2009

    Sorry Helen for the stupid reply.  If i would have scrolled up on this message board I would have found my answers.  I am very new to this discussion board and I am still trying to figure my way around!

    Pam

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  • HeleneS
    HeleneS Member Posts: 30
    edited March 2009

    Lexislove:

     I understand that most times the benefits of Zometa outweigh the risks (as in the case of bone mets or advanced cancer), but if it's being prescribed (along with Tamox and Lupron) for treatment of early breast cancer based on the study showing it cuts recurrence by 1/3, then is it still worth it?

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  • lexislove
    lexislove Member Posts: 2,645
    edited March 2009

    Helene...it depends on what YOUR risk of recurrence is.....the studies to date say Zometa reduces recurrence by about 35 %....

    So say YOUR risk of recurrence is 10%..then .35 X 10 = 3.5...10-3.5 = 6.5   So Zometa will leave you with a risk of 6.5%

    BUT...if YOUR risk is 40% then.... .35 X 40 = 14....40-14 =  26  So, Zometa in this case will leave you with a recurrence risk of about 26%

    Big difference...basically the higher the risk of recurrence....the better benefit a woman has a reducing recurrence with adjuvant therapy.

    Best to ask your onc what your risk of recurence is and go from there...I hope I made somewhat sense..lol

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited March 2009

    Helene, yes, it was my Oncotype score and consults with three oncs that made my decision to do CMF chemo.

    Also, unfortunately, there was a typo mistake on my original pathology report stating my grade was 3, not 1.

    But with my Oncotype score, I think I would have go for the chemo anyway.

    I am post-menapausal and had the beginnings of osteopenia according to a bone density test before I started the Armimidex.  I am on Arimidex, which is a bone killer!!  My rheumatologist wanted me to take Actonel, but my Onc felt that taking the Zometa every 6 months for two years would be even better for my bones plus the added benefit of reducing recurrence risk.

    I did lots of homework, sought out several second and third onc opinions, and after convincing my dentist, who was against the Zometa--would he rather see me alive with ONJ or dead from BC, he said I will defer to the onc--I will have teeth cleaning every three months, and get those "swirl around your head" x-rays every six months to watch for any problems developing.

    I had my first "swirl around" x-ray this week, everything looks fine.

    I will also take anti-biotics before cleanings.

    I don't need any dental work, and I am one of those flossing freaks--would no longer skip a day of floosing than skip a day of peeing!!

    We each have to weight the risks/benefits and make a decision we are comfortable with. 

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  • Skyrat
    Skyrat Member Posts: 310
    edited March 2009

    Helene - just to throw my 2-cents in, for what it's worth.  I was diagnosed in Apr 2007 with advanced breast cancer.  After the 26 weeks of weekly and daily chemo, double mastectomy, and 33 rads, my scans showed numerous bone mets...restaged to Stage IV in May 2008.  I have been on Aromasin and Zometa since.  The last scans I had showed no progression of mets, and all but 2 areas inactive.  I take Aromasin daily and Zometa monthly - thank God, the Zometa seems to be working and I haven't had to do more chemo.  SE of Zometa - hard to distinguish between what is caused by Zometa and what is caused by Aromasin since I started both at the same time.  But - it is all tolerable.  My bone density is great and I am hoping it stays that way.

    So, for me, it has been a blessing.  It is well worth talking about the down side with your onc, your PCP, and doing some research.  Good luck!  And hugs

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