Bone Mets Thread
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Sunnydays, I don’t know the longest but a lady at my cancer center was 25 years with bone only mets when we had a regular group meet up before covid. I saw her there last month and she’s still doing well. I don’t know about her medication though, I think she’s ER+ and got to NED as part of an old trial.
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I went for the simulation for my hip this morning, and found out they want to radiate the L2 also. I guess the RO thinks some of my hip pain is radiating from the met on the L2. Can anyone tell me about spine radiation experiences? I’m nervous about what organs will be affected, and if it makes my spine even more fragile. Thank you
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Has anyone had radiation to their T9? I would love to hear your story and if you felt it relieved pain. I am getting flank pain and they believe its from the T9. Any info is helpful.
Thank you so much!
Deb
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I would be interested to hear how everyone is doing on the different chemo combination. I just listened to a podcast about the new oral drug - I think it is called Elecastrant or something similar. They said if a person lasts 18+ months on Ibrance without progression, they would be a good candidate provided they were still ER+. That buys more time. My younger brother lives in a foreign country and has some contacts in the medical field - specifically those studying mRNA technology in regard to breast cancer. I look forward to hearingwhat he finds out there.
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gigil,
Elacestrant is an oral SERD that hopefully will get FDA approval in Feb 2023. I believe it is a hormonal treatment, not chemo.
In the phase 3 Emerald Study it "demonstrated significant PFS improvement vs SOC" for women who had progressed on an AI drug or fulvestrant. It was even effective for women with the ESR1 mutation.
"Subgroup analyses showed that elacestrant improved outcomes regardless of the presence of visceral metastases, the number of prior lines of therapy, pretreatment with fulvestrant, or geographic region."
My MO thinks the PFS is modest. But Dr. Aditya Bardia, who has both written about and discussed this drug and the Emerald study, seems to have a favorable opinion, at least that is my impression.
I have my sights set on this drug for the future.
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Believe 60 and Deb,
I had a lot of radiation treatments to my mid spine where I had corpectomy and fusion and to my back rib where there is pathologic fracture. I'm still numb over the middle so it's hard to tell about pain over the spine. The goal was to stop the cancer and there hasn't been any progression on scans for over a year so far. I think the pain was helped some over the rib but it still hurts sometimes. The only damage I know of is the lung area right under the rib has some radiation damage on CT. They said it didn't look like Mets. Called it thickening and subpleural opacity. I had a little sore throat for a while and of course a burned area.
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thank you mkestrel did you have T9 issues? I have intermittent numbness and flank pain right side. My scans are clean except for this met. The pain under my right rib either comes from front to back or back to front.
Wondering what the T9 pain feels like?? Thank you for your earlier response, hope you’re doing well
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I have been on Xgeva since diagnosis-- Nov 2017. So 5+ years now. I started on it monthly for the first year, then went to quarterly. About 6 months ago my MO changed it to every 6 months (due the end of this month for my next shot).
Is anyone else on Xgeva Every 6 months? I wonder about changing to Zometa instead. I asked my MO about Prolia and she said that Prolia is used for osteoporosis not MBC.
It is not that I don't trust my MO, but I wonder if she could be not wrong/ but not right about Xgeva being used in this way, every 6 months.
Thoughts...
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If anyone who has had hip radiation reads this, how long did it take for the hip pain to subside? I had the met right in the socket, on the acetabulum. Had 5 rounds of radiation. I am so ready to get walking more again.
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Candy, Mel perhaps may know? She seems to be on the extended monitoring plan with just the one scan and visit every year, surely she cant be getting Xgeva all that often either?
Edit - you may be right to challenge her (or she got the two types confused), this is what it says from a reputable UK source:
https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/denosumab
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Sondra-- Thanks I will ask her.
Anyone else with thoughts about this??
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I don't know about the dosing, other than I was switched to every 3 months before I went off Xgeva, but my thoughts about choosing Zometa vs Xgeva is that Xgeva has fewer side effects and better results.
Some studies suggest Xgeva actually may help stave off progression in the bones.
And here is a study I came across about dosing, I only skimmed it & I did not see a six month interval mentioned but I might be wrong since I did not read carefully.
https://pubmed.ncbi.nlm.nih.gov/33488782/
Here is the conclusion from the dosing study (and I did notice they consider “long interval” anything 12 weeks or greater between doses.
