Bone Mets Thread
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@going2beatthis Thanks! That might be a game changer.
@dysonsphere Generally speaking, bone mets are treated with oral medications at first, before progression of the disease.
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dysonshere,
Based on my experience, bone mets are treated with same systemic treatment (could be oral) as other mets, but sometimes radiation is considered, either targeted or whole area (like the pelvis). I've had a consultation with an oncology radiologist, but radiation was not recommended based on risk/benefit. I was told if my bone pain got worse then radiation would be reconsidered. A bone strengthening medication (bisphosphonate) like Zometa (infusion) is also often started. There are risks associated with long term bisphosphonate use but my oncologist says it helps control bone pain d/t mets. I've been on Zometa since the start of my MBC diagnosis (5 years) and now get it every 6 months. Dose is based on weight and kidney function so a recent creatinine level is always needed. First dose is known to cause flu-like malaise, but subsequent doses are usually well tolerated.
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I rarely comment on this thread as I only have a solitary bone met (for 13 years!). My tx has been different than most. I had rads to the bone met (upper femur), which rendered it necrotic and then only AI’s for 12 years. I went off all meds a year ago due to cumulative side effects. I know I’m an outlier but there can be different approaches to treating bone mets though I acknowledge that my path has not been the common one.
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@tougholdcrow, I only just caught up with your most excellent news - such a smile on my face for you and a good feelings glow do I have. You have made my day.⭐️
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@lgp1111 At this juncture where you have progression the new thing to do seems to be a blood biopsy to see what mutations you may have developed and which drugs would be more likely to work than others. Im still bone only but gained a receptor to become HER2+, however this was picked up by bone biopsy after continued growth and pain. Next drugs will likely be pill based yet - I was put on lynparza due to my BRCA1, but some may stay on a CDK4/6 and go to Verzenio or Piqray if they have that mutation. Capecitabine is another that is typically next in line. Its definitely a juncture point for discussions with your oncologist.
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@exbrnxgrl glad to hear you are still doing well having gone off all meds a year ago. Is the plan to have scans at least? Or tumor markers annually? Are you done with the oncologist?
Like you my only met was in my humerus.2017. 6.9 cm. Grade 1. Scans show it's dead. Now I'm treating for a new TNBC. MO says chemo is pushing further back into remission but I must restart faslodex again soon. I think its overkill. I dream of being drug free but I guess I'm too scared of cancer. Wouldn't it be nice if there were some reporting system to see statistically how everyone with cancer has done under different circumstances?. And so many have not progressed. But do they study them?
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Yes, still hanging in there! Should be getting scans in the next few months. Thanks for asking. I just keep going back to why… why have I done so well? I do have a tremendous amount of survivors guilt, especially when I get pm’s asking about my lifestyle or what I’m “doing” to keep my cancer at bay. I do nothing special and I truly wish I had a better answer.
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exbrnxgrl
Your long term stability is probably explained by your tumor being grade 1. You probably know the following, but others may not. AI says the following:
Grade 1 cancer is a low-grade cancer, meaning that the cancer cells look similar to normal cells and grow slowly. Appearance: Grade 1 cancer cells are well-differentiated, meaning they look similar to healthy cells and tissue. Growth: Grade 1 cancer cells grow more slowly than higher grade cancers. Spread: Grade 1 cancer is less likely to spread than higher grade cancers.
When I was first diagnosed the grade of my tumor (grade 3) was discussed along with the implications (not good).
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Hi @weninwi, I would have to disagree with AI - I have extensive bone mets and I have a grade 1 cancer. The mets are in every major bone I have. However there is no lymph node involvement - so mine spread through my blood.
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All very interesting . We don't hear often from those with Grade 1. From those that fill out there signature or profile anyways. Always left wondering.
@malleemis251 how long did it take to progress to all your bones?
My 1 met showed up 8 years after initial dx. Then xgeva for 3 years till jaw pain. MO wants me back on it. Hmmmm?
