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Any long-haulers living with bone mets?

Long story short: managed to get rid of my brain met. No mets in the rest of my organs. Scans showed bone mets shrinking. I read people with stage 4 BC with mets lived longer than those with mets on the organs, but could not find a difference in the asinine 5-year survival rate. Can anyone with bone mets here can confirm this? Is it even possible?

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,642

    I have heard this too but don't have a solid source to point you toward. I have a single bone that was radiated over eleven years ago. No progression and I have only been on AI's (and an older bone strengthener for the first three years after dx). I am not typical so I'm not sure if my experience means much . Take care

  • sunnidays
    sunnidays Member Posts: 152

    It's a bit like reading the media and seeing..something may potentially be this or that, bone mets are generally a better presentation that does not mean they always are that's how it was explained to me.

  • mermaid007
    mermaid007 Member Posts: 40

    Hello,

    I’m over 8 years with bone mets. Liver mets joined the party 4 years ago. I’m ER positive

    Xx

  • olma61
    olma61 Member Posts: 1,016

    This is a chart from a paper on pub med. The blue line represents patients with bone mets. So in that study, the results did show that bone mets pts were among the longest survivors. We are all individuals though, it is important to remember that too.

    I am five years and 7 months from diagnosis.

    image

  • finallyoverit
    finallyoverit Member Posts: 133

    I will hit the 6 year mark in May with a single bone met. My MO has told me that there isn’t any reason to believe that this trend won’t continue. I’m er/pr positive, her2 negative and have been on Ibrance/Femara since May 2017. All things considered, I’m doing great.



  • threetree
    threetree Member Posts: 1,157

    Wow, you sound like you are taking the same path Exbrnxgrl did - She's at about 11 years now with just the one met. Keep it up and good luck!

  • tarheelmichelle
    tarheelmichelle Member Posts: 248

    I have had extensive bone mets for 11 years with MBC. First couple of years was mainly ribs and spine, and then it spread to bones I didn’t know I had, like the acetabulum. I even have cancer in a pubic bone. I’ve had my spine radiated twice, and had palliative hip radiation in October. Generally speaking, cancer in vital organs is more likely to lead to death than cancer in bones. Truthfully, many cancer deaths are due to treatment side effects, not cancer.

  • goldie0827
    goldie0827 Member Posts: 6,798

    Cancer diagnosis 2008, bone mets "joined the party", (as Mermaid said) in 2014. Hip, ribs, spine, jaw, skull and who knows where else! No radiation and no pain. No organ involvement either. I've been on Faslodex, Xeloda, Verzenio, Hercepting/Perjetta and currently doing Enhertu along with Faslodex and Xgeva.

  • threetree
    threetree Member Posts: 1,157

    tarheelmichelle and goldie - Congratulations to both of you, and I only hope and can be so lucky.

    tarheelmichelle - I found your comment about many deaths being from treatment, not cancer very interesting. I have often wondered about that fact. I wish there were some available statistics. I don't even know if they keep track.

  • vlnrph
    vlnrph Member Posts: 474

    A little wary of posting during the start of this website's overhaul, I'm doing it because I feel compelled to comment on the idea that many cancer deaths are from side effects. Recent data would be good to see.

    From 2008: “A British inquiry into the use of chemotherapy to treat seriously ill cancer patients has found the treatment caused or hastened death in 27% of cases" but they only looked at 600 people who expired.

    Also, “the [report] concluded that 19% of those who died should not have been receiving the treatment at all". Instead of 'last ditch' efforts during the final 30 days of life, perhaps hospice might have been a better choice?

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,642

    threetree, yes, my path has been unusual. I have probably had less treatments than most as I have never had chemo, IV or oral. I did have rads to my bone met. Yes, I have a port, whose installation resulted in a complete pneumothorax, but never ended up with chemo. Go figure 🤷🏻.

    Some have suggested that I am cured but I beg to differ, since there is no evidence to support that my course of tx would have the same outcome in others. If it did, I might be more inclined to consider it a cure. As it stands, I am just a lucky outlier.

    tarheelmichelle, do you have any stats/research to support your assertion that many cancer deaths are due to tx side effects? Many is a very vague term and I am curious about this!

    * Just read vinrph’s post. That data, though a small sample, helped. Personally, barring other evidence, I would hesitate to use the word many.

  • threetree
    threetree Member Posts: 1,157

    Exbrnxgrl - I'm with you about the "cured" thing. I'm amazed at the people out there who seem to think that just because you are stable you've been "cured". The same for tumors that have more than likely (only) temporarily shrunk, "remission", pcr's, and even just being done with active treatment. I think people who don't have and know a lot about cancer like to put a positive spin on it and give us hope, which is very nice, but the reality is something much different.

  • threetree
    threetree Member Posts: 1,157

    I have a question for those of you with spine and rib mets re pain. I'm in really bad pain as I type this, so I might ramble, misspell, etc, but here goes: I was told that I have a couple of spots on my spine (T2 and T8) and then lytic lesions in my ribs with multiple rib fractures. I was told that in January and at that time and no particular pain that I could relate to the mets. I saw the oncologist on March 1 and she asked if I was having any pain and I said, no. She said, "Your real lucky". She also said that some have pain and some don't.

