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Bone Mets Thread

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  • shanagirl
    shanagirl Posts: 646

    @norah2024 I’m glad you saw another oncologist for a second opinion. I feel that you will be ok to take the 10 mg every other day, rather than breaking it in half. My Verzenio is delivered in boxes of set amount of tablets and the instructions are very specific that the pill should never be split in half under any circumstances.. Your new Oncologist’s suggestion of every other day should be fine because these medications stay in your bloodstream at levels which fight the cancer and he’s watching your blood liver enzymes while you are on the every other day dose. I have had times when my own oncologist had me on a week off due to illness once and when taking antibiotics for a tooth abcess.. These temporary breaks due to special circumstances at the oncologist directions are normal sometimes and don’t seem to interfere with their efficacy and effectiveness against cancer..Take a deep breath and say a little prayer from your heart and trust that all will be well and your second oncologist will know how to treat these new issues by watching your bloodwork. Relax this evening and get some rest, girl.🩵🌷

  • norah2024
    norah2024 Posts: 151

    @shanagirl

    Thank you for this information.

    After reading several responses, I have actually become convinced that splitting the pill is not a good idea.

    I also feel very comfortable with my new doctor. He is very kind and even gave me his personal number in case I need anything urgent.

    Stopping the medication has been a big relief for me, because it caused many side effects. So when I stopped it, I felt that I really needed some time to rest, and this is exactly what my new doctor advised.

    Right now, the only thing bothering me is the unexplained fever that keeps happening, even though I am taking another course of antibiotics.

    Thank you for your kind feelings—they truly reached me and comforted my heart 🧡

    I will take a deep breath and say some of my prayers, where I always find peace whenever things become difficult.

    Thank you for your kindness and for taking the time to reassure me. Your words truly mean a lot to me.🧡

  • janedoe7
    janedoe7 Posts: 7

    I have Stage IV breast cancer metastasized to my bones - hip, ribs, spine. My PET scan results just came in; my SUV in my hip has been increasing a little every 6 months; after surgery and Ibrance it went from 12 to 1, and has increased with each 6 month scan to 1.6, 2.8, 2.8, 3, 4.7, and now 6. Anyone have any experience with changing medications? I see my oncologist in a few days and he will tell me what it all means. Just wondering if anyone else has experienced having to change meds because scan results showed increasing cancer presence.

  • tougholdcrow
    tougholdcrow Posts: 558

    @janedoe7 Treatments are becoming more targeted to specific mutations (ie. ESR1, PIK3), so it will depend on tests your oncologist will order (ie. Signatera, biopsy).

  • wren44
    wren44 Posts: 8,117

    Jane, it’s pretty common to change medications. I’m on my 3rd.

  • norah2024
    norah2024 Posts: 151
    edited March 10

    @janedoe7

    My situation is not the same as yours, but I’ll share my experience in case it helps or gives some insight into why doctors decided to change the medication.

    During the PET scan that I used to have every three months, the uptake was not increasing; in fact, it was decreasing. However, what kept rising steadily every month were the tumor markers (CA 15-3). This left my doctor quite puzzled and led me to undergo many additional tests.

    Eventually, the last scan showed disease progression in the tibia bone and some lymph nodes.

    At that point, my doctor decided to change my first-line treatment, which was Kisqali and Faslodex. I had been on it for only one year and three months, and it was replaced with Afinitor and Exemestane.

    I hope sharing my experience is helpful in some way.

    I wish you healing and that things go well for you. 🌿

  • tougholdcrow
    tougholdcrow Posts: 558

    @janedoe7 I hope your condition remains stable for a long long time.

  • shanagirl
    shanagirl Posts: 646

    U@janedoe7 it sound like you’ve had a good 4 yr run on the treatment you were on. I have been the same. 3 yrs on Verzenio Falsodex and XGeva. I hope this will continue to last longer for me . I too, am afraid uncomfortable having to change my whole treatment routine. From what I’ve read here this happens to many and they do adjust and get through the change of treatment and continue to do well. I’m saying a little breath prayer for you and hope you have a peaceful and calm day in in heart and mind.🩵🌷

  • gailmary
    gailmary Posts: 656

    Hi all. Just wondering if anyone here is taking just the prolia dose vs the xgeva strength for bones?

