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Anyone doing Zometa to reduce risk?

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kmom57
kmom57 Member Posts: 178
edited October 2022 in Stage III Breast Cancer

MO wants to do Zometa twice yearly to reduce risk of bone Mets. Second MO, when I asked, says it's controversial. Says he will do it if I want, but that he would not suggest it himself because nothing is “free." That he would not want to make me do it, and then I turn out to be the 1 in 100 with osteonecrosis for what Is not a huge reduction of risk. Anyone else doing it, or have insights from other MOs/sources?

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  • exbrnxgrl
    exbrnxgrl Member Posts: 5,060
    edited January 2021
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    Kmom57,

    I was on another, older bone strengthening drug quite a few years ago. My mo had me stop due to risks of spontaneous femur fractures and osteonecrosis of the jaw. She felt that here was not enough strong evidence of bone strengthening drugs decreasing the risk of bone mets to justify it’s continuing use. That was about 6 years ago and I have had no progression. There are still mo’s who support it’s use but increasingly many feel as your second mo and my mo do. My mo, BTW, is relatively new to me (my first one moved out of the US) but this is the opinion that both held. All the best

  • specialk
    specialk Member Posts: 9,237
    edited January 2021
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    Part of the thought on using bone strengthening meds to reduce bone mets risk has to do with your bone density as well, in that porous bones may allow mets a spot to set up. Have you had a DEXA scan to see what your bone density is currently? I might hesitate to use this class of drugs for risk reduction only if bone density is good. I was diagnosed with osteopenia nine years before breast cancer, but it was unmedicated during that time due to an inability to tolerate oral meds. My osteopenia remained stable during those nine years, but it worsened considerably after chemo and six months of letrozole, so my MO recommended Prolia. If I received any benefit of reduced risk of bone mets, which my MO and I did discuss prior to starting, it was incidental to the primary benefit of strengthening my bones.

  • lillyishere
    lillyishere Member Posts: 775
    edited January 2021
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    My MO put me in Zometa every 6 months for the same reason, to reduce the recurrence risk. My DEXA scan showed normal bone density and I didn't want to start Zometa but the way he explained it to me was convincing. I also asked a friend who is knowable about this and he said Bisphosphonates have been used for a long time even in children. 2xyear for 3 years is not enough to create bones to break. I started in August and next month I'm going for the second infusion.

  • kmom57
    kmom57 Member Posts: 178
    edited January 2021
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    Xbrnxgrl, SpecialK, and Lilly — thanks for the input. I have a DEXA scheduled. it will be my first baseline even though I took Femara for six months previously, and two this round. I should have pushed that earlier, but I guess I was overwhelmed. MO scheduled the Zometa immediately after, but I've been thinking about at least waiting to make a decision until after i have results from the DEXAand can think that through. Also, I have put off my dental care due to covid, and am uncomfortable doing Zometa until I have seen the dentist. Thanks for the input. It helps clarify my instincts a bit.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,060
    edited January 2021
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    I agree with your decision. Before you consider any bone strengthening drug please have all dental work completed. Bear in mind that whether these drugs help decrease the risk of bone mets is up for debate. All the best

  • AnnC2019
    AnnC2019 Member Posts: 93
    edited January 2021
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    I get zometa twice a year. I don’t know how many more rounds my oncologist will recommend. I think this will be my fourth in June. I never had a Dexa scan butother scans show bone degeneration.

  • 7of9
    7of9 Member Posts: 474
    edited January 2021
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    I am going for my 10th...every 6 months. Possibly last one. Not sure if relieved or worried. Whatever we've been doing for 5 yrs has worked... i guess! I brush too hard exposing roots so I worry about the jaw issues, but nothing else so far.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,060
    edited January 2021
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    7 of 9,

    I stopped my bone strengthening drug, an older one called Aredia, over seven years ago. No progression but a touch of osteopenia and no guarantees about any of it 🤷🏻.