    The Sunday before yesterday, I went to get a package out of parcel lockers that we have here at my apartment place. The delivery people put the packages in the lockers and then you are sent a code electronically to use to open the locker and retrieve the package. I discovered that my package had been placed in the far back space of the highest locker and it was too much for me to reach. If I closed the locker to get help, I risked the code saying that the package had already been picked up/deactivated, so I went ahead and tried with all my might to reach up and try to move the package forward so I could grab it at the front of the locker, where I could reach. I probably spen 15-20 minutes just constantly reaching up to that high space to try and get the box to move. I even swung at it with my purse a few times thinking that the weight of that might cause the package to budge, but it didn't. Finally, I saw that others had left flattened cardboard in the trash in that room so I grabbed a piece and fashioned some sort of "stick" type took out of one of the flattened boxes. I tried using that too several times to get the package to dislodge from far back of the top locker. I tried and tried and tried and tried and finally at one point, the cardboard "stick" moved the box forward enough that I could grab onto it. In hindsight I realize that was real stupid of me, but that's what I did. At the time I felt no pain or thought of any reason why I should keep trying to get that box out.

    Fast forward to last Wednesday, and I woke up with horrible pain around my right rib cage area and somewhat into my back. I could barley move or get out of bed. Started thinking it was a pulled muscle from some previous days work I did that involved a lot twisting around back and forth on a table doing paperwork, computer work, phone work, etc. Thought I would just wait it out and take some Tylenol. The Tyleonol helped a tiny bit, and so I thought I'd go out for my walk, that is usually about 45 minutes. Well in no time I realized that every step I took caused this pain to flare up. It got me so nervous and anxious that I had to come home after about only 15minutes. To boot I was exhausted and out of breath, and at times found myself developing a raspy voice (usually when I would experience the pain flares.). I'm a real Dr. Googler, whether I should be or not, and everything I read and had experienced fit with perfectly with severely strained intercostal muscles. I did suspect the rib and spine mets too, but from everything I read it was far more likely to be severe intercostal muscles strain. I decided to go to urgent care that afternoon and they determined that it was "musculoskeletal" and told me to just go home, take it easy, us OTC pain reliever, heating pad, etc. The next day I though I had some improvement, but it didn't last long. By Saturday and Sunday I was in excrutiating pain and had the pain had shifted somewhat to the left side as well as the right. The right seemed slightly better. The pain was so bad I was crying and I switched from Tylenol to 2 Advil 3 times day - something I would normally never, ever do. Again, everything I read said intercostal muscle strain. It said it could be severe and debilitating pain that takes a few days to develop and then which can get worse before it gets better. That encouraged me to go with the sore muscle and not mets idea again. Yesterday morning, it was even worse, so a friend offered to drive me to the ER or the urgent care, and I went back to the urgent care. This time they gave me a stronger NSAID and a muscle relaxer, that I have barely started, so can't comment on, and I am waiting for it to kick in as I write this.

    I noticed that both times the practitioners I saw called this either "musculoskeletal" or "back pain, unspecified". They never indicated that it was muscle only and likely not mets. The person I saw yesterday even made mention in her notes that while it appears to be muscle at this time, she cannot say that it isn't from one of the spots on my spine.

    My question to those of you with spinal and rib mets, rib fractures, etc. is: Do you have pain? If so how much, how often, and what is it like? What do you take or do for it? Is this something that could become chronic and for "the rest of my life", i.e. could I have to live with this severe debilitating pain for whatever time I have left? I am hoping with all my heart of course, that this is just badly pulled muscles from that Sunday package retrieval incident, but I am getting more and more scared that it could be mets. If it's muscles, they say they can take weeks and even months to heal, so I have lots of time to wait and worry about just what this might be.

    Thanks more than you'll ever know to any and all of you who have taken the time to read through all of this. I'm just a very painful mess this morning and looking for answers. Thank you all so much!

  • threetree
    threetree Member Posts: 1,157

    I meant to post this in the bone mets thread. I will try to cross post - sorry, I'm rattled this morning.

  • threetree
    threetree Member Posts: 1,157

    Lotusnoir - Thanks so much for taking the time to post. Yes, I did upgrade from Tylenol, Advil, and the heating pad to this new meloxicam (NSAID) and the muscle relaxer. So far today the meloxicam doesn't seem to be much better than taking 2 Advil 3 times a day. Not sure which is safer to do. Only the first day with these two new drugs, so will give it some time. I totally agree with you about getting 2nd opinions.

  • illimae
    illimae Member Posts: 5,517

    Lotus, I still have a few shrinking brain mets but only 1 bone met at diagnosis. It’s been over 6 years now with no new mets anywhere below my neck. I do recall reading that bone only is favorable. I’m no longer in that category with brain mets but I believe minimal disease burden and stability are key to me living well and longer than the original expectations.