  • norah2024
    norah2024 Posts: 151

    hello ladies,


    Has anyone heard of this treatment that hasn’t yet been approved by the FDA, with approval expected in December 2026?
    The treatment consists of Giredestrant with Afinitor (everolimus)?

  • shanagirl
    shanagirl Posts: 646

    Good morning @norah2024 I haven’t made it over to this thread in awhile, but just wanted to check in on the bone mets thread. Happy Spring everyone. I’ve been thinking gardening thoughts these days🌷🪻🌸🌿. Also No, I haven’t heard of this treatment Giredestrant with Afinitor (everolimus) in the works waiting for approval by the FDA.

    Hi @gailmary also no I haven’t heard about anyone taking Prolia vs XGeva . I haven’t been here on BCO the last week or so. Good to “see” you again😊

  • eleanora
    eleanora Posts: 583

    @gailmary

    How often would the Prolia dosing occur? I've recently gone to an every 8 week schedule, but my MO was willing to approve an every 12 week schedule. I had found a "retroactive" study of a large number of patients that showed the same bone strengthening benefit on 4 week, 8 week and 12 week schedules. I decided to try 8 weeks for a while and then move to 12 weeks. I have no SEs from Xgeva, but always concerned about ONJ as I've been taking it for almost 4 years.

    @shanagirl

    I keep up with your posts in the living room, but good to see you here as well. I would love your input on a proposed treatment. Due to an unrelated medical issue requiring prolonged antibiotics, I was off Kisqali (but continued with Faslodex shots) almost 3 of the last 6 months of 2025. Resumed Kisqali at the 200 level at the end of December and am now back on my normal 400 level dose. Scans have shown small mets in 4 bone areas: left rib, L5, left femur and the left side of the vertebrae at C1. My MO and RO have recommended radiation (rib and L5 have already been completed) and staying on Kisqali. The femur and C1 are scheduled for radiation next month and I would appreciate your input on C1 as I know you have had lots of issues with your cervical spine. The RO assures me that the lesion is not near the spinal cord and he can eliminate it with a single dose. I otherwise have no pain or symptoms but wondering what you would so in this situation.

    @norah2024

    Someone in one of my support groups was in the trial for that and I asked my MO about it. She said that it will only be available to patients with ESR1 mutation. Since my recent Tempus testing showed no mutations, I'm still stuck (pun intended) with Faslodex.

  • gailmary
    gailmary Posts: 656

    Hi Ladies, @eleanora the Prolia and xgeva shots are the same drug chemically but the prolia isn't as strong as xgeva. My understanding isn't that xgeva just makes bones stronger but at that dose and frequency (1x per mo.) It makes the bone cells too slippery for the cancer cells to stick to the bones. I've heard many suggestions or guesses as to how it helps but it was not about making them stronger or replacing bone lost from the meds.

    I need clearance from dentist before starting xgeva again. (4 yrs every month previously) At this point I'm pretty much in remission but have osteoporosis in the spine ( my hips are great) so I may like to go on a lower dose to grow spine.

    My SIL had an awful experience with a bone strengthener. She had 3 spinal compression fractures and 2 other drugs didn't help. I forget which but the drug that you only get 1 x a yr. It practically paralyzed her 2 days after infusion. No cancer but bedridden . Therapy is helping her to learn to walk again. Scarry stuff.

  • gailmary
    gailmary Posts: 656

    @tallnterrific welcome to you. My goodness you've been through the wringer. These are a great bunch of women. So you are in the right place. Be sure to keep us informed . Many answers to questions can be found on the many pages here but don't hesitate to ask your doctor. Best of luck to you as you navigate the new world of bone mets.

  • tallnterrific
    tallnterrific Posts: 29

    Thank you gailmary! I appreciate your note. I do have a question about getting the biopsy. One of my oncologists is worried that the biopsy of my vertebrae T11 will miss the spot of cancer since I also have a lot of spinal degeneration in that area. He also has concerns that the biopsy could spread the cancer cells. Anyone experience trouble getting cancer cells in spinal biopsies or concern the biopsy may have spread the disease?