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Yes, I am definitely aware that the grade has likely played a role in my longevity but the puzzling question is how I went from a clear mammo to a year later metastatic with that grade 1 tumor. That discovery was an incidental finding on an unrelated PET a mere six weeks after my bmx , yet the met was 2cm. While grade provides some explanation it appears to be far from the whole picture.
Although all of us experience mbc differently, my trip has been weird for lack of a better term. Never had chemo, but had a complete pneumothorax as a result of port instillation (walked around for two weeks before emergency hospitalization). Still have the port but am currently on no tx at all . There has to be something else to explain this and I truly wish we knew.1 -
My original tumor was grade 1 and went to grade 4 at the 10 year mark with a bone met causing pleural effusion
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exbrnxgrl,
Regarding your port….pneumothorax after placement - yikes. I just had a port placed and don't remember being informed that was a possible risk. Also, since you've never had chemo, what is your port used for - scans with contrast, blood draws? Do you get it flushed regularly? On what schedule? I'm still adjusting to having a port. Not sure yet it was a good decision, but my veins were starting to object.
Wren44 - interesting that you went from grade 1 to grade 4. Was it a new mutation?
malleemis251 - AI is not as smart as it thinks it is😏.
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I am so sorry to hear that your cancer recurred, and At the same time, I am happy with the results you have achieved.
My first diagnosis was in 2020, and I have recurrence in june this year, the mets was in my bones,
As for your decision not to neglect anything regarding the symptoms, I totally agree.
I emphasize that my own insistence after high marker results helped prevent the cancer from spreading further.0 -
what is the bone scan ? I hear this so frequent in the forum,
is it the same as dexa test?And Is it better than pet- ct scan in diagnosing bone mets progression?
Or in detecting new lessons ?0 -
Yes! I believe the possibility of a lung puncture during port placement is still included on the consent form one signs. It is extremely low incident, happening about 1% of the time. It is almost always caught immediately as a post placement x-ray is done to ensure this hasn’t happened. My case was truly unusual in that doctors surmise that my lung was nicked, so it appeared fine on the x-ray, but deflated slowly over the course of two weeks! Surprisingly, I had no pain nor breathing issues. I did have a weird cough that sounded like Rice Krispies were snap, crackle, and popping in my throat 🤷🏻♀️. When it appeared on that unrelated PET scan , I was rushed to the hospital for the most brutal bedside procedure in the ER, the insertion of a chest tube. The PET also revealed the spot on my femur which turned out to be a bone met. All of this happened barely 6weeks after my bmx. It was a wild and totally unexpected outcome. As to the port, piercing the lung is a known complication but it is so very rare, and easily dealt with when discovered on the post installation x-ray that most folks never think of it. Of course, I never seem to experience the typical so I walked around for two weeks with a slowly collapsing lung 🫁. If you search this site, there have been a few others with collapsed lungs after port installation but I would guess less than 5 !
*I did use the port for about three years to infuse an older bone strengthening drug (Pamidronate/Aredia) and for blood draws.1 -
I had a small grade 1 tumor in my breast with spread to local lymph nodes and bones. I was MBC de novo. I had mammograms every year. I still am not entirely sure how many lesions I have in my bones (the last CT scan suggested 3, though my onc says I am not oligometastatic), and I also have no idea how I could have had this spread with a grade 1 tumor in just a year. But there it is.
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@gailmary, apologies for my lack of profile - I have tried 3 times to complete and display it. I am ashamed to say that after the third time I gave up. I am truly challenged when it comes to all things IT. In August 2023 I was given a de novo stage iv grade one dx with mets to bone only. I have only sclerotic mets, no lytic. My onc was surprised at the extensive spread and the size of some of the mets - one in particular in the pelvis area. I had no bone pain - still don't. I only get "pings" which last for only a few seconds and there is debate on the medical team about what that might be. They have no idea how long I may have had cancer lurking.
@norah2024, bone scans are very good at showing "hot spots" cancer activity in the bones. The degree of contrast take-up by the bones can help to see how treatment is working and where there is bone activity. My onc uses CT scans to check that there is no organ involvement, or any efflusions or gas in the abdomen and to measure the size of the mets she is worried about.
