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Intramedullary metastatic disease?

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superdenovo37
superdenovo37 Member Posts: 33

Hi, I need some support. I was just diagnosed in October and I thought I had all the mets - brain/bones/liver/lungs. Then I was diagnosed with leptomeningeal disease one month ago. (Did whole brain radiation and am now on Xeloda/Tuksya for that.) And now, I just got MRI results that say this:

"New 3 mm nodule of enhancement within the right aspect of the cervical spinal cord at the C7 level suggestive of intramedullary metastatic disease."

I googled intramedullary disease and see that it is even rarer than leptomeningeal disease and also carries a poor prognosis. Of course now it's the weekend so I can't ask my doctor. I have an appointment with my MO on Tuesday.

I really wish I didn't read the results. My youngest daughter's 3rd birthday is tomorrow, I have been in such good spirts and so excited to celebrate with her. I'm going to do my best to enjoy the moment and not let this ruin her birthday weekend for me.

This sucks. Does anybody have anything hopeful for me? Anyone experienced something similar? Thanks.

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  • moth
    moth Member Posts: 3,293
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    Hi SuperDeNovo, wow, I don't know anything about this but I'm here to echo you - this sucks, sucks, sucks. I hope you can try to put it out of your mind for the weekend & that you can get a plan together on Tuesday for how to treat this stupid development. hugs from afar

  • superdenovo37
    superdenovo37 Member Posts: 33
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    Thank you moth, hugs received.

  • elderberry
    elderberry Member Posts: 1,067
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    SuperDeNova: I cannot find the right words : "awful" "sucks" "depressing" "scary" ---- all sound pretty hollow. I hope you can push it a bit to the back of your mind and enjoy the pleasures of your 3 year old's birthday. I am always saying to people "For God's sake don't go to Google" , then I promptly do just that. Cyber hugs!

  • superdenovo37
    superdenovo37 Member Posts: 33
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    Thank you for your reply, Elderberry. I was able to enjoy her 3rd birthday. It was nice to be in a house with family, without our masks on. Yay for vaccines.

    After talking to my MO yesterday, I still don't really know what "intramedullary metastatic disease" is. I checked Bestbird's Insider's Guide and I couldn't find it there either.

    I messaged my RO and will update this thread when I learn more, in case it helps others in the future.

  • superdenovo37
    superdenovo37 Member Posts: 33
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    Hi, no need for replies. I just wanted to update this thread in case someone gets this diagnosis and searches the boards.

    My understanding of "intramedullary metastatic disease" is that it's basically progression in the spinal cord. I tried radiation for the first time this happened, and it helped. When it happened a second time in a different place in my spine, radiation did NOT work. My MO switched me to Enhertu and that is currently what is working for me.

    I hope that helps someone!