  • irishlove
    irishlove Posts: 772

    Hi tallterrific and welcome. I have bone mets from breast cancer. Ibrance targeted therapy has gifted me a remission for the last few months. If you had your biopsy on the 22nd I may be too late to address spread of disease. When I was biopsied for breast tumor, I feel certain that it caused spread. The first diagnosis of 2019 I was Stage 0, encapsulated and told it was nothing to worry about in the future. I opted for double mastectomy just to give me peace of mind. Well in 2023 that changed as I was full of cancer, lungs, bones. Speaking of biopsy from a bone, I can't really as I've never had that procedure. Hoping all goes well. Maybe someone else will have respond that did have a bone biopsy. Maybe try doing search on the subject here from years of threads dealing with this subject.

    Please let us know how you are doing and know we all care deeply.

    Irishlove

  • gailmary
    gailmary Posts: 656

    Oh gosh, I had a bone biopsy. Of upper arm. Piece of cake.but it was a huge lesion. But in a spine with concern of "missing it". And spreading due to it.

    I remember 40 years ago there was concern of "opening you up for surgery" due to causing it to spread. I can't imagine what they figured out to stop that but my dr said it as a concern but doesn't happen anymore.

    Have you learned anything more @tallnterrific

  • tallnterrific
    tallnterrific Posts: 29

    Irishlove thank you for your kind note and don’t worry you are not late. They have yet to call to schedule the biopsy. They were waiting on the thoracic mri for better information on size and location. Those results came on Friday and they haven’t yet called. I hope to hear on Monday. I will see my breast oncologist on Monday and can ask her. This was a previously scheduled appointment but very fortuitous timing. I am in agreement with you that prior to my biopsy for my primary breast cancer my situation seemed far less serious than it turned out to be once the breast was removed and tested. Turned out to be multi focal with three large tumors and “many” (uncounted) incidents of ductal carcinoma throughout that breast.

    Gailmary, thank you also for your comments from your oncologist. That provides some comfort about the bone. I know with my kidney biopsy last year it seems like there was some sleeve on the needle that prevented the cells from being drug through the healthy tissue. I am not sure how that works with core biopsy in bone that may come into contact with marrow.

    You are all so helpful.

    On another point, I live alone and I am in a second floor condo requiring 1 1/2 flights of steps to get to my level. It is already challenging to carry groceries up and garbage down. Can anyone speak to the issues I may need to consider once treatment begins if it is CDK4/6, xgeva and AIs? Will I have trouble managing on my own? I am 67 yr and pretty strong now but ??

  • gailmary
    gailmary Posts: 656

    @tallnterrific

    I cant see why you would have any trouble managing the stairs. Take down smaller bags of trash more often. Just don't fall.

    I'm 69 and have had bones for years and fell 2x in last 9 months. I am now having trouble getting up from the ground. Can't squat anymore. I did good damage when I fell. Twisted knee, broke ankle, ruptured disk too in there sometime. Untill then chemo and surgery were a breeze. It's difficult to ga4den like I used to. What's infuriating is when dh says 'well you're older now.

    NO it's not just age. I think the cancer drugs taking now make it all worse.

  • shanagirl
    shanagirl Posts: 646

    First I want to say Welcome @tallnterrific. All here are helpful and loving. I have been trying to post on this thread more often. I’m usually on the Husband My Life. My love My Family… thread. I know many from there jump over here and other threads too. But sometimes It’s hard to catch up with those ladies over there because it’s such a busy fast moving active thread, and I have to try and read along to catchup🥰