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A bone scan is not the same as a dexa test. It’s more thorough and covers the whole body. Dexa just measures a couple of spots.
wenwii, no change in type. ER+PR+.1 -
Although a grade 1 breast tumor does lessen the possibility of metastasis, it doesn’t eliminate it and it doesn’t solve the mystery of someone like me. What I find unusual is that my bone met, a biopsy proven twin to my breast tumor, was already 2 cm when discovered (a year after a clear mammo) . It was treated with rads ( I had no pain. The idea was to kill the bugger) and have had no progression for over a decade. I really wish there was some explanation for how well I’ve done. I have a lot of survivors guilt.
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@exbrnxgrl No need for survivor's guilt! This is pretty much out of our control, so we don't really bear any responsibility for what happened. It's not like we consciously wished ourselves breast cancer or have some kind of magical powers over cancer cells, other than going along with whatever treatment is available. We can't really feel pride as if it's some kind of achievement to beat it back. It is what it is, the mysterious ways of nature that even the best science doesn't completely know.
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Oh, I have guilt over almost everything! Been that way since I was a child. Though I understand the course of this disease is largely out of our control, I doubt I will ever stop feeling bad that I have survived when so many others haven’t, especially when so many have actively worked to stave off progression and I haven’t. I also have gotten about five pm’s over the years asking me exactly what I’m doing/taking/practicing or what my “lifestyle “ consists of that has yielded such progression free longevity. A few were quite insistent about the fact that I must be doing something! Seriously, I have no secrets, regimens, nor protocols but I do have lots of guilt🤷🏻♀️
On another thread someone mentioned that the thing I’m doing is regular cannabis use. While I do use it almost daily, I do it for appetite stimulation (I am very thin) and pain relief. As to it’s cancer fighting properties? Lots of anecdotes, little evidence so I would not chalk my longevity up to that.
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malleemis251
Re completing a profile . I think the easiest way is to click "Signature settings" in the column to the right under "Quick Links". Then you'll see a dialogue box with the paragraph symbol ¶ to the left. Just start typing in the dialogue box. Format your notes, however you want. You may want to first type your notes in WORD and copy and paste into the dialogue box. Then click "Save". I think you need to close out the BCO site and reopen it to see your new signature profile under you comments.
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@weninwi, so many thanks for the help with signature block - I have tried to do it correctly. As authors say in their thanks to others - any mistakes or errors are down to me - not to those who have helped.
@exbrnxgrl, guilt can be a habit many of us have. I think it is instilled in us since birth. I envy you the ability to benefit from marijuana. It never did a thing for me when I was far younger - I guess the abject failure of it for me stopped me from trying other stuff. But good fortune to those it helps.😎
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@divinemrsm thinking of you ❤️
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SFcakes - Thank you so much for mentioning Divine. I was actually going to make a post asking if anyone knew anything about how she's doing these days. Yes, Divine, thinking of you for sure.
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@exbrnxgrl Dear Girl, try not to waste your emotions on survivor’s guilt, because you have survived cancer for all those years without progression. I was like you surviving stage IIIA thinking I was NED. For 13years. I just thought I had beaten the breast cancer and then suddenly a phone call from my onc that my CA/29.27 had risen high after so many years. Traveling Breast cancer cells in my Blood. Scans showed bone Mets through out my spine, ribs, lumbar, Sacral, Hips & Sternum I thought Wow‼️How insidious this disease is hiding out so long in my bones😮. It is what it is, we have no control and don’t feel guilty.
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TO Everyone Here today. You are all very much in my heart and on my mind. I am saying Breath Prayers for you all and wishing you peace and comfort and a painless day,& this evening. Gentle ((((hugs)))).
🩵
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Thank you for your kind words. At age 68, feeling guilty over just about everything is a habit that likely won’t be corrected. Really really difficult to see kind wonderful people try as hard as they can to survive while I do absolutely nothing . I am socially awkward, always have been, and this guilt thing seems to be part of it (yes, on the spectrum but it’s not obvious).
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So if a person is diagnosis, that is what it is.?
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