Anyone else Stage 1 BC Survivor who gets Zometa infusions?

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Nicole112
Nicole112 Member Posts: 327
edited June 2014 in Stage I Breast Cancer

Hi ladies,

As I go for my 5th round of Zometa infusion in the coming weeks, I just wonder if I am the ONLY early stage BC who is receiving this treatment every 6 months for the next 6 years?!? I tend to see ladies talk about this at later stage BC diagnosis.

I am down because between the Lupron shots every 3 months (to push me in menopause), the tamoxifen and the Zometa infusions, I am slowly but steadily gaining weight! It is depressing me and making me question why I continue to do the Zometa treatments as they seem toxic and they kick me down for a day or two?

Any of you ladies going through this, please share!

xoxo

Nicole

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2010

    Hi

    I am sure others will be along--but I wanted to respond because I am doing the lupron as well.  Along with femara (couldn't take tamoxifen for blood clot risks).  I decided against the zometa since my bone density was still fine (if it declines, I will definitely reconsider).  this is mostly because I am a "less is more" kind of girl.  I figured lupron, femara, along with the chemo and radiation I endured was enough.  I know others feel differently, but for me, I just could not sign on to zometa at the end of chemo.  My onc was all for it at first, but as time has gone on, she is less enthusiastic about zometa--- does not feel I have to do it.  But honestly, I wasn't going to do it anyway.....

    There are lots of things they can do for "insurance"purposes to keep us cured, but only we can really decide what works for us.  Sounds like maybe you might want to talk to your onc about it.  Have you had a baseline bone density test?

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    I'm having 4 x 6 monthly infusions of Zometa. My onc prescribed it more for the preventative effect than for my bones.

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  • rgiuff
    rgiuff Member Posts: 1,094
    edited December 2010

    Not doing zometa, it was never even suggested.  Also doing only tamoxifen, no lupron.  For now, tamoxifen seems to have stopped my periods or maybe I'm going into natural menopause.  It's been 10 months without a period.  Many Stage 1 women do only tamoxifen, while I occasionally see some on here who are also having ovarian suppression as well.  Guess it depends on how aggressive the Onc wants to be. 

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  • Nicole112
    Nicole112 Member Posts: 327
    edited December 2010

    Thanks ladies for your posts, what I understand is based on the following. I was diagnosed at 36, first surgery did not clear margins, second did the trick. Based on my age, the high grade, and the fact it was not cleared the first go round is the reason why they are treating me a bit more aggressively. Dr says it reduces recurrence by 30% to do the Zometa infusions... with that, I keep going. I just don't hear about it often on these walls!

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  • kathylev
    kathylev Member Posts: 117
    edited December 2010

    Hi Nicole,

    I started Zometa treatments as a preventative in November.   My onc said twice a year for 3 years.  I'm not sure what he will say now with these conflicting study results from San Antonio.   

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    I actually asked my onc about the study yesterday and he still wants to keep giving it to me.

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  • weety
    weety Member Posts: 1,163
    edited December 2010

    I'm still waiting for my onc to get back to me.  I was SUPPOSED to start zometa treatment this month, but I think my onc is avoiding having to give it to me now!  LOL!  I hope I just have an overactive imagination, but I really think she is avoiding me!

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  • carcharm
    carcharm Member Posts: 486
    edited December 2010

    Has something changed? Back in 8/09 when I was dx the only people who could get infusions if early stage were those in the clinical trials. I would probably do it 1 x month for preventative tx but did not think the FDA approved this yet.

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  • weety
    weety Member Posts: 1,163
    edited December 2010

    No, the recommendations have not changed.  Getting zometa like this is considered "off-label"  but some oncs are willing to do it for varying reasons.

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited December 2010

    My onc lied to our government so I could have it. My bone density was ok for my age and he said usually it's the women with a lower bone density to start with who will get osteoporosis from taking Arimidex. Over here you have to have already had a fracture and have lower than a certain bone density to get it.

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  • orange1
    orange1 Member Posts: 930
    edited January 2011

    I just had my last (6th) infusion - after the latest results from SABCS had been out.  Onc charts it as for preventing osteoporosis so insurance will pay.  I guess I'm not convinced it won't help prevent recurrence and my onc wasn't convinced enough to say no to the last infusion.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2011

    Thanks for the information ladies! I had no idea about this last study and the conclusion that this was not a helpful drug... in this study anyway. I will keep you posted as to what my dr does later this month as I prep for the infusion. For those who are taking it, do you get SE's... I am allergic to aspirin which I know results in some SE's with Zometa... I just get sooooo flu like for a few days!

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  • orange1
    orange1 Member Posts: 930
    edited January 2011

    re: SE's... I feel very slightly off on the day of, and the next day.  Nothing major - I still am able to go to work and the gym.  I haven't needed medication for SEs because they are so mild.