  • ctmbsikia
    ctmbsikia Member Posts: 758
    edited January 2021
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    It seems interesting that a Doc would suggest this drug without a baseline DEXA. Let us know how that goes. I have had 2. Baseline right at diagnosis showed osteoporosis left hip, and osteopenia in my spine. Second scan, and after being on the anastrozole I've lost 5% in hip. I was approved for (1) Prolia shot, then denied all the other times. So, I always like to see what others are being treated with, or not. I have an appt tomorrow so not sure if Prolia is denied again, if he will offer up another med, or if I just stay med free!

    I found this while reading up on Zometa for anyone wondering about how long you should have it:


    Women with a higher risk are suggested to continue oral treatment for up to 10 years and 6 years for intravenous use, but their risk of fractures should be reassessed every 2 to 3 years during the therapy. For women with lower risks after five years of oral treatment and three years of intravenous treatment, the treatment can be stopped, but the risk of fractures should still be reassessed regularly.

  • lillyishere
    lillyishere Member Posts: 775
    edited January 2021
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    KMom57, what did you decide? I also found this one from Mayo Clinic:

    Strategies that have been linked to a reduced risk of breast cancer recurrence include:

    Hormone therapy. Taking hormone therapy after your initial treatment may reduce the risk of recurrence if you have hormone receptor positive breast cancer. Hormone therapy may continue for at least five years.

    Chemotherapy. For people with breast cancer who have an increased risk of cancer recurrence, chemotherapy has been shown to decrease the chance that cancer will recur, and those who receive chemotherapy live longer.

    Radiation therapy. People who've had a breast-sparing operation to treat their breast cancer and those who had a large tumor or inflammatory breast cancer have a lower chance of the cancer recurring if they're treated with radiation therapy.

    Targeted therapy. If your cancer makes extra HER2 protein, drugs that target that protein can help decrease the chance of the cancer recurring.

    Bone-building drugs. Taking bone-building drugs reduces the risk of cancer recurring in the bones (bone metastasis) in people with an increased risk for breast cancer recurrence.

    Maintaining a healthy weight. Maintaining a healthy weight may help decrease the risk of recurrent breast cancer.

    Exercising. Regular exercise may reduce your risk of breast cancer recurrence.

    Choosing a healthy diet. Focus on including lots of vegetables, fruits and whole grains in your diet. If you choose to drink alcohol, limit yourself to one drink a day.

  • kmom57
    kmom57 Member Posts: 178
    edited January 2021
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    Lilly, I haven’t decided. I had a DEXA today and waiting for results on that. MO also agreed I should see my dentist first, but he does want me to do it. I’ll see the dentist, and do some more research and then decide.

  • lillyishere
    lillyishere Member Posts: 775
    edited January 2021
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    I have a feeling when Zometa is done as a monthly infusion, osteonecrosis may happen otherwise, it will be very low risk. I postponed my Zometa infusion for almost a year because I was so worried about SE but once I learned the benefits, I went for it. In my case, I am recommended a total of 6 infusions in 3 years. I wonder what is your MO going to recommend. Do you go to a cancer center that is known from NCI?

  • brittonkb
    brittonkb Member Posts: 81
    edited January 2021
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    I met with my MO a couple of weeks ago. After I finish radiation, he wants me to do Zometa infusions 2x/year for 3 years to reduce the risk of recurrence. I'll have a bone density scan every 2 years.

  • kmom57
    kmom57 Member Posts: 178
    edited January 2021
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    Lilly, yes I go to an NCI center. MO is recommending every six months for three years. He told me the risk is low, but not zero. That osteonecrosis when it happens, generally is connected to dental procedures like extractions — anything that messes with the bone, so I should see the dentist first and make sure they know why.He also told me we will need to check my phosphorous regularly because Zometa sucks it out of the bone, or something like that, so you can't let it get too low. Since mine is relatively high, he does not expect problems with that. I may have the actual effect on phosphorous wrong....maybe it doesn’t suck it out of the bone but something like that.....I just know he said we will be watching that level to make sure it does not get too low.

  • lillyishere
    lillyishere Member Posts: 775
    edited January 2021
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    KMom57, same here. I checked with the dentist before starting Zometa. Also, I get a blood test + MO visit to approve the infusion +infusion within 3 hours the same day as Zometa infusion. I had SE the first time I took it but I will take any chance of reducing recurrence. I'm curious what will your MO say.

