• Does anyone on here have metastatic breast cancer?

    Asked by Denise on Sunday, February 18, 2018

    Does anyone on here have metastatic breast cancer?

    23 Answers from the Community

    23 answers
    • Ejourneys' Avatar
      Ejourneys

      I don't, but there are metastatic BC patients on the weekly breast cancer social media (#bcsm) chats on Twitter. We meet Mondays at 9 PM Eastern. More info here:
      http://bcsm.org/

      There are also these resources:

      Metastatic Breast Cancer Alliance: http://www.mbcalliance.org/
      Metavivor: Metavivor.org
      MET-UP: http://metup.org/

      The Metastatic Breast Cancer Project -- https://www.mbcproject.org/ -- is spearheaded by the Broad Institute of Harvard and MIT along with Dana Farber Cancer Institute. This is direct genomics research focused solely on metastatic breast cancer. This project is a game-changer on many levels, not least the level of patient participation and collaboration. "If you have metastatic breast cancer, join a nationwide movement of patients, doctors, and scientists by sharing your tumor samples, your medical information, and your voice. Together, we can speed the development of future therapies."

      over 1 year ago
    • GGP's Avatar
      GGP

      Follow this link to find 1185 people on this site that have stage IV (metastatic) breast cancer.
      https://www.whatnext.com/search/users?search%5Bfilters%5D%5Bclass%5D%5B%5D=Diagnosis&search%5Bfilters%5D%5Bcondition_path%5D=45

      This is how I found them, click on the people tab, then on the left of the page look for the search box, and click on cancer, then breast cancer, then stage IV, the results are given in the link up above.

      over 1 year ago
    • GGP's Avatar
      GGP

      Part of the link above didn't highlight, copy all of the link and paste it in your browser and it will display