Any Stage 3 taking Zometa with their AI meds?

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Comments

  • monarch777
    monarch777 Member Posts: 338

    Be sure to drink plenty of water. At least 3 quarts a day

  • monarch777
    monarch777 Member Posts: 338

    I'm reading posts about zometo is used for prevention of bone mets. It is used as a support med to treat symptoms of cancer-hypercalcimia, bone fracture. Prolia is lightweight if you have significant mets. Took prolia when none metastatic with stage 2 on femara. If your doctor mentions it to you he must see a need

  • preludesing
    preludesing Member Posts: 64

    Thanks for the advice ladies 😊😊🙏🙏 I really appreciate it....bless you all!

  • preludesing
    preludesing Member Posts: 64

    ok...did Zometa yesterday. Felt fine, even energetic the whole day. Then, BAM!! at 10pm at night, I start shivering like crazy,, temp spikes to 38.8 and my body starts to ache like I've been rolled over by a train. Blech. Had to take neurofen. Still aching and feverish this morning. hope this goes away quickly...


  • monarch777
    monarch777 Member Posts: 338
    PreludeSing, hang in there. My first infusion hit me the second day. Much like you. Drink plenty of water. I have an infusion every 4 weeks and each time theSE has lessened. I call it my clean up drug. it has gotten the hypercalcimia under control it and strengthened my bones. Especially in my spine and lower back. After my next infusion the onc says she can spread them out every 12 weeks . Hope you have a peaceful night. It will get better.
  • preludesing
    preludesing Member Posts: 64

    thank you so much JoE777 - just what I needed to hear...really appreciate your advice 😘. Stay well!

    Prelude

    xox

  • FarAwayToo
    FarAwayToo Member Posts: 79

    Prelude - how are you feeling now?

    My MO wanted me on Zometa as soon as I was healed from BMX, but I took some time to get clearance from my dentist - ended up extracting a tooth, and then took 2 months to heal from that at the advice of the oral surgeon. He examined me today and said that my jaw bone is fully healed and I can start on Zometa.

    I just had exchange surgery and prophylactic ovary removal last week, but I feel pretty good. Wondering if I should schedule the infusion ASAP or wait a few more weeks to fully heal from this latest surgery, I will send my MO or her NP a message.

    My MO wanted me on Zometa because of several trials that showed it to be beneficial in preventing bone mets, but I also have osteoporosis (in one of the hips, osteopenia in another hip and in the spine). I will be doing an infusion every 6 month.

  • preludesing
    preludesing Member Posts: 64

    Hiya Faraway...I am much better now nearly 6 days after infusion. I started to feel better about Tuesday after the Friday infusion. Wed was a little more fatigued than usual and today finally feeling a bit like my old self...

    Yeah I had both my bottom teeth extracted in March this year and a general dental clean up before starting Zometa.

    I would schedule the Zometa for a time when you have been feeling generally well for a weeks and are maybe 3/4 weeks out from surgery and are able to have a few days of rest after the infusion. Then have some Netflix, ibuprofen or panadol handy and drink lots of water if you can manage it to flush your system. I was literally shivering and hobbling to the bathroom and back the first night but it slowly improved.

    my Onc says I tend to get the worst of the side effects so your experience may be better than mine. I also suffered horribly with AC chemo. Lost 15 kg, was horribly nauseated all the time and had mouth sores, ulcers, blackened skin, crinkly skin, you name it, I had it 🤪....after that, Taxol was like a lovely walk in a shady park 😊...

    All the best Faraway 💐💐

  • FarAwayToo
    FarAwayToo Member Posts: 79

    Glad to hear you are feeling better, Prelude!

  • hopefour
    hopefour Member Posts: 104

    I have a question...I receive zometa every 6 months and have for 3 years. How long are some of you doing it for and is there a study that states how long to do it as a preventive. You Thank you for any info.

  • maryannecb
    maryannecb Member Posts: 74

    Hi I started Zometa 10 years ago when I ready about some early evidence for prevention of boney mets. My oncologist agreed as I alos had osteoporosis on my bone density testing. He chose to give it every 3 months...and is reluctant to stop it as he feels it may be why I am stilll disease free. I suffer bad muscle aching for 2-3 days but it is little price to pay. By the way, I am 13 years with NED.

    Fists up!

  • Dogwood1
    Dogwood1 Member Posts: 3

    I have my first Zometa Infusion today and start Arimidex when I finish radiation in a few weeks. I am wondering if you do have the side effects are they right away? I have a 2 hour drive home and have to work tomorrow and drive back for my radiation treatment tomorrow. Just wanting a heads up on what to expect.

  • anna-33
    anna-33 Member Posts: 108

    sorry for my late answear... I started zometa in january 2018....

  • sbelizabeth
    sbelizabeth Member Posts: 956

    Dogwood, I had one dose of Zometa before I was switched to Prolia. The evening of the day after the infusion was when I started feeling lousy. You should be ok for work/rads tomorrow. No guarantees, though!

  • monarch777
    monarch777 Member Posts: 338

    My SE doesn't show up until the next day but hangs around for about 10-14 days and is sporadic now. They decrease as time goes by. Been on a monthly infusion since March

  • humblepeace
    humblepeace Member Posts: 89

    Hi Dogwood1,

    I had an infusion on a Thursday afternoon around 2pm and I felt pretty well until bedtime on Friday night. I woke to get water and go to the bathroom and upon returning to be I began to shiver uncontrollably. It lasted for about an hour, I prayed the whole time. The shivering stopped and went back to sleep and awoke with some aches which I took Tylenol and it helped considerably. I have been okay since and it has been over a week ago.

