For those with Spinal Mets or Other bone Mets

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Faith123
Faith123 Member Posts: 41
edited June 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi,

I'm sorry if I'm asking questions that have already been answered but I'm still finding my way around this site.

I've recently diagnosed with Mets to the spine on T11/12 which was kind of a blow to the stomach considering 2 years ago I was diagnosed with “pure DCIS" at the age of 27.

I wanted to find out do Mets to the bone respond to chemo treatment ?(AC-T) I'll also be going on Herceptin and another bone injection.

Has anyone gotten to NED with bone Mets?

Has anyone had the lesion go into the spinal cord?can it even get that far?if it does,is chemo able to get to it considering the barriers?

At the moment,the pain isn't too bad and I'm functioning normally but I do have muscle twitches that occur randomly and sometimes a bit of pressure on my spine,is this something to be concerned about?

I did have 15 sessions of radiation which I completed a week ago and I don't really feel that much of a difference

Biology make up is ER and PR positive and Her2 positive


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  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited June 2019

    Hi. I have attached this link to the bone mets thread.

    Try here with your questions, too!

    https://community.breastcancer.org/forum/8/topics/...


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    I had Mets to more than one vertebrae when I was diagnosed. I reached NED on Taxol, Herceptin and Perjeta, Was NED for one year. L1 became active again and I just finished radiation to that one. Don't know the answer to the spinal cord question but plenty of people live for years with bone only mets without having them spread


    I am also on Xgeva. Was put on quarterly injections after a year but going back to every six weeks for awhil


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  • S3K5
    S3K5 Member Posts: 606
    edited June 2019

    Hi Faith, sorry to hear about your bone mets. I have had bone mets since 6 years and they are reasonably stable. Radiation to the bone was the first mode of treatment, which helped me in reducing the pain.

    I see a neurosurgeon who monitors my MRI scans to ensure the bone mets are not near the spinal cord. But then, the location of my bone mets started in cervical area and now to lumbar area. I also get Xgeva shots every month to keep the bones stronger.

    Your MO will probably monitor you with MRI every 4-6 months while you are on Herceptin. Understandably, you are very upset (I was too) but as you can see on the'Bone Mets' thread, plenty of women are stable with bone mets for many years. Your MO seems to be taking aggressive steps to ensure you are NED. You are in good hands.

    Please feel free to send me a private message if you have any questions.

    All the best.

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  • Faith123
    Faith123 Member Posts: 41
    edited June 2019

    Thank you so much for your responses,it means so much to me 🙏🙏🙏🙏

    And I’m on the “Bone Mets “ thread so I’ll be camping there for a while;it’s good to know that Mets are treatable and for a long time.

    Things have been extremely difficult for me;who deals with such a diagnosis at 29,like I just don’t get it and my babies are under 3 ,like I’m just not okay.

    But it could be worse and I’m just grateful that my Onx are treating me aggressively.

    Thanks again guys

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  • pajim
    pajim Member Posts: 2,785
    edited June 2019

    Faith, it sounds like your diagnosis was not so very long ago. You're in what I think of as the 'shock and awe' period. The time when you're convinced nothing will work, that you're going to die tomorrow, accompanied by a lot of fear and crying.

    All of that is totally normal. Totally. And I'm so so sorry that you are dealing with this at such a young age. But you aren't going to die tomorrow, next week or next year. You'll get used to this whole ugly thing. In the meantime, welcome to the club! Only the best ladies get to join.

    I'm not HER2+ but was diagnosed with spinal mets when my back broke. I can laugh now but at the time it was serious business involving a day-long operation and six months of rehab. Hormonal treatment and radiation put me at NED for 2 years.

    Bone mets tend to spread in the bone first. In other words, they won't spread from the bone to the spinal cord just because the spinal cord is right there. You're more likely to [eventually -- not immediately] get lesions in other parts of bone.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2019

    Hi Faith,

    I just wanted to reach out and say that I am where you are emotionally right now. I was diagnosed stage 4 a few weeks ago. Everything is fresh and raw and my treatment plan isn't yet in place. My MO will be treating me aggressively too. I have mets to spine and several other places in the bone only. Getting a bone biopsy done on tuesday to see if my cancer has changed and to genomically test to see what will work most effectively. My MO told me that we are going for the least toxic most effective treatments since treatment now is long term. I'm so sorry you have to be here- I wish we all didn't have to be here- but as my MO told me, this isn't an ending, we have much in the arsenal to try. Hang in there :)

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  • JFL
    JFL Member Posts: 1,947
    edited June 2019

    Faith, bone mets can go inactive for long periods of time. When I was diagnosed, my body was riddled with bone mets everywhere and I was suffering from uncontrollable hypercalcemia. My cancer was throwing off calcium from my bones into my blood at dangerous levels. The bone mets situation was dire. However, within 3 months of treatment, all bone mets went inactive and stayed that way for over 4 years. I had a lot of damage and it did take 6 months - 1 year for all of the damage to heal. I was NEAD for over 4 years. With bone mets, healed bone mets often showed as "sclerotic" lesions on scans. They are healed, just look different than unaffected bone tissue. Not everyone may technically achieve NED (no evidence of disease) for this reason but it is very common to achieve NEAD (no evidence of active disease). I was off effective treatment for a good chunk of time due to a recent clinical trial and in that time, one bone met did light up on the PET scan during my last scan. However, it seems to have resolved itself now that I am back on an effective treatment.

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