New Dx of Additional Mets

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DawnLee
DawnLee Member Posts: 19
edited September 2020 in Stage IV/Metastatic Breast Cancer ONLY

Hello,

I haven't been in here for some time, but I desperately need some encouragement. Original Stage II dx pos/p0s/neg, right breast 2017. Double mastectomy, DIEP, chemo, then a year of Arimidex. 2019, dx with Stage 4, with bone Mets to spine, hip, femurs. Have since been on Xcheva/faslodex and Ibrance. Had a new PET scan yesterday and devastated to learn there is a new lesion on left adrenal gland, now have numerous lesions to liver, and new/new growth of bone Mets. Meeting my doc next week but sounds like they're putting me on IV Taxol and possibly Zaloda (sp?). I have been very hopeful with just the bone Mets but now I feel like I've truly received a death sentence. I'm wrecked. I could use some encouragement from those who are still hanging in there with liver/bone/adrenal Mets. Thank you.

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  • cyathea
    cyathea Member Posts: 338
    edited September 2020

    DawnLee, this is such hard news. We all wish you didn’t have this progression. Since I only have a little bone mets, I have not been where you are, so maybe I shouldn’t say anything, but I still want to encourage you. After you give yourself some time to adjust, you can likely do quite well with the new treatments/drugs.

    We are here to support you and listen to your pain. You don’t need to put on your brave face here. This is scary. We are sad for you and everyone else in this situation.

    When we live with bad news, some people may avoid talking to us because they can’t deal with life being unpleasant and, at times, horrible. But on these forums, we are living with this reality. We have good days when we can savor the small pleasures of life and bad days when we want to hide from everyone. I know you are probably having some bad days now. I hope you can slowly get to a place of having some better days soon ((Hugs)).

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

    Hi, DawnLee. The first progression (ok any progression) can really throw you. Because we all hope the treatment we are on will last a really long time. But you switch to the new treatment, and it can start to feel a bit more routine. That’s how the game is played. (Sucky game.) We keep calm and carry on. I suspect your onc plans to use Taxol to get a handle on things, get you into remission, then put you on the pill chemo Xeloda for maintenance. All very do-able. Courage!

    ShetlandPony

    (Mbc liver mets six years and counting.)

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  • DawnLee
    DawnLee Member Posts: 19
    edited September 2020

    Cyathea, thank you so much for your reply, and your gentle encouragement. I’m not much for groups, but since I’m not ready for my younger kids 22yo daughter and 15yo twins, it’s difficult to discuss this with others right now. Of course, I’ve only found out today, so.....

    My biggest support system is my readers. I’m a suspense author, and have thousands of readers praying for me, and who are waiting to hear the latest results, but I can’t share with them, yet, either, since I think my youngest daughters follows my FB fan page. But at least I know they’re praying for me, and many of them, unfortunately, have been through their own cancer battles. Many still are. These folks have been praying for and encouraging me since my first dx. I’m grateful- when I had my first cancer, melanoma in 1990, I want an author and didn’t have a bunch of fan friends praying for me. In fact, I didn’t have the internet or even a hospital support group, so Im not alone this time. Thank you again.

    Right now, I’m she’ll-shocked, but once I get myself together I hope I can support and encourage others here.

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  • DawnLee
    DawnLee Member Posts: 19
    edited September 2020

    Hi Shetland,


    Thank you so much for this. You make it sound like progression-even repeated progression- is par for the course and doesn’t really change anything. And even though you don’t know me from a home in the ground, that’s exactly the attitude that I, with my personality and brain-need to have. So thank you, from the bottom of my heart. And SIX YEARS. That did me a heap of good, too.

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2020

    Dawn, Since Ibrance-Femara failed you right out of the gate, it is important to get some good genetics analysis on the cancer to try to understand why it is resistant, and direct you to specific therapies most likely to work. . For example, if the cancer has an ESR1 mutation in the estrogen receptor, you'd be a candidate for trials with Lasofoxifene or a SERD, or if it has a PI3KCA mutation, then those are sensitive to Piqray. A subset of tumors that resist Ibrance actually have high levels of PD-1` and are more likely to respond to Immunotherapy, so that is very important to figure out.

    Be aware that many clinical trials require no more than one or two chemos in the metastatic setting, so once you are stable on the chemo, you want to get that genomics data asap and look at your options and also be sure to check for a second opinion, preferably with a doctor connected to clinical trials at a major cancer center. Many people fear that their doctors will be offended, but all of the good ones are happy to have a fresh set of eyes looking at the data and used to working in a team approach, especially on the hard cases. As impossibly difficult as it is for you right now, you also have to try to be your own best advocate, and know that there are extremely powerful drugs out there but some work may be required to connect you to the right ones..Best of luck!!

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