Conclusion: Extending denosumab dosing intervals does not appear to negatively impact time to first SRE and is associated with fewer hospitalizations in real-world patients with solid cancers and bone metastases.
SRE is ‘serious reportable event’ so fractures, I think
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Candy, As previously mentioned I'm also on 6 month intervals for Xgeva. No problems noted. My next scan is in March. So hopefully this was the right decision. MO did not feel the prolia dose was appropriate for MBC. Why are you second guessing the dosage
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Candy - I’ve been on XGEVA for a little over 3 years. I asked my MO at my last appointment if I should reduce my shots to every 3 months from my monthly shots. He told me that since I have to come in monthly for my Faslodex shots anyway that he wanted to leave me on monthly and did say that XGEVA does seems to be beneficial for helping against cancer progression. Otherwise, he would have dropped me to every 3 months if I wanted. I’m not sure if he drops anyone down below every three months or not
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candy— I don’t have an answer for you. But, I wanted to thank you for posting your question. I have been on XGEVA every month for over 3 years. I read so many other posts about MOs moving patients to every 3 months. I wondered if I should ask MO that question?
Your post brought answers about what others are experiencing.
I hope you get the answer you are seeking. I will lurk and learn.
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Thanks everyone.
Olma- Thanks for the links. I think I have also heard not only does it prevent fractures but can prevent bone progression also. I did not know about Xgeva having less side effects. That is good. I have read that Xgeva is more expensive, and most insurance companies want a person to try Zometa first and switch to Xgeva if they cannot tolerate Zometa. My insurance at the time of diagnosis did not stipulate that. I started right on Xgeva. I have changed insurance a few times since and have never had difficulty getting Xgeva paid for. I have not found any articles that suggest anything longer than 3-month intervals.
Tinkerbell- I am second guessing my MO as I cannot find any literature to say that moving Xgeva to 6-month dosing is recommended. I cannot find anything saying longer dosing but 3-month Zometa. So I wanted to ask this group if anyone was getting Xgeva, or even Zometa, less frequently than 3 months. Especially if they are stable on scans. The longer we live with MBC I just wonder if we continue getting these meds every 3 months indefinitely. I read that they stay in our system for a long time. Can they do MORE harm? Bone issues, jaw issues, kidney issues, etc.
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candy - I’m on Zometa but share your concern of determining when these meds are doing more harm then good. It’s frustrating that there is little information on how to know when the scale tips and we are now doing more harm then good by taking these drugs. How do we determine when the risk becomes greater than the reward? I guess no money is set aside for studying this as there is no money to be made by discontinuing a drug. That’s sad. I’ve read that in some cases, long term use can actually make your bones more brittle. But what is considered “long term”? And since our bodies all react differently to these drugs, I wish there was a test threat we could take to help us determine if/when to stop taking the bone strengthening drugs.
The oncologist in this LBBC session also makes mention of a rebound issue with xgeva. You may find her comments interesting. https://youtu.be/YpFfLrITfEI
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I've been getting Zometa every 3 months for 3 years. My MO recently told me that after 3 years, she usually changes the interval to every 6 months.....I assume to reduce the possibility of side effects like jaw bone necrosis and spontaneous femur fracture. My MO says it helps control pain from bone mets.....but if I didn't have MBC I would NOT be taking a bisphosphate.
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believe60 - the aches and pain stopped about two weeks into radiation; however, my hip is still tight and uncomfortable, perhaps due to the radiation itself, or perhaps due to changes in the bone. My cancer also resulted in a very small fracture at the acetebelum that seems to be slowly healing.
candy - I get xgeva every three months, but I do remember my MO said there was a reason she preferred it to Zometa. I wish I could remember what that was!
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Candy: I also question my MO, actually about everything, lol. MO is a generalist, meaning she is not a breast cancer specialist. However, this may be in my favor for she knows a lot about Xgeva, prescribes for several other diagnoses besides MBC. After 3 years MO believes more harm than good starts happening, brittle bones, ONJ, fractures, etc. Actually, MO wanted me off this drug, but I feared rebound so she agreed with hesitation, to 6 months. I also can't find literature to support a 6-month rationale, but I'm going to go with less is more in this case if bone met is healed or stable. If I would have bone progression, then I would go back to monthly or 3-month schedule. I would appreciate if you found out anything different, please advise when you see your MO. thank you.
