MBC into spine and leptomeningeal

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Snow-drop
Snow-drop Member Posts: 514
edited May 2020 in Stage IV/Metastatic Breast Cancer ONLY

please share your experience here.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2020

    Julia,

    You might get more responses if you were a bit more specific about what experiences you are looking for, i.e. experiences regarding symptoms, biopsies/tests, treatments etc. You might also consider making your signature/diagnosis line public so that folks who have similar situations can speak to that. All the best

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  • Snow-drop
    Snow-drop Member Posts: 514
    edited July 2020

    thanks for your input. I’m kinda new here! I hope my signature is seeable now.


    I diagnosed with stage IV into spine, it was first (October 2019) in 2 areas of spine, one fractured few days after getting zometa. It is now in whole thoracic with spread to spinal fluid (3 of them spread to the wall, which make me worry of another fracture) and some lumbar spine. I got radiation therapy for 10 sessions after bone broken, while I was suggested that the size of tumors will be decreased or even removed by the only exitreatment (radiation) still after 6 months nothing changed but new tumors appeared in different thoracic spine.

    I have some questions for whoever has this experience:

    1) what treatment do you get for bone metastatic

    2) did you get a bone biopsy in addition to breast biopsy

    I am only on letrozole and ibrance and get zometa every month.

    Thank you

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2020

    Julia,

    Your signature line looks great! My bone met situation is very different than yours. I have a single 2cm met to my upper femur. It was first seen on a PET scan and later confirmed by biopsy. I had no pain nor symptoms but had radiation to the met with intent to kill the little bugger. It seems to have worked so far. I have never had chemo and only take exemestane . I did have a couple of years on a bone strengthener as well. I have had no progression since initial treatment.

    As far as biopsies go, remember there are areas that can’t be biopsied because of their location. It’s not uncommon for a diagnosis to be made based on other evidence, particularly imaging.

    Hopefully someone with a diagnosis closer to yours will be along soon

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited April 2020

    Hi Julia,

    I’m not sure I completely understand your treatment to date. Did you initially only have radiation and no other treatment? That would be highly unusual, particularly for hormone positive cancer. If you have been on Femara and Ibrance since diagnosis that’s pretty much gold standard - tends to be the first choice, depending on the burden of disease.

    I have bone mets pretty much everywhere. Thoracic spine, lumbar spine, cervical spine, hips, ribs, clavicles, sternum... you get the picture. Fortunately my bones are strong and so far no breaks but my MO did have me on a bone strengthener until recently (issue with kidney function numbers that we were trying to figure out).

    For the most part, while there are chemos that are more effective for certain types of metastasis, typically they will cycle through options regardless of where it is. I was diagnosed due to pleural effusion in my right lung so initially my MO had me on Taxol to try to kick it back faster. It didn’t work so we switched to Arimidex/Ibrance. Unfortunately my body couldn’t tolerate the Ibrance (hemoglobin kept dropping) and then Arimidex failed. I’ve been on Faslodex for over two years, recently added Verzenio, and it’s holding things steady. I don’t know about my spinal fluid but do have mets in the base of my skull.
    There is a pretty active bone mets thread that you might want to join. The ladies are very supportive and can provide more info. Otherwise I’m happy to answer any questions if I can be of help.

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  • Snow-drop
    Snow-drop Member Posts: 514
    edited May 2020

    thanks ladies, I really appreciate your support. Reading your messages inspiring me. I check bone Mets thread, thanks for letting me know.

    I just spoke with a neuro oncologist (these days they only offer zoom or tele visit which is much better, no need to arrange a trip to hospital!) She wants to do lumbar puncture to see if cancer enter to spinal fluid is same as original cancer.

    My oncologist doesn't believe that a bone biopsy can be helpful for choosing the right treatment!

    Despite hormone therapy and targeted therapy and bone strengthener drugs, tumors are growing in my spine and now in spinal fluid (CSF). It brought a doubt if pathology results wasn't correct. Slow actions of medical team are also so annoying.

    I checked on the internet I couldn't find much treatment for CSF. I hope someone with similar experience see this.


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  • jensgotthis
    jensgotthis Member Posts: 937
    edited May 2020

    Hi Julia, The possibility of Mersin the CSF is a far greater worry than the bone Mets, which is why your MO may not be treating those now

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2020

    You can find more threads on this topic by searching the key word “leptomeningeal” and also a misspelled version “leptomengeal “. Then scroll down and select sort by Relevancy. Here is one to the threads:

    https://community.breastcancer.org/forum/8/topics/869288?page=1

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