Bone Mets Thread
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Gailmary, that's great news!!
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HI everyone
I was just diagnosed with mets to the bone. I went in for a possible appendicitis and was sent to the ER where they CT scanned my tummy and found a cancerous looking mass in my ascending colon along with a few spine spots. FF a month it was mets to the bone and colon (rare) which required surgery.
I start my oral treatment next week after my ovary/tube removal. I am not signed up for any radiation yet, I understand it is done when there is a constant pain. I was surprised how many places the mets showed up in my bones, ONC put in for an xray to check my femurs for fractures. She doesn't expect to find anything but then again we didn't expect to have a mass in my colon.
I look forward to connecting to everyone here. I hope everyone has a relaxing/fun Sunday.
Tigre
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Tigre, welcome. This has been a wonderful place to hang out with people who understand. The word "metastatic" was such an astounding word to me. I kept reading my report over and over again. What??? Me??? Stage IV???????
Next, came the "OMG, I'm going to die!" I was reassured by my medical team that this is not a death sentence. I'm not quite 2 years into this new diagnosis, but if you look at some of the members here, you will see that there are some long-timers in our group. I hope to be around for a long time yet.
Carol
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Hello! Waiting on a PET scan Friday to confirm but it looks like I'm joining the bone mets and Ibrance party. Wheeeeeeeee....
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PARAKEET, SORRY to meet under these circumstances. The waiting game is awful, but it sounds like you pretty much know already. Hopefully you get a good long ride on easy street and the Mets will respond well to meds a good long time. Ibrance was easy for me. Gals on the ibrance thread are very supportive. Good luck.
gailmary
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El_Tigre, welcome & sorry you find yourself here.
Radiation isn't only given for pain, it can be given for local control and to reduce the disease burden. I had radiation to my T11 which was totally asymptomatic . But it was an oligoprogression and we wanted to stay on my systemic treatment so we whack-a-moled it with rads (did the same a month before with a small progression in the lung). Depending on how many and location of mets, some oncologists now recommend an aggressive approach with SBRT or regular radiation... it's an evolving field without tons of RCT results yet but it looks promising.
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thank you Sunshine99 & moth
Yes I definitely went to the place "omg I'm going to die soon." I worried about my body being able to take the treatment as well. I also have Large Granular T cell Lymphoma which effects my blood numbers as well as anemia, But after my Oomp (ovaries & tubes) they ran my blood and my numbers looked good. My medical team didn't seem too worried about it which made me feel safe as well. Like Sunshine99's medical team mine also assured we have many options to explore to fight this and it's far from over.
I have an ONC apt this week and will be inquiring about the treatment they have me on to start as well as the radiation options or what their reasoning behind them is. When I as diagnosed in 2015 we were very aggressive with my treatment but since then my main ONC changed specialties and I have a fairly new ONC who is awesome handling blood and breast cancers but we are not sure how aggressive our plan is yet with her.
Tigre
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I've heard a lot about radiation for bone mets but when I asked my oncologist, she said it would only be done if there were fractures or a lot of pain. I'm still waiting on the PET scan (Friday) to get the full picture, but is this something I should think about getting a second opinion on? The chest CT scan I had showed a suspicious area on one vertebra, but we have no idea what might be lurking above or below yet.
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I'm always sad when I see new comers, but I'm glad you're here if that makes since.
The PRN at my Onc's office said stage IV isn't what it used to be and is a manageable disease, like diabetes. It's a chronic disease but no longer the automatic death sentence it once was.
That's not to make light of the whole thing, it's awful and it's hard, but it helped me to hear that so I thought I'd share
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ParakeetsRule, I think a lot depends on how many mets you have & where. The fewer the mets, the more aggressively I've seen oncologists go after the mets with local treatments such as radiation, ablation or surgery. It's not a replacement for systemic therapy but an adjunct.
From your sig line it looks like you're newly diagnosed? I'd get all the info, see what your oncologist recommends & then maybe consider a second opinion. SInce you're young, and if you have oligometastatis, I'd want to at least consider aggressive local treatments...
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Hi Parakeets. Just chiming in as I've had numerous treatments with radiation to deal with bone mets behaving badly. I wouldn't say I was in a "lot" of pain but the pain was impacting my quality of life. My MO is very quick to refer me to the RO if he thinks something is brewing that can possibly be helped by the radiation. I've also seen several on here that have had single bone mets zapped to reduce the burden of disease as Moth indicates. I know you are not oligometastatic as we've been chatting on the lung mets thread so there may be limited benefit for you from that approach.
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Parakeets, we made a mistake in 2015 by not getting a second opinion so I support getting at least one more opinion on the treatment plan. It maybe the same treatment plan but you will feel better with that confirmation. I hope your PET scan goes smoothly on Friday.
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Is anyone still doing Zometa on a monthly schedule? My oncologist told me that insurance companies changed to every 3 months now. I do find it helps with the bone pain so wonder if it is possible to still do it every month or at least every 2 months?
