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Zometa pros and cons

IAmElaine
IAmElaine Member Posts: 38
edited April 2018 in Stage III Breast Cancer

I am 14 years out from diagnosis. I am still taking an AI. Now I am seeing many ladies taking Zometa. Can you share your experiences with it-good and bad? Is there a time limit on when it is recommended? I am wondering if I should bring this up with my onc in April. He is generally very proactive with treatments and I am curious as to why he has never mentioned this. I certainly don't want to miss out on something that would be beneficial to me!

Comments

  • sbelizabeth
    sbelizabeth Member Posts: 955

    IAmElaine, congratulations on 14 years of NED! You are an inspiration to so many of us. Thanks for hanging in there with BCO and continuing to share hope.

    I had to convince my MO to put me on Zometa several years back. I brought research studies and brought it up every visit, which back then, were every 3 months. She finally agreed.

    I had one Zometa infusion and she switched me to Prolia. The Zometa took more time to give--an hour in the same darn infusion room where I got my chemo--and it made me feel like I had the flu. Fever and aches. The Prolia is just a quick shot in her office, and I feel fine afterward.

    Giving a bisphosphonate (Zometa) or similar drug (Prolia) still is not the standard of care for bone mets prevention. My MO had to dance around my insurance a bit, because I'm not osteopenic (yet, anyway).

    My sister lives in Colorado and her MO never spoke of it to her. I have urged her to ask about it, but she's not the loud mouth in the family. I think Zometa is something that individual MOs are either OK with off-label use, or stick closely to current standards of care.

    Collect your research, bring it to your April visit, and ask about it.

  • ssinuk
    ssinuk Member Posts: 63

    if it helps, it is now standard of care in UK - at least where I am An nfusion every 6 months for 3 years. Made me feel really rotten tbh but for less than 24 hours

  • TectonicShift
    TectonicShift Member Posts: 102

    .

  • bravepoint
    bravepoint Member Posts: 232

    i also am scheduled to get Zometa every 6 months for 3 years. My MO recommended it as a standard treatment along with an AI, calcium and vit D. I have only had one so far and found that I was really achy the next day but it only lasted 24 hours. My next one is in 10 days. I was told about jaw necrosis but I think is a rare SE in 5% of people.

  • hopeful82014
    hopeful82014 Member Posts: 887

    I've had 4 infusions over the past 18 months (?). I did feel chilled and tired the evening after my first one (sort of like when you're coming down with the 'flu) but not after any subsequent infusions.

    You do need to be careful about dental work afterwords. My MO and dentist both discussed it with me before I started.

    Given the possible reduction in risk of distant metastasis I was eager to start on Zometa and would certainly make the same decision again.

    I don't know if there would still be a benefit to starting it so many years out but given that you're still on an AI I think that it's reasonable to have a conversation with your MO about it. Every little bit helps, right?

  • lkc
    lkc Member Posts: 179

    for me it was a right choice. I was aware of the rare Nasty jaw necrosis, but since BC cells love to gravitate to the bone, I was very thankful to have the option

    No problems, a n living happy as clam!

  • IAmElaine
    IAmElaine Member Posts: 38

    Thanks so much to all of you! I have been doing a lot of research and it appears ladies who have received this added treatment got it as they were finishing up their initial treatment. I put a call into my onc about getting this. He looked at my chart and said my bones were +17% at my last dexa. He ordered another dexa for me next week. If my bone density is still on the plus side I'm not sure I want to get this. Also, being out 14 years I wonder if it would give me any benefit. I'll continue to research this and see what I can find. Of course, if my bone density has gone south I will jump on it!

    Are there any of you out there who did not receive zometa initially but chose to do it much later? If so, chime in!

  • lexica
    lexica Member Posts: 138

    initially, my MO said I would be on it, but she then prescribed just calcium and vitamin D. I am also enrolling in the PALLAS trial, and one of the exclusions is 'currently taking bisphosphonates.' It's kind of a bummer because it means I have to choose between two drugs that could reduce my risk for mets, and with the trial, I'm not sure I'll get the drug. The PALLAS is only for two years though, so I could go on Zometa/Prolia afterwards. What do you think, am I making the right decision? Also, wondering why docs would still prescribe Zometa if Prolia side effects are better tolerated?

  • 7of9
    7of9 Member Posts: 474

    They are now giving decadron infusion just before Zometa - at my cancer center Cleveland Clinic. Good thing because last time I was itchy. This time no aches, pains, flu-ish, nothing. I get my 5 - 6 Oxy just in case (they say Zometa only kicks your but the first time but the 3rd infusion for me was really achy/yucky also). I get it on Fridays and don't plan much for the weekend. It's a wait and see based on your kidneys is what I was told. Come to think of it, despite a bad cold and extra work (sitting at a computer desk) I'm less achy than I was the month before my infusion. Can't wait for spring weather, it's tough to find time and go up to the YMCA in this cold weather. All I wanna do is put on sweat pants, take benadryl and go to bed. Need to get back to walking the dog after dinner.

  • Virginia100
    Virginia100 Member Posts: 1

    hi Lexica,

    You might want to double check again about the bisphosphonate being a disqualifier for the PALLAS trial. I had my first infusion of zometa a few weeks ago and I started on the PALLAS trial today. I was randomized to arm A so will be getting ibrance. My oncologist is in northern Virginia (

  • Sophiemara
    Sophiemara Member Posts: 20

    I've been on zometa for two years now with no adverse side effects. My onco said it's to protect the bone density against arimidex, which reduces it significantly over time and also studies have shown it blocks any metastasis from spreading to the bone.

    Many people take zometa or bisphonates whether cancer or osteoporosis related. The jaw necrosis side effect is very rare. My onco said it tends to occur in people with poor dental hygiene and my dentist said he'd only seen one person with it over the years and again, it was due to poor hygiene. If you need significant dental work they advise you come off zometa and then go back on it when complete. I also had a good dental check prior to going on It to make sure my pearly whites were good.

    You usually take it alongside hormone therapy, so I guess for as long as you are on that.

  • lexica
    lexica Member Posts: 138

    Virginia - it turns out you are right - I think they are being very flexible with the PALLAS trial. I am going to go on the bisphosphonate (due to osteopenia...already) and enroll in PALLAS.