    @gailmary, I hate to fall. I took a really hard nasty fall early Tuesday Morning around 5:30.. Totally hurt myself, I look like I was hit by a truck I’m so black and blue down my shoulders and arms. I was already so miserable and unsteady from pain in my cervical spine neck bones and due for a radioFrequency ablation procedure that morning at 11 at the surgi center with my Brain Spine Neurologist. I and my DH made it here I had the surgical procedure and am feeling much better now, but I’m still so bruised. My Neurologist and anesthesiologist checked and cleared me of any concussion or fractures, and then they applied ice packs to my injuries prior to the procedure then started that wonderful sedative with the pain killing fentanyl IV then wheeled me in to the surgical room for my procedure. I’ve been so much better with my cervical neck vertabrae and haven’t even had to take the pain pills he prescribed. But because of my bone Mets and cervical stenosis, and the chemo pills and monthly injections of XGeva & Falsodex I’ve become a fall risk due to balance issues arising from all this crap. But my Neurologist wanted me to feel comfortable going down to Florida next Monday to visit my Grandaughter and her husband and her 2n baby boy Great Grandchildren, and also other family down there. In my mind I feel that this will be my last chance to fly down there due to stage IV cancer Mets to my bones, and my age. I just turned 77 2 weeks ago. Geesh, I’ve been battling this breast cancer crap since 2009. So my other lady girl friends dear sweet @threetree @tougholdcrow @irishlove @norah2024 and any whom I’ve missed have a safe painfree peaceful evening my loves and again welcome to you @tallnterrific 🩵🌷

  • gailmary
    gailmary Posts: 656

    Oh no, Barbara. So sorry about your fall. Good thing they checked you over. Those bruises can be bad enough. I hope the ablation is effective for your stenosis a good long time. Isn't it bad enough we have to deal with all the cancer mess that we don't get a pass from all the everyday getting old stuff?

    I've been going since 2008 and feel blessed in so many ways. You must too. You just may get to see the grands and greatgrands a few more times.

  • tougholdcrow
    tougholdcrow Posts: 558

    @tallnterrific I am not sure what physical challenges you are facing, but if you are in decent shape you should be fine with stairs. I have been on Kisqali and letrozole for more than two years (following 5 months of chemo) and I do have joint pain that I can't just blame on old age. I try to do as much exercise as I can to keep everything from getting worse. I do balancing exercises through Pilates, but I am sure even gentle yoga would help with that. I know many people around my age who have fallen, who don't have cancer, so balance becomes a concern for everyone at some point. I walk a lot, and tell myself that I can always put one foot in front of the other, as humans have for millions of years.

    So nice to hear from you, @shanagirl Barbara, and sorry to hear about your fall. You have been dealing with so much over these past few years, and it must be so hard to be in this constant pain. I would find that emotionally challenging too. But you keep on keeping on and I greatly admire you for that. Surround yourself with love because at some point that becomes the most important thing in the universe, right?

  • tallnterrific
    tallnterrific Posts: 29

    @tougholdcrow @gailmary @shanagirl thank you all for your help. I just wasn’t sure what to expect and you have assured me I should be ok. @shanagirl i am so so sorry to hear about your fall. It sounds terrible. I am just glad you were able to have your ablation treatment so you could travel more comfortably. I hope you have a great trip to Florida!

  • eleanora
    eleanora Posts: 583

    @tougholdcrow

    @gailmary

    @shanagirl

    Add me to the group of those who've had a bad fall. Mine resulted in a trip to the emergency room for CTscans and xrays, as I was terrified that I might have damaged my right hip replacement. I also have osteopenia (improved from osteoporosis thanks to Xgeva). Thankfully, no permanent damage, just lots of painful bruising and swelling.

    My status has been uncertain for the past few months. After 3.5 years of Kisqali, it was removed from my treatment for a total of 3 months between June and November, 2025, while I was treated with various antibiotics to cure repeated bouts of diverticulitis. Took months before someone recommended an infectious disease doctor, and that treatment was successful. I returned to Kisqali in December at 200mg for two rounds, then increased to 400 mg. My MO felt strongly that I should switch to Verzenio but I was very concerned about the severe diarrhea after what my GI tract had recently experienced. I persuaded her to wait until after my scans at the beginning of April, which thankfully showed only 3 small Bone mets and abit of growth on an existing bone met.

    So relieved to still be bone only. Two of the mets have been successfully radiated and the other two are scheduled for radiation on May 26. My MO has agreed to stay with Kisqali and my second opinion MO at Johns Hopkins concurred. The only open question is whether to stay with Faslodex or switch to letrozole. The Johns Hopkins MO supported this, but I don't see my MO until June 1. If anyone has any experience or opinions to share, would love to hear them.