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I'm about to start Zometa next week. They told me it would be once a month for a year, and then every three months after that. But I'm being treated through the VA so insurance companies have no say over it.
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I didn’t think insurance was the reason for some oncs starting to recommend less-than-monthly doses of bone strengthening drugs . I thought it was being done to try to avoid s the complications of long term use of these drugs. (ONJ, femur fractures, etc)
There’s some evidence that quarterly seems as good as monthly doses here’s an article from BCO -
https://www.breastcancer.org/research-news/zometa-every-3-months-as-good-as-monthly
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Why do xgeva and zometa increase the likelihood of femur fractures? It's seems like such a counterintuitive side effect. Even my mo seemed surprised.
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the way I understand it is that the drugs make the bones so hard they become “brittle" in a way. That's probably very over-simplified, but that's basically what happens.
here’s an article, the site might require a free sign up to get rid of the nag screenhttps://www.medpagetoday.com/endocrinology/osteoporosis/67023
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Same here I start Zometa on 12/28 every 3 months. Back in 2016 I was on it every 6 months for preventative (stage 3 back then). I only was cautioned about dental work that would involve the jaw bone.
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I'm still getting Zometa monthly. I think I've been getting it for about 18 months now, but I don't remember. I have my next infusion on Wednesday and will see my MO. I haven't heard about any changes yet. I'm still waiting to talk about the PIK3 CA mutation test. If I start Piqray, I don't know if that will change my other meds (Ibrance, Arimidex).
I've actually been having more hip pain. Scans are scheduled for 12/15 so we shall see. I'm still getting scans every three months.
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Bone strengtheners coat the bone and eliminate osteoblastic and osteoclastic activity that make it impossible for the bone to either retreat or grow new bone tissue. They stabilize the bone. I wrote more on the Ibrance thread about my recent tooth drama. There is a blood test your dentist or oral surgeon can order to see if the bones holding your teeth are likely to heal after a tooth extraction. Definitely worth asking about.
If bones are already fragile these drugs won’t improve them, but they do prevent the bones from getting any worse. They do stay in you system a long long time and that’s why we are encouraged to get invasive dental work done before we start taking them.
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Just making sure you know that in addition to our Monday meetups, we now have a 2nd Virtual Meetup TODAY (and now every Wednesday) at 4pm, ET for people with MBC
To register, go HERE.
After registering, you will receive a confirmation email containing information about joining the meeting.
Hope to see you there.
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Hi
I have a question, I had a bone scan and it showed uptake in my left upper arm. I had no pain at the time of the scan and now I do only days later. I first thought it was me, like mental, and then thought it was my lymphedema acting up (I have mild pain in that arm due to no nodes left), but it is getting worse and it hurts at a certain spot to the touch.
I am going in for an xray next tuesday and I assume it's the bone mets but does it really show itself in that way? pain to the touch in a certain spot. Might be a silly question but I am still learning.
thank you & have a great Sunday!
Tigre
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El Tigre, it seems to vary so much for people. Some people's mets hurt, other people's don't. Sometimes the pain is from a fracture - when a met invades the bone it makes it weak so even a small movement can cause a break. I hope your xray gives you some more information!
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Thank you moth!
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I had a bone scan, CT, and a biopsy before I was diagnosed with bone Mets. I think they are very careful before they diagnose Mets.
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Sunnidays, did they all match? I'm still not sure I have bone mets yet because my CT scan showed something, but the PET scan report said they didn't find anything. Is a bone scan the usual next step?
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ParakeetsRule, they did not match exactly, the CT scan showed more bone Mets than the bone scan, I meant to ask the oncologist why that was but forgot there was a lot going on at the time.
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Isn't it maddening that all these expensive tests and they can't all work at the same level?
I was always told that the Pet scan was the best and frankly I'm surprised that once the first met is fou d that it is not automatic to check for more with the best test for the job. But our bodies have different kinds of tissue ( bones vs. Organs) and cancer can be elusive. Then there's the insurance factor and doctors knowledge and experience that varies. Grrrrr.
Just venting for you here.
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PET exposes pts to tons more radiation than the other methods so it's another factor why some drs avoid it.
There's an ASCO review of this topic which covers the pros & cons of diff methods but it says there's a difficulty
" Imaging bone metastases is problematic because the lesions can be osteolytic, osteoblastic, or mixed, and imaging modalities are based on either direct anatomic visualization of the bone or tumor or indirect measurements of bone or tumor metabolism."
doi: 10.1200/JCO.2004.08.181 full text is on sci-hub
https://ascopubs.org/doi/full/10.1200/JCO.2004.08....
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Thanks everyone! My oncologist was planning to follow up on the PET scan to get more clarity, but it wouldn't change my current treatment plan either way. None of my bones are currently bothering me so that's good....in contrast to right after the CT scan that showed the T5 anomaly, when I was paranoid and convinced that EVERY bone was hurting.
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