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited January 2011

    Hi, my onc pushed it, but I refused.  This new San Antonio conference is now saying that it has no protective effect on BC, just for the bones.

    I did not know re: aspirin, but am very allergic!  Wasn't going to go for the zometa, no matter what my onc said, so now I definitely will not.

    Some oncs were reccomending Zometa for early stage ladies, as the early studies (large New Zealand study) had shown it to be very effective in preventing bc metasteses.   Why they would test market it on the early stage gals, I have no clue, but I refused to be a guinea pig for this.  It is good for the bones, but there are other, less toxic ones t hat do work for bc prevention! (Evista, just shown to work) and all biophosphates apparently offer some level of protection.

    Good luck!  Perhaps it is due to the grade?  I don't know enough about this to help, but your onc may shed some light on it for you?

    How darling your baby is!!!!

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2011

    I called my onc today and HE still wants me to come in for the infusion,... I did not get to talk with him personally but his staff says he is aware of the study and he still sees the benefit... so, perhaps I am a unique case? Or my doc is cutting edge??? Either way, I still do not know if I will sit in the chair this time... I need to think about this one.

    Thanks for all your posts, and if there are any other ladies in my boat, keep sharing... and let me know if you will be continuing the infusions!!!

    As for the pic of my baby, isn't she the cutest! This was my last picture before I lost my hair, it was such a great moment captured with her!!!

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited January 2011

    Nicole I was on the clodronate arm of a study but had to stop due to reflux. I was hopingf for Zometa as crazy as that may sound. Glad to see you back posting.

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  • REKoz
    REKoz Member Posts: 590
    edited January 2011

    Hi Ladies-

    I just had my 6 month visit with my Onc. and thought I'd share what he told me when I asked about Zometa. Though newly menopausal when diagnosed, I am taking Tamoxifen rather than the AL's tried but not tolerated AT ALL. He said that the Tamox. actually has a bone protecting effect. If my next bone density test shows a decline, we would discuss it then. But he feels that as long as my bones are good now and I am on Tamox., I should be fine. It would be a different story if I were on AL's.

    This was news to me. Good news actually. Thought I'd pass that on to those of you on Tamox. who like me were unaware of this. Nice to put something about it in the plus column!

    My best to all, Ellen

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2011

    Okay doctor called me today to share I will be coming in for my next  Zometa infusion... he said he attended the San Antonio Symposium and in most cases the Zometa treatment is ineffective; however I am still a candidate who can benefit based on the fact I am premenopausal with ovarian suppression therapy(Lupron shots to shutdown ovaries). So, I wanted to share this news as I know there is so much controversy on this topic... It is good to be educated and it is important to share our knowledge for our continued health!

    Hugs.

    Nicole

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  • weety
    weety Member Posts: 1,163
    edited January 2011

    My onc just retired, so I will be seeing my new onc next week.  My old onc left me a message, though, that the new onc is "on the same page" as she is regarding the zometa treatments I was supposed to start in December.  I am post-menopause (because of ooph) so I also fall into the category that zometa seems to work will on.  I am also already osteopenic, so hopefully the zometa will come through!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    Hi all,

    I did have Zometa infusions because onc felt due to bone density tests as well as having ovaries out at 50 (54 now), that I would be a good candidate. Then came time to have big oral surgery. Time to surgery from last infusion was about 1 yr, the reason was Zometa was still in my system and oral procedures are contraindicated due to complications from osteonecrosis of the jaw for which there is no cure. I finally cleared the Zometa in Oct, had my oral sx, and had another infusion Dec 4th. Now they put dentures in first of Jan. Im having severe sore spots on my gums and jaw pain. They are monitoring me closely. I opened my e mail one day and the FDA had sent the alert that Zometa was not going to be cleared for prevention of breast cancer. the onco said she hadnt had time to check into it before giving it to me. I guess while its good for the bones in ppl with mets, it looks like as of now, its not a prevention. Wish I had known just b4 getting it Dec 4th. Now it will take another yr to leave my system, and I pray my jaw will be ok..This is an interesting study, but like all others, they dont always pan out.

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  • weety
    weety Member Posts: 1,163
    edited January 2011

    I saw my new onc yesterday (my old one retired) and he is starting me on zometa next week.  I am stage 1, HER2+, 40 yrs old, but in menopause b/c of ooph.  My bone DEXA scan showed osteopenia.  I asked about the new studies and he said something to the effect as that it was thought that zometa could prevent bc recurrences, but now they are not so sure.  If I had been premenopausal, based on the new data, he would not have offered me the zometa and chosen a different bisphosphonate, possibly aredia.   But since the new studies show that post menopausal women seem to still get some benefits (recurrences lower) based on the new studies, he said he didn't have a problem giving the zometa in the hopes that there still is some truth in it helping to prevent recurrences.