  • sunnidays
    sunnidays Posts: 199
    edited May 10

    Has this happened to anyone else? After 5 years on Ribociclib and letrozole, I was having more frequent pain in my hip area, so my oncologist ordered an MRI. My oncologist said I probably have progression, but the oncologist couldn't be definitive; tumor markers don't seem to work for me, as they have always been in the normal range despite having metastatic breast cancer.

    I was referred to a radiation oncologist. I am going to have 10 sessions of radiation. Two months before the MRI, a CT, and a nuclear bone scan said I was stable.

    The radiation oncologist was very good, showed me my scans, and explained why, with bone metastasis, it can be difficult to be definitive about progression in some cases. Still, in his opinion, I probably did have progression, and that 10 sessions of radiation will help with the pain. I still dont really understand it.

    No change of treatment at the moment.

  • tallnterrific
    tallnterrific Posts: 29
    edited May 11

    @eleanora so sorry to hear about your fall. It sounds painful. I also appreciate hearing that there is comfort in seeing the mets restricted to the bone. I have just learned the results of my biopsy and it is positive for ER/PR breast cancer mets to my spine. It looks like the HER2 results are equivocal so the sample has been sent for FISH testing. I am just facing the reality of stage 4 so seeing your positive remarks gives me better perspective. Thank you for that.

    Following my biopsy I have been having intensified muscle spasms in my back that make it more difficult to do the things I am used to doing. I was wondering what you all recommend for pain. Should I just wait and see if it improves using NSAIDS and a lidocaine patch. Or will they want to take more serious action like radiation, ablation etc? Oh just a note I am one week out from the biopsy so probably still healing.

  • threetree
    threetree Posts: 2,586

    @eleanora - I had no idea you had taken such a fall like that. They are scary indeed. I took a bad fall in September of '24 and fractured my shoulder and a couple of ribs. Fortunately, I was able to continue with the Verzenio and Fulvestrant that I was taking at the time. I just want to mention that re Verzenio and diarrhea, I did not have that big problem that so many do. Never had to take anything like an immodium. I eat probiotic fresh sauerkraut and Greek yogurt everyday, and I think those two things have saved me from a lot of the gut problems that these drugs can cause. You might want to consider some diet ideas if you are worried about diarrhea being the only thing that might prevent you from switching to Verzenio. I did have a lot of "gut annoyance" with Verzenio though; things like rumbling and grumbling and some intermittent here and there pains, but never diarrhea. Just my two cents here. Yes, being bone only is a relief for sure. I unfortunately went from that to also having liver mets, and I would give anything to be "just" bone only again. Well, here's to success with whatever you decide to do, and I am assuming that you have recovered from the fall?

  • eleanora
    eleanora Posts: 583

    @tallnterrific

    I began with a diagnosis similar to yours and so far have only bone mets (but lots of them). The muscle spasms may well be part of healing from the biopsy, but they could also be from your muscles reacting to the fact that there is cancer in the area. I have had several instances of severe muscle spasm in areas where bone mets were diagnosed shortly after the spasms began. One of my most helpful doctors is my physiatrist and I would recommend that you look for one. They are often part of an orthopedic practice, but specialize in muscles, ligaments and tendons that surround the bone. I have had such severe spasms in back muscles that she has injected the areas with lidocaine. She also prescribes muscle relaxants which I can use on an "as needed" basis, as well as PT. She communicates with my MO so my treatments are coordinated.

    @threetree

    Thanks for the empathy regarding my fall. I am fully recovered. Your comments about diet to forestall digestive issues are spot on. I eat greek yogurt every day and I think that helps, but fermented foods of any kind cause other disgestive problems for me. I am a life-long vegetarian, so fresh fruits and vegetables are a big part of my diet, and I try to balance them with immodium and starches to manage the GI impact of Kisqali. I see my primary MO on 6/1 to discuss whether treatment change is necessary, and will keep you posted.

    I saw on the living room thread that you had your computer repaired! That must be a huge relief. I look forward to hearing from you more often.

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