Bone Mets Thread
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Hope, were you able to see the information I sent that you wanted about the Practice Update site?
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BevJen, I started Xgeva monthly in 2015, but after a year or so asked my MO to move to every three months, based on someone on this site (maybe Jensgotthis?) saying UCLA was doing this because of the ONJ risk. She had no problems with that. I've had a couple crowns replaced while taking it but wouldn't try anything more invasive
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Thanks to all about the conversation regarding Xgeva, etc. I just don't think my doc is going to budge bc she is SOOOO research driven -- she does not go outside of the box at all, which could be a problem as live goes on.
I will start the infusions every three months, but if I get the bad side effects, I'll raise it again in favor of the Xgeva.
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Bevjen bit of info for what it’s worth I have taken Xgeva since 2016. At first every month then I rang Amgen to ask if 3 monthly was ok? They took all my medical details but would only talk to my Onc re their scheduling grrr Anyway my Onc spoke with them and they had carried out a small trial that said 3 monthly dosing seemed to work. Onc felt that monthly for a year or two was best and then go to three monthly which is what I have been on since the end of 2018
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I am getting Xgeva monthly since January 2018.
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Thanks for all of the info about Zometa and Xgeva, once again.
Has anyone had a discussion with their oncologist specifically about whether or not this would HELP with bone mets or further development of bone mets? Dr. Brufsky's presentation at the MBC conference last weekend seemed to indicate that he thinks there is some net benefit to use of a bone strengthener for bone mets -- if anyone watched his presentation, he was talking about enclosing osteoblasts or something like that (I should re-watch to get this). He also talked about how use of bone strengtheners can assist in not having skeletal-related events that could debilitate someone with MBC.
I was on letrozole for a out 14 years and now on faslodex. During that time every bone density test I had showed great bone density -- my MO at the time used to say that I had the bones of a teenager (as if!) So I don't want to invite trouble with going on one of these.
Also, has anyone discontinued because of persistent side effects (with either drug)? I know it's hard to separate out what drug is causing what side effect, but has anyone identified anything in particular? I saw the info about nausea after the first shot with Zometa.
Thanks much.
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Hello ladies. I hope everyone is doing well. Please share your experience with me, I am hoping to see response from you:
I have multiple osseous metastases in my spine. When I got first mri back in October, it said the lesion is spreading into wall and epidural space, the MRI said “No definite pathologic fracture is seen at this time“ but 3 weeks later pathological fracture happened, I should add I just started zometa. But the only treatment I received was radiation therapy. I did not get a specific treatment for stopping tumors entering into spinal cord or remove them from the cord space. Wondering if there is any treatment for this disease? Have you heard or anyone has same experience? the following-up mri showed the same disease is happening in another 2 spinal bones, lesions extend to posterior wall, with the same interesting quote “No definite pathologic fracture is seen at this time“ !! Really?!! But it might happen at another time, dude! I talked to my onc what treatment is available for bone Mets, if zometa is not working for me, he switched to xgeva.
I am worry if fracture happen again, spinal bone fracture is not easy to tolerated, on top of that spreading cancer into cord makes the disease much complicated. I am shocked why oncology team do nothing. Please share your experience with me and if you know some treatment for this disease. Thanks 🙏0 -
BevJen, it was my MO who brought up to me discussion of bone strengtheners helping to stave off bone mets as additional benefit for taking them. I haven't had further progression in my bone thus far, so I'm hoping it's true.
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I am popping to say that my MO thinks that my long time use of bone strengtheners (biphosma..sp) thru the years for osteopenia/osteoporosis made my bones inhospitable to bone mets. Plus, I was a runner.
Of course, my liver welcomed breast cancer with open arms...0 -
SandiBeach, that seems to be my case, too.
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Me too Xgeva 2 yrs monthly then 1 year quarterly. Yes dr told me its excellent at keeping cancer out of bone. I checked the studies and they were very encouraging. I do wonder if it means it will like another site just fine, like the liver. So far so good here.
Re calcium. Dr told me to stop wasting money and that sudies show a body won't absorb it from pills. Must be from diet. My calcium levels are always good. But he also said magnesium supplements are equally important for bones. And yes D3. Mine has been low for years. Wish I knew 25 yrs ago and I was outside alot.