  • orangeflower
    orangeflower Member Posts: 97
    edited January 2021
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    I'm not because I'm pre-menopausal. My doctor said Zometa is only used for risk reduction in post-menopausal women. I'm not sure why.

  • lillyishere
    lillyishere Member Posts: 775
    edited January 2021
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    I am posting this link from BevJen regarding Zometa:https://www.cancer.gov/news-events/cancer-currents...

    I hope using your link would be OK with you BevJen Hug


  • luckypenny
    luckypenny Member Posts: 13
    edited February 2021
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    hi! I took zometa 2x a year for 2 or 3 years can't remember - to prevent Mets. My onc went along with it and I am almost 10 years out. I did get osteonecrosis of the jaw - however I would do zometa all over again! It's been over 2 years since I had any jaw issue and as soon as feel that little pain I have an ongoing script of antibiotic and special mouthwash It is scary but I really believe that zometa helped me stay cancer free.

  • finallyoverit
    finallyoverit Member Posts: 134
    edited February 2021
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    Interesting discussion. I’ve had a Zometa infusion every 3 months for 4 years now. If my MO put a time frame on it, I don’t remember it. I’ll have to ask him. It’s odd too that I’m getting so often when others are not.

  • blue22
    blue22 Member Posts: 172
    edited February 2021
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    I had my first Zometa infusion yesterday. I woke up at 2 amp with terrible chills, and feeling all over weak and unwell. I tried to go downstairs and make a ginger tea, and nearly threw up. I took some Ativan for the nausea, but am running out. I have been sleeping most of the day, but waking up every hour or so to pee and/or hydrate.

    My MO warned me the side effects could be bad, but we didn't really discuss what to do to alleviate them. Any suggestions?

  • sunshine99
    sunshine99 Member Posts: 2,699
    edited February 2021
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    blue, I'm so sorry about the Zometa side effects. In my experience, the "worst" SEs were with the first infusion - pretty bad nausea, but no vomiting. I got up and took a Compazine. I had a bit of a fever for a couple of days, but not super high.

    For my second infusion, I had some nausea, but nothing like the first time. Slight fever, but again, not as bad as the first time. I did take a Compazine before I went to bed after my second infusion.

    Since then (I've had nine total infusions, once a month), I've really had NO SEs. I'm hoping the same for you. You might want to ask about an anti-nausea med and take it maybe before bed the evening after your infusion. How often will you get the Zometa?

    Wishing you the very best. Nausea is the worst - I'll take pain over nausea any day.

    Carol

    Edited to add that I'm Stage IV with mets to my bones. The Zometa is to help keep my bones strong.

  • blue22
    blue22 Member Posts: 172
    edited February 2021
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    Hi Carol,

    Thank you for your reply! I'm expecting to get Zometa every 6 months, so that is not so bad. I think next time I will take something before going to bed. I also have a much harder time dealing with intense nausea than pain. Especially when you are reduced to sitting on the bathroom floor because it is so bad.

    I talked to my clinic and am now taking Tylenol, Advil and Claritin and just a tiny bit of Ativan. I am feeling much better than before.

    I'm really glad my MO warned me the side effects could be bad. I was really hoping for the best. Oh well.

    Hopefully posts here will prepare others as well! I'm sorry to hear that you are having to take this for stage IV. I'm sure you must run into a ton of people who have no clue why you keep taking chemo or what stage IV is... I know even at stage III so many people have a wildly inaccurate rosy view of breast cancer.

    Blue

  • finallyoverit
    finallyoverit Member Posts: 134
    edited February 2021
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    I asked my John’s Hopkins MO about this last week. He told me that I’ll have Zometa “forever” or until I refuse it, but that we can scale back from 4 times a year to 2. I’ve never had a reaction to it, but I’ll take the 2 less IVs a year. I get enough of those as it is. I know if he was not comfortable with changing my protocol, he wouldn’t have. As with everything, maybe the 4x a year regime was recommended when I started 4 years ago has changed. I’m ok with that.

