Bone Mets Thread

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2017

    Babs- I’m sorry that DD is moving away! I like to keep them close by also and still feel sad for a day or two when I part with one of mine. A saving grace is that she is moving to a place that is nice to visit- and easy to get to from NYC. Where will she give birth? I hope you will be there and feeling good. I hear that grandkids are one of life’s true pleasures and I look forward to the experience.

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  • Milaandra
    Milaandra Member Posts: 271
    edited October 2017

    Thanks everyone. I checked my temp and it seems okay (tiny bit higher, but it's really hot here) Thankfully, my leg is improving, so I think I can wait until I'm back home. It's time for my scan anyway, and the appointment letter is likely waiting for me. I really should have thought this through before picking a destination a 40 minute sea plane trip away from the nearest hospital! Eeks!! Photos next weekend!


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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Nkb. DD is giving birth in Paris. We'll get there 2 days before ( it's planned because she's having a c section). I'm staying 3 weeks and DH is staying for 2.

    Yes grandchildren are the best!

    Bab

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2017

    Babs- sounds lovely. We are having a great trip and once again traveling in October is the best of both worlds for travel. I probably told you that DD1 is due in Feb. thrilled! Stay well

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  • cling
    cling Member Posts: 333
    edited October 2017

    I wonder if anyone has taken Abemaciclib since it was approved the end of last month? I have a meeting with an Onc on Wednesday to discuss the participation in a phase 1 trial the LY3300054 and Abemaciclib (NCT#02791334).

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2017

    Cling- that sounds like a good trial, what have you been taking the past three years?

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  • zarovka
    zarovka Member Posts: 3,607
    edited October 2017

    cling - you want a high mutation burden for PDL-1 type immunotherapy to be effective ... have genetic testing before you go that route.

    >Z<

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  • Leapfrog
    Leapfrog Member Posts: 464
    edited October 2017

    Ceci in answer to your question asking how long before bone mets spread to organs, I have had bone mets for about two years. I was told I would have had them for a year before I was diagnosed Stage IV de novo with bone mets. I've been on hormonal treatment for almost a year without any progression. See my treatment below. I never, ever think about when or even if my mets will spread to any other organs. Some of us will live for years on hormonal treatment with bone mets. The hormonal treatment is very slow acting and it takes patience, faith and trust to believe that you WILL live and that the tumours WILL regress. We know we will never be cured once we're Stage IV but that doesn't mean we can't live a good life and to live a good life we need to live a FEARLESS life. That doesn't mean denial; it means not focussing on what can go wrong but to enjoy all the moments we're living right now and to have the intention of continuing that way. We have a choice; we can worry and stress about possible progression or we can decide not to think about it, take our tablets, turn up for appointments, have our blood tests and scans and, in between that, forget about our cancer. Sure, it might progress but if we are one of the lucky ones who have not yet or do not progress, let's just enjoy life while we can. I hope this puts it into perspective for you because I believe we should make hay while the sun shines, even if it is shining through the clouds.

    Hugs

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  • zarovka
    zarovka Member Posts: 3,607
    edited October 2017

    It doesn't necessarily spread to the organs ever, but I was diagnosed with bone and liver mets from the start. Not planning to kick the can anytime soon. I don't feel it is the end of things if it does spread to organs. Just a different set of challenges.

    >Z<

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Nkb. Is this your first grandchild ? Is DD1 having a boy or girl? Congratulations!!!!! I am enjoying this time so much. Unlike with my DIL from hell they share all the special moments with me. We did the layette on Sunday. So much fun!!!

    Enjoy every minute!

    Babs

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  • cling
    cling Member Posts: 333
    edited October 2017

    Cure-ious: I have taken AIs ( Arimadex 6 month, Aromasin 2+ , then Faslodex 3+ years) until May then switched to Halaven.

    My TM continued to rise slowly for 5 years, but I never have any solid tumor and then in April the CT indicated progression to Gerota's fascia, and appeared to be a “typical lobular spread". I had IDC with lobular features, but was never considered as ILC. So, I am totally confused at that point.

    I am going to talk with this new Onc, however I am not sure I will qualify for this trial, but would like to know Abemaciclib from Onc better.

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  • cling
    cling Member Posts: 333
    edited October 2017

    Z, Thanks for your reminder on genetic testing. I dug out the Foundation One report done in May 2017, it does show I have several genomic alterations (I don't really understand, the only one I recognize is PIK3CA. I will ask Onc on this report and discuss further.

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2017

    Babs- yes, first grandchild! I already got permission to spoil her! I can’t knit so she won’t get 23 sweaters over 2 years like my first daughter did!

    Leapfrog- I completely agree with your philosophy. I spent too much time worrying the first time around. Now, somehow because the dreaded Mets have occurred I don’t think of myself as having cancer most days. Letting go or ?- I don’t know. I think denial is fantastic- as long as you know what’s going on and take care of business.

    Does anyone know how long it takes for bones to strengthen again once the bone mets are gone? Does the fracture risk lessen considerably over time? Just curious.