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believe50, I wish I could remember how quickly the pain in my hip subsided after radiation. You know how when something stops hurting you kind of forget about it? Anyway, it did help tremendously with the pain. I just don't remember how long it took. I don't think it was very long, though.
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My MO said she recommends the Zometa infusions every three months for two years and then stop. There's a recent study that indicates a slightly greater chance of ONJ with Xgeva, but also a lower incidence of fractures. Argh. Just hoping it will work for me, but interesting how many different MO opinions there are...
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Believe60 - I have had rads to the pelvis and the right hip for mets. In the case of my pelvis I felt relief within two or three sessions. My right hip was radiated post-surgically after a rod placement so it's harder to estimate that but I would say that within a few months post-radiation I was noticeably less painful. That said, my hip/leg on that side has never not hurt ever since mets developed. It's more tolerable now than it was though.
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Thanks for the good discussion. I see my MO Jan 30 and am scheduled for Xgeva right after my appointment with her. I will talk with her, but I am leaning towards stopping Xgeva (maybe a "vacation" from it until when/if I have bone progression). I sure won't miss the poke. I still get Lupron injections every 3 months to shut down my ovaries. And I really don't want to go thru surgery to remove them.
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Hi all,
I haven't posted in a while. We are having strange weather here in Northern California and my power and internet were both out for a few days.
Candy - I had my ovaries removed. It was a fast surgery. Outpatient. If I remember correctly, it took about an hour and a half total. I was not supposed to drive home and not drive for 10 days after - but my gyno told me that I could drive sooner if I felt safe and had no pain.
My MO had me on Kisqali and Letrozole - but I was having all kinds of side effects. Everyone assumed that it was from the Kisqali - so she removed that and has ordered Ibrance (which is on backorder - grr) so right now I am only taking the Letrozole. But the side effects have not stopped. I don't know if they are from stopping the Tamoxifen that I was taking before the Kisqali, or stopping the Kisqali (I was only on it for one cycle) or from the Letrozole. They are not unbearable and taking Claritin usually helps. I am just concerned that if I am allergic to any of the meds - my body is not allowing them to work. Does that make sense??
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I stopped Xgeva abruptly and have not had any problems with rebound effects. Your mileage may vary
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I have been rereading your posts about Xgeva/Zometa. And thinking about it.
First, I am wondering about continued use of these drugs causing more harm than good over time. When do we take a break from them, no pun intended? Do we just continue with them indefinitely? How do we and our MO's decide to stop them? I am leaning toward stopping Xgeva for now, as I am stable. Less meds the better.
Second, and why I posed this topic in the first place, is the question of if XGEVA specifically should be given in 6 month intervals. The literature I read says Xgeva is given monthly. Some of you are using it every 3 months. Tinkerbell and I are the only 2 here (that responded) that are using it every 6 months. (I messaged Mel and she gets scans yearly, but goes for Xgeva every 3 months). I worry that with how the drug works in the body that every 6-month dosing may not really work, or even cause harm somehow. Maybe I should be changed to Zometa, and then use it every 6 months. .... But if 6 month Xgeva is ok with the experts, then ok, I will be ok with it.
I plan on posing all this to my MO at my Jan 30 appointment. But I don't know how well received I will be, as she likes to keep my appointments short and just discuss my latest scan results and move on. I will need to have my thoughts/ opinions concise and not belabor the points. We don't spend much time discussing literature and research.
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candy,
I get a similar response from my MO - 15 minute appts, focused on scans or treatment, very brief explanations, quickly shuts down discussion of broader questions, usually defaults to "that's my protocol or the department's protocol", end of story. Frustrating and not at all patient-centric. One approach might be to ask for a referral to Endocrine. Your doctor might not like it, but she'd get the message that you have questions she isn't addressing. Another approach that worked for me: I had the moderators of this website take an interest in questions I had regarding blood biopsies. They did a search for latest info on the subject and posted it under the "Learn" section. Perhaps send them a personal message with your questions and see what they come up with.
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Candy678 - I have been following this discussion also, thank you for the info. I'm on Xgeva monthly and have been almost since my stage IV diagnosis 3 years ago. I have it on my list to ask my MO about also. I always assumed the side effects I had were from the Faslodex but I worry about the osteonecrosis of the jaw and fractures also. It will be interesting to see his take on it. Like you said, what's the standard, just take them indefinitely and is that the best long term benefit?
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I also get XGEVA every six months, as I recall my MO said that is the frequency given for osteoporosis treatments...
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