  • lillyishere
    lillyishere Member Posts: 775
    edited February 2021
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    My second Zometa infusion is coming next week and since I had a very difficult 24 hr after the infusion, I am not really looking forward. Looking on the bright side, I felt so much better after that 24hr.

    A question for Ladies with bone mets, do you feel better 48hr after zometa infusion? Do you feel any difference?

  • finallyoverit
    finallyoverit Member Posts: 134
    edited February 2021
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    @LillyisHere ~ I’ve read where ladies do feel better after 48 hours. I don’t know firsthand. I’ve never had any sort of reaction to it.. I feel a little bit of a pity party for the day because I friggin hate the IV, but I’ve never had any sort of physical reaction to it. I hope your next infusion goes smoother.

    Question ~ do they infuse over 15 or 30 min? I’ve always had it over 30 and I’ve read where that helps lesson side effects. Might be worth an ask if you received it over 15 min the last time

  • lillyishere
    lillyishere Member Posts: 775
    edited February 2021
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    Thank you finallyover. I asked for 30min and I drank so much water before, during, and after the infusion that I was nervous if I had to use the bathroom while in infusion but lucky I was OK :). Someone mentioned that the second time it gets easier. Yes, I hate the IV so much and since starting letrozole I get bruises so easily.

    Do you feel less bone pain from zometa?

  • sunshine99
    sunshine99 Member Posts: 2,699
    edited February 2021
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    Good morning, my fine ladies! :) Here's my experience with Zometa, so far. My infusion lasts about 30 minutes. I don't have a port so they warm my arm before they start the infusion. The nurse always asks me if I'm planning any major dental work due to the possibility of ONJ.

    The SEs were the worst after the first infusion, especially at about 4 in the morning. By the time I was about 2 days out, I felt fine again. It may be because I get the infusions every month, that my SEs are really minimal now and my body is used to it. I highly recommend asking for some kind of anti-nausea med to take. (I also developed a bit of a fever the first time, but it wasn't high enough to call my MO.)

    I think I took a Claritin the day before and the day of the second infusion. It may have helped, but it certainly didn't hurt. I actually forgot about the Claritin after that, but it's worth asking your MO about it (or maybe ask your infusion nurse).

    I don't know that the Zometa infusion made my bones feel any better, but it's possible that it is keeping me from feeling worse.

    I printed out a Med Fact Sheet on Zometa and gave it to my periodontist. I see her every three months for cleanings. She doesn't do anything invasive like extractions or implants, but I wanted her to have the information. She and my hygienist were really appreciative. I found the Med Fact Sheet on the Scripps Portal.

    Hoping everyone has a good and safe Friday.

  • lillyishere
    lillyishere Member Posts: 775
    edited February 2021
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    Thank you for sharing your experience Sunshine. It gives me hope to feel better this time. Also, thank you for sharing the tip of warming the arm.

  • blue22
    blue22 Member Posts: 172
    edited February 2021
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    Hi All,

    Posting this here in case it helps anyone in the future. I am now ~ 48 hours past my first infusion. I am much better than yesterday, but far from normal. Yesterday I could barely get out of bed. Today I have been able to move around a bit, and work from bed, but I haven't tried going for a walk and don't want to do that without someone in tow. I hope by tomorrow I will be much better. If I didn't have a job where I can WFH with the camera off, there is no way I could have done any work. I've been eating mush mostly (Bob's red mill MIghty something or other cereal..) supplemented with fruit. We think it looks like the food in the Matrix... but it works for when you are not feeling well! ; )

    Good luck to future acid infusers!

    Blue

    p.s. Does anyone ever feel like the medication names come straight from a movie? Zoledronic Acid? Is that the stuff that drips from the Alien's mouths in Aliens? Or is that something in the IV when they make super heroes? AC definitely looks like something straight out of a Marvel movie.

  • sunshine99
    sunshine99 Member Posts: 2,699
    edited February 2021
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    blue22, you made me laugh about the medication names and descriptions. You are spot on!