    Hope this helps


    Hu

  • new_direction
    new_direction Member Posts: 40

    Im also doing zometa every 6 months. Flu like side effects only after the first infusion.

  • sbelizabeth
    sbelizabeth Member Posts: 956

    I saw my oncologist Monday and had my every-six-months injection of denosumab (Prolia). I had one infusion of Zometa in September 2015 and then switched to Prolia.

    Monday's shot makes a total of six doses of this class of drug, and my oncologist says I'm finished. All the benefit for bone health has been provided and now she wants to avoid any unpleasant drug side effects. I'm OK with it.

    At the same time, she wants me to stay on Femara for at least 10 years. If/when I come off Femara, I should switch to Evista.

    I'm moving from California to Colorado Springs next month, though, and leaving my beloved oncologist behind. Anyone have a recommendation for a great onc in C. Springs?

  • ssinuk
    ssinuk Member Posts: 63

    In the UK the Marsden marshalled research and got the NHS to agree to give Zometa as an adjuvant therapy to relevant women. Every 6 months for 3 years. It has a massive long life in the body so I was told the same after 3 years you have the benefit. My stage 4 friend had the same experience of bone mets stopped in their tracks and healed by zometa. She’s 5 years from a stage 4 sx and NED on zometa and tamoxifen. Everything crossed for her. I’m the same - first infusion made me feel terrible, no SE at all on subsequent doses.

  • FarAwayToo
    FarAwayToo Member Posts: 79

    Had my first Zometa infusion on the 20th. Only mild muscle aches for two days after. I did drink gallons of water and also asked for 30 min infusion.

    Yesterday (27th) I had a flu shot after 6 months follow up with my oncologist. She highly recommended the shot, as she says my immune system is still recovering from chemo etc. I felt so achy last night, both muscles and joints! Low grade fever as well. Didn't sleep well at all, waking up every hour and struggling to find a comfortable position. Sort of wondering if muscle/joint aches were related to how recently I had Zometa. Anyway, by morning all aches disappeared. I'm pretty tired and dizzy from not getting enough sleep though.

    I read some research that Zometa stimulates certain lymphocyte production, aiding our immune system in fighting cancer. Too scientific for me to understand all the details, but it made me feel even better about doing Zometa and feeling grateful to my MO for prescribing it right away.

  • FarAwayToo
    FarAwayToo Member Posts: 79

    sbelizabeth I'm in Boulder, and going to University of Colorado Hospital in Denver for all treatments. I like my oncologist, but no "LOVE". It's not too bad of a drive to Denver, depending on which side of Springs you are, so let me know if you are interested in pursuing Denver location, and I can give you the name of my onc and more info on why I like, not Love her in the PM :).

  • dodgersgirl
    dodgersgirl Member Posts: 1,902

    FarAwayToo- I received my flu shot last week and had the same side effects you wrote about. Never had a flu shot bother me that way. But the night of my flu shot, I couldn’t get comfortable enough to fall asleep and was sooo tired the next day.

  • FarAwayToo
    FarAwayToo Member Posts: 79

    DodgesGirl - it might be specific shot. I told my PT this morning how crappy I felt (I honestly was not sure if I would be able to come to my PT session), and she said several of her patients reported this.

  • stephilosphy00
    stephilosphy00 Member Posts: 161

    Hi everyone! I am not stage 3 and I am debating I should get Zometa or not to prevent bone mets. I have been on OS and Aromasin for more than a year, and my bone density is still normal but close to osteopenia now. Looks like the result regarding Zometa for bone mets prevention is conflicting? I am also not sure if the side effects and risk will outweigh the benefit. Any thoughts?

  • monarch777
    monarch777 Member Posts: 338
    My oncologist has never said zometo PREVENTS bone mets. I'm on monthly infusions. My doctor gave me a handout when I began treatment. It is a supportive care drug in the category of bisphosphonates. Used as a support medication to treat symptoms of cancer such as hypercalcimia or to decrease bone fractures or pain produced by bone mets. Zometo slows down osteoclast's effect on bone.(bone pain, fractures, high calcium levels) you can go to Chemotherapy Drugs-Chemocare and look at Zometo.
  • linda2119
    linda2119 Member Posts: 60

    sbelizabeth - I'm in Colorado Springs and I am happy with my oncologist at UCHealth. He is very compassionate and thorough - I'm very happy with his care. PM me and I can give you more information.

  • FarAwayToo
    FarAwayToo Member Posts: 79

    steph, I would talk to your MO. The absolute benefit is relatively small, and wasn't demonstrated for all populations.

    This BCO page breaks down stats pretty well: https://www.breastcancer.org/research-news/2011121...

    Keep in mind, that percentages are relative improvement, not absolute. So, when mentioning Austrian study, the page quotes 28% improvement, however, if you look up more detailed results of the study you will see that absolute improvement was 3.4% for DFS and 2.2% for OS.

    Also, most of these studies demonstrated benefit for starting zometa right away after surgery and/or chemo. My onc thinks there is enough evidence to suggest that Zometa is beneficial, but for me, personally, the choice was easy, due to confirmed osteoporosis.

  • 7of9
    7of9 Member Posts: 474

    I am 5 yrs NED with Arimidex and Zometa every 6 months. My onc thinks that the one I had 2 weeks ago (×10) sb my last. Seems we are doing something rights and I'm considering second opinion. Looking for other who have been on it or alternative longer than 5 yrs. I read about the one gal on it for 10 yrs. To consider I dont eat much dairy. :/