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BevJen, I have been on Zometa quarterly for four years. I have very minimal aches the next day, but that is it. I do take an antihistamine the day before and day of the infusion which seems to really help. Otherwise, it has been good for me. I just recently had a bone density test and it came out great. I have no teeth troubles although I am suspecting a cavity and need to have it checked when my dentist is more available. My last cavity was taken care of easily a couple of years ago.
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does anyone watch Dr Brufsky's session? Is there any link so I can watch, I am hopeful I can get my answers by watching the video, I am so worry about my mri results
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Hi Julia. Try this link and scroll down to the second session: https://metsconf.lbbc.org/en/hall#topics-tab
Edit: I just tried it and you'll also need to click the Auditorium tab, then the Center Screen "Click Here to Get Started" link.
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Thanks Bliss for the link and instruction. I see other presenters also providing usinformation in this link. Goooooooood it helps cope with insomnia 🙂
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Questions for you bone metsters:
Has anyone had a radiation oncologist look at all of your scans together to come up with a comprehensive overview of what they see? I know that when you have a scan, let's say a CT, the radiologist reading that new scan will look back to the most recent CT and sometimes another relevant test or two. (How do I know this? because they say this on their reports -- but also they sometimes pick up the language of the preceding report.) But I'm wondering if anyone has had a more comprehensive view of their scans?
Here's why I'm asking: I want to have an RO look at ALL of my scans together to determine whether or not SBRT would be appropriate on any of my bone mets to zap them away. I don't really have pain other than intermittent pain when I've overdone stuff-- I know they will treat with radiation for pain -- and as far as it appears, all of my bone mets are sclerotic. I just want someone to focus on the last two years, say, and tell me what they see -- aside and apart from those written reports that we get. I know for sure that my MO only reads those written reports -- I doubt if she's ever looked at an actual scan that I've had.
Thanks for any info you guys can provide.
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BevJen, I'm pretty sure that's what they normally do- when I consulted an RO, he pulled up my scans and zipped through them showing me different things and commenting on what he was seeing, and he then checked and looked for certain spots or regions on earlier scans to see if/how it was changing- my MO had never done anything like that; she just reads whatever the scan summary says. If you guys decide something ought to get zapped, the RO needs to comment on pain to the area for insurance approval; in my case he also ordered an MRI, which much more clearly localized the position of the spine met
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Thanks, Cure-ious. I thought that's what they would do, but my MO has been dragging her feet on this, and so I'm trying to light a fire under her to get me connected with an appropriate MO.
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Hi BevJen,
As Cure-ious indicated, I believe that they typically look at multiple scans. For instance, my RO has commented that my bone scans could be that of someone without metastatic disease, someone like herself, but my CT scans? Mets all over the place. My MO also looks at the scans in addition to reading the report - he's specifically stated this in my appointments. I was surprised that your MO does not - oncology is part art and part science and it seems that my team is less likely to take things at face value, weaving together a picture based on scans, symptoms, bloodwork, etc.
As I think I mentioned, I've only had radiation recommended for pain management to date. It's not an insurance issue here as it is all covered under our provincial health care. My understanding is that, with the exception of cases where there is a single (or a few) bone met(s), there is no evidence that radiation is of benefit. There are also concerns about zapping things too soon as there is a limit to how many times you can treat an area. (I have mets at the base of the skull which have caused some symptoms. We were looking at zapping them but I prefer to watch them for now for that reason - that and potential impacts from the radiation which can be significant. Thankfully Verzenio seems to have helped as the symptoms have lessened in frequency.)
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and just to clarify, I have extensive bone mets but two places were heating up so we zapped them- and apparently that has scared the rest into submission, at least for the moment.. so that is another situation where targeted radiation could be used; my MO says she's suggested it a couple of times. No guarantee that a bunch of new spots won't pop up on subsequent scans, however...
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Thanks to both of you.
I don't have a radiation oncologist on my "team." I don't have a "team," and this is at a HUGE cancer center, supposedly one of the best in the US! I have an interventional radiologist who I found. He doesn't know my MO and she doesn't know him. My MO is the head of the breast cancer center. She has an NP who subs in for her periodically. There is a pharmacist who is assigned to the breast center. I asked my MO about an RO who my original RO recommended who is supposedly head of radiation at the mother ship -- and my MO said she didn't know him. My original cancer was in 2003, and my RO from them is in the throes of retirement. So I am just trying to figure out how and when to get other doctors involved.