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  • suzanneinphoenix
    suzanneinphoenix Member Posts: 208
    edited January 2011

    I left a message for my oncology office today....saying I wanted to cancel my Zometa infusion that I is scheduled for 3/2/11.  I know my onc still thinks it is advisable for me to get it...since I have osteopenia and have been post-menopausal for over 5 years....but I CANNOT take the side effects.  They told me "flu symptoms", but I had extreme muscle spasms for days after the first infusion, and extreme indigestion that lasted most of the night.  I haven't read of anyone having these kind of side effects....anyone out there have similar issues?  I am on Tamoxifen....

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  • weety
    weety Member Posts: 1,163
    edited January 2011

    I just got my first infusion yesterday.  Felt fine all day, until about 3:30.  All of a sudden, it felt like a truck ran over me and I had just picked myself up off the ground!  I hope it doesn't last very long--every bone in my body feels weak and is achy.  I could barely make it up my porch steps because I couldn't get enough strength in my legs to lift them high enough for the steps.  I also am super cold (probably a fever, but I haven't checked it) and have a terrible headache.  I don't think I'm sick because other than the aches and weakness, I feel fine--no head congestion or sore throat, etc.  Wow!  I wasn't ready for this since I felt fine all yesterday and this morning! 

    I asked the infusion center about taking some ibuprofen or aspirin, and they told me No, because both the zometa and aspirin/ibuprofen arer processed in the kidneys and they don't want to add anything else to the burden they are getting trying to process the zometa.  Anyone else told the same thing?  THey told me to take a warm bath and go to bed--yeah, right--with 3 kids all under 10! 

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2011

    Ladies,

    I am going for my 6th infusion tomorrow... and I hear what you are saying! I was told Zometa was no biggie, little side effects... however I continue to get side effects and flu like symptoms. There is one MAJOR thing which helps me through... unfortunately, you need to ask prior to infusion... but ask for a slower DRIP and more saline mix.

    When I asked for this, the side effects were manageable.

    I always feel symptoms 36-48 hours after treatment. It shall pass... it takes a few days. Sorry for the discomfort! And, thank you for mentioning not taking any tylenol. I had not heard of this, I need to confirm this tomorrow.

    URRRGGHH< I hate going to the CHEMO ward! :(

    Thinking of you ladies!

    Nicole

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  • weety
    weety Member Posts: 1,163
    edited January 2011

    Well, it's now the next morning, and although I'm still a bit sore, it seems that the major symtoms are gone.  Now I just feel like a VW Bug hit me!  LOL! And Nicole, the H*** with the aspirin--I'm taking one today anyways!!!

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  • suzanneinphoenix
    suzanneinphoenix Member Posts: 208
    edited January 2011

    I was told to take Tyleno prior to going in for the Zometa infusion...to downplay the flu-like side effects.  The onc office told me yesterday they could give me all sorts of other meds to offset my side effects....I still told them no thanks.  Once was enough for me!

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  • weety
    weety Member Posts: 1,163
    edited January 2011

    Did any of you get sores on your lips?  I'm a few days past my first infusion and have several sores on my lips.  Just wondering if it's the zometa or a coincidence.

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2011

    Hi Weety,

    I had my treatment on Thursday... I had a "yuck"first night but after that I was much better. I think the slower drip and more saline really does the trick! Instead of it taking 20 minutes, my process is more like an hour and 15 minutes. Try requesting this next time... also I think they put a steroid in my drip to help se's, too.

    As far as the mouth sores, I did not get those,I know this could be a se from the other chemo drugs we were given, ot sure about Zometa.

    How are you feeling now? Better?

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  • weety
    weety Member Posts: 1,163
    edited January 2011

    I just saw this new study.  Woo hoo!  Maybe we ARE getting anti-cancer benefits afterall!

    clear pixelclear pixel Bisphosphonate Use May Be Linked to Reduced Risk of Colorectal Cancer

    Elsevier Global Medical News. 2011 Jan 27, S LondonSAN FRANCISCO (EGMN) - Bisphosphonates may hold promise for chemoprevention of colorectal cancer, based on a case-control study conducted in Israel, but randomized trials will be needed to confirm the results.Among the 1,866 postmenopausal women studied, the use of a bisphosphonate for more than 1 year was associated with a 59% reduction in the risk of colorectal cancer, according to data reported at the meeting on...

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  • Nicole112
    Nicole112 Member Posts: 327
    edited January 2011

    Thanks for the info Weety! Also, I saw you on another discussion about vasular invasion... you and I share a lot in common! Now if you tell me you are in the 5% of woman who is not a candidate for reconstructive surgery, I am going to call you my soul sister!!! Ha HA!

    Did you have lumpectomy or mastectomy? I had lump followed by reexision along with chemo and rads... based on where my tumor was and the radiation, I am not a good candidate for recon... so my right nipple will remain 3 inches higher than my left :( They said I can come back this year and see if things have changed, I am just gun shy now of doing anything.

    Have a good weekend.

    Nicole

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