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited October 2017

    I pinched this from Deanna but everyone should see this😊


    https://www.facebook.com/deanna.baldwin.5/posts/1865456483479369

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited October 2017

    Cling- what we'd like to know is why the trial you are considering is being suggested for you- in particular, are they seeing good results combining Abemaciclib with immunotherapy? The question Z is asking you is whether you have any indications that your tumor has high MSI mutations- because immunotherapy works great on tumors with mismatch repair mutations. Its the MSI(microsatellite instability) number we are wondering about..

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  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 285
    edited October 2017

    Thinking of everyone with all of our struggles. I've been away so I have not caught up on all of the threads yet. Good luck on your trip Babs, llimae, sounds like you are taking the bull by the horns. Sorry for all of the progression.

    I'm leaving for Africa this week so I won't be in contact then after I get home hopefully this Xeloda will still be working for me. Its so much worry, I have bitter sweet thoughts about this trip, I had planned to live there in the future, but I feel like this might be my last trip. I'm going to make it a good one!

    Love to All of you!!!

    Anita

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  • babs6287
    babs6287 Member Posts: 2,021
    edited October 2017

    Anita. Don't think that way. None of us have a crystal ball. Just enjoy this trip as much as you can. We need to savor every good moment!

    Bab

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  • Nkb
    Nkb Member Posts: 1,436
    edited October 2017

    Photogirl- have a great trip. Africa seems like a big trip I realize. I understand what you are feeling. When I was in the Vatican in 2014- I kept thinking (and crying a bit) that I would never see the Vatican again. Also felt that way here in Paris at the Sacre Coeur. But- who knows? It’s great that you are going- hope to see a photo or two at some point.

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  • ceci4555
    ceci4555 Member Posts: 59
    edited October 2017

    Leapfrog thanks a million as always, I'll try to think that way, it's harder for me because I've been quite mentally ill since my first diagnosis (major depression, generalized anxiety). Thanks to everyone else who answered too. And lovely trips to all those of you travelling! Have fun.

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  • theziz
    theziz Member Posts: 159
    edited October 2017

    Where in Africa are you going to? I'm from Mozambique.

    Ziz

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  • cling
    cling Member Posts: 333
    edited October 2017

    Cure-ious and Z: thanks for your knowledge on the research. Any other question I should ask this trial Onc? My regular Onc of 7 years thought I may want to try immunotherapy, and her partner happens to have a trial that will start soon. I finally got the trial description from the trial coordinator, and found it is a phase 1 new drug combined with Abemaciclib. If I am not qualify or I decide not to do the trial, I will consider asking my Onc to put me on this new drug.

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  • marylark
    marylark Member Posts: 178
    edited October 2017

    Hi Cling,

    I would be interested in hearing what the onc tells you. Is the trial site at MD Anderson? I saw they are participating in this one.

    Thanks,

    Mary

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  • cling
    cling Member Posts: 333
    edited October 2017

    Mary, this one is to be opened at San Antonio. I will try to remember what the trial Onc says and share with everyone here. Just hope I can understand those medical terms. I am really an illiterate in medical field.

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  • jensgotthis
    jensgotthis Member Posts: 937
    edited October 2017

    have a great trip Anita! Bring us lots of your incredible photos back

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  • marylark
    marylark Member Posts: 178
    edited October 2017

    Whatever you can share will be wonderful. I'm treated at MD and am interested in this trial. I will be there next month and will mention it to my oncologist. I'm currently on Xeloda, but would love to find a way to have good results without chemo.

    Thanks!

    Mary

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  • Kimchee
    Kimchee Member Posts: 105
    edited October 2017

    As anybody tried those Cancer Treatment centers of America ?

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  • Iwrite
    Iwrite Member Posts: 870
    edited October 2017

    Enjoy your trip Anita! Africa is such an amazing experience:

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  • GraceDD
    GraceDD Member Posts: 38
    edited October 2017

    Illimae, TM at 12 !! You're my Hero!! My TM is "34, Kissing Normal" and I'm aiming for "10" as MO suggested. Can't wait to dance with NED.

    Lots of encouraging news, and support, up and down this thread. I'm so glad we have each other, and are in this together!.

    I opened a facebook page, just to post the link to Laura Odem's Rise Up Campaign for "Metastatic Breast Cancer Awareness"...


    It felt good to share this with my loved ones, to help them understand whats unfolding.

    Love and encouragement on your journeys. May we all Celebrate Our Lives, surrounded by love! - Diane

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  • Leapfrog
    Leapfrog Member Posts: 464
    edited October 2017

    zarovka.....great attitude. I intend to keep mine the way it is now. Enjoy every moment of this glorious life.

    Anita....have a really great trip.

    Babs....love your attitude, as always.

    Ceci....I understand, love, just do your best and we'll all be here to support you, ok? No one judges anyone here. We're all different and we all have our own particular strengths, which we share with each other. Hugs xxx

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  • PHOTOGIRL-62
    PHOTOGIRL-62 Member Posts: 285
    edited October 2017

    Thank you Babs, I’m planning on having a good time putting cancer out of my mind. Thank you ladies for the well wishes. Ziz, I will be in Namibia this time. I’ve always wanted to go to Mozambique, the closest I got was St. Lucia doing some diving with the ragged tooth tiger sharks. Great diving there. One day I hope to go there. I’ve spent a lot of time in Zimbabwe, South Africa, Botswana and Namibia. I love it there so it’s always on my bucket list.

    Hugs 🤗 to all,

    Anita

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