Where did all these mets come from???

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rosiesgirl
rosiesgirl Member Posts: 89
edited September 2018 in Stage IV/Metastatic Breast Cancer ONLY

Hello all,

I was diagnosed with bone and brain mets a year ago. Radiation, SRS as well as Tykerb, Herceptin, Zometa and Fasoldex brought complete resolution of mets at next scan. My next follow up scan was good as well. July of this year my regular 3 month brain MRI showed a new lesion and SRS was again scheduled. When they did the simulation, it was found that there was 4 lesions that needed treatment. I had my follow up bone scan and chest and abdominal CT 2 weeks ago. Bone scan showed new skeletal mets in almost every area! Total of 15 lesions in skull, arms legs, pelvis and spine. Abdominal CT showed at least 10 lesions in my liver. Chest CT shows 2 lesions in my lungs. What the heck! How did this all happen so fast!

I see my MO on Thursday. We spoke on the phone about starting chemo again. I will know at the appointment what treatment I will have. I have an infusion appointment on Thursday as my regular appointment. They extended the time to allow for the starting of new meds.

I am really stunned at the change in my scans over the last few months. This is the first time that I have really thought that this thing wants to kill me! Has anyone had a similar progression that seemed to come on so fast? What was your experience?

Joy

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  • vampeyes
    vampeyes Member Posts: 1,227
    edited September 2018

    Hello Rosiesgirl, I don't have any answers for you, I am sure someone will be along soon. I just wanted to say I am so very sorry you are going through this and send you virtual hugs.

    xxx

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited September 2018

    Sending support. I know this must be overwhelming. It does seem unbelievable that these mets spread throughout our bodies

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  • illimae
    illimae Member Posts: 5,710
    edited September 2018

    This all happened while on HR and HER2 targeted therapies?

    I don’t know what to say really, it sounds surprisingly fast to me too. I’m sorry you’re going through this and I wish you the very best in your next treatment.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited September 2018

    Wow! Did it really happen that fast or is a new doctor reading your scans? I would be gobsmacked.

    I can't offer you any advice except to hang in. I had 19 lung lesions when I was diagnosed Stage IV years ago and now we're down to only a couple of areas that are inactive.

    I wish you the best. Please keep us posted!

    Tina

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  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited September 2018

    Hi Tina,

    Scans have all been done at the University of Michigan Cancer Center, where I have my treatment. I have all the reports in my portal and these mets are all new since my last bone scan and CTs that were done in the spring. I just don't know how they all showed up so fast!

    Joy

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  • LoriCA
    LoriCA Member Posts: 923
    edited September 2018

    Rosiegirl so sorry to hear what you're going through. I see that you have HER2+ Inflammatory Breast Cancer, same as me and I'm sure you know how aggressive IBC can be. Although I was Stage IV de novo it was scary how fast mine spread through my body, into my left breast, then brachial nerves and chest wall and skin, right before our eyes while I was in the hospital for a week, and I had noticeable difference in scans of my skeleton just two weeks apart. Only my liver mets were unchanged during those two weeks. My tumor had very high ki67, which is a measure of how aggressive it is. Seeing the cancer growing right before my eyes was horrifying. My doctor didn't think I would last 60 days.

    Just wanted you to know that you're not alone with super-fast progression and I think the commonality is the HER2+ IBC. Chemo did a good job of knocking mine back and I've been stable on H&P, but in the back of my mind I figure that when I stop responding to H&P we'll have to move fast to find something else that works and it honestly scares me. Hope you have good results with your new treatment.

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  • rosiesgirl
    rosiesgirl Member Posts: 89
    edited September 2018

    Hi Lori,

    My original ibc had a ki67 of 96, very high. I was fortunate to be Ned following my ibc treatment in 2015. IBC is an aggressive beast. I hope that I will have a good response from chemo for the mets like I did for the ibc. Not looking forward to starting chemo again, but I told my MO that I am willing to do whatever is determined to be best to try and get this under control. I knew that I would be dealing with treating new Mets as they came up. I just never dreamed that this would start spreading so fast. Thanks, everyone for the kind words.

    Joy

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  • Daniel86
    Daniel86 Member Posts: 271
    edited September 2018

    I am very sorry about what's happening to you. Your will to fight shows how strong you are and it is really inspiring. We are all rooting for you!

    Btw, it's frustrating how little money and effort clinical trials dedicate to IBC. I know it's not a common kind but neither are some genetic mutations that have received plenty of attention. It is after all a very aggressive type.

    Daniel

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  • Daniel86
    Daniel86 Member Posts: 271
    edited September 2018

    I am very sorry about what's happening to you. Your will to fight shows how strong you are and it is really inspiring. We are all rooting for you!

    Btw, it's frustrating how little money and effort clinical trials dedicate to IBC. I know it's not a common kind but neither are some genetic mutations that have received plenty of attention. It is after all a very aggressive type.

    Daniel

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