Interestingly, here I'm being treated at supposedly one of the best cancer hospitals in the US, and they are all so in their own little worlds that they are not truly integrating care.
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Well, don’t want to imply that it is seamless. My MO is my “primary” physician who refers me to the RO as needed. However, she (RO) has indicated several times that I am free to reach out to her if I need her. I think the key here is that my MO is very clear that he does not have all the answers and doesn’t presume he can make the call with rads.
In reading your post, I think it may be helpful if you craft a compelling story as to what it is you hope to achieve with SBRT. In the absence of symptoms and with mets elsewhere, you have a bit more work ahead convincing the docs that radiation will improve outcomes. I’ve found that pointing to peer reviewed research is most effective in terms of presenting a case. Although I have to say, your MO may come back with a counter argument. Mine did with regards to genomic testing but he made sense and put my mind at ease in terms of feeling I wasn’t doing enough. He’s a pretty awesome MO though - completely happy to review any literature I send him and very accessible.
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yes when I went for my radiation consult, this exactly what the RO did. I even had questions about my pre treatment PET scan and what exactly was found and he pulled it up and showed me, and compared with the current scan.
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Thanks, Olma. Did you set up/ask for a radiation consult or did your MO suggest this?
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Julia, since you are taking Ibrance, Femara (with Zoladex to shut down your ovaries) and Zometa, you are getting the current standard of care for hormone positive bone mets.
Blocking CDK 4/6 will help keep tumors from invading the space around the spinal cord and your aromatase inhibitor cuts down the estrogen supply the cancer cells were using to grow. If resistance to these agents develops as shown by worsening symptoms or new spots lighting up on a PET scan, it might be time to change treatment.
Until then, know that your doctors are there to answer your questions - ask them to explain your therapy and what to expect down the road. Hopefully, you will be their patient for many years so they need to be sure you understand these complex situations!
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Hi all. Cross-posting to see if anyone has heard from Andi67?
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BevJen I watched it once and I will definitely watch it again, I just got my biopsy report today. I am still ER+/PR+, HER2 neg. diffuse mets to bones only. Nine years after the original tumor and I was just starting to think I might be in the clear. Now to wade through treatment options...
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BevJen , my MO referred me after I had a scan and one met had become active after I had been NED
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First, let me apologize for saying that I have not been through this thread yet. I have been thinking a lot lately and want to ask my questions, and then I will definitely go through and read your stories.
I have a long story, so I'll try to make it as short as possible for now.
I was in a car accident in 2013. I had an MRI, and when I went to the doctor for the results, he hit me with the thought they had that I had multiple myeloma because of extensive marrow-replacing lesions in my spine. Had blood testing for MM. All came out negative. Just went on living life.
Fast forward to 2016. Had another MRI because I was still having pain. Same result. They again thought I had MM. This time I had a bone marrow biopsy. Came out negative for MM.
I'd like to know for those of you who have it in your spine, how did you find out? Did they do biopsy or imaging only?
I now have breast cancer metastasized to my stomach. I can't help but wonder if it started in my spine first. Knowing what I know now, I may ask for a second opinion on my previous scans and ask for a new one of my spine.
The thought of this possibly being there since 2013 is really getting me thinking.
Imaging for breast cancer, even in my stomach, doesn't show it. I have ILC. I've had three endoscopy biopsies that show I have it in three places in my stomach. CT scans don't show it. PET scans don't show it. Bone scans don't show it. The only time they thought I had metastatic disease of any kind was when they did the two MRIs.
One more thing. When I went in 2016, they did tumor markers. I didn't worry about them because they didn't seem concerned. I had CA125, 19-9, 27-29, and 15-3, and all of them were above normal.
Thank you for any insight you can give me.
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KBL, I was first diagnosed with BC in 1991. After 26 yrs, and having had CMF treatment in 1991 and 26 yrs of first Tamoxifen (12 years) and then Evista (14 yrs), I was diagnosed with MBC to bones only. I had a CT of my chest for something entirely unrelated, and multiple sclerotic bone lesions were seen on the scan. I had an immediate bone biopsy which determined MBC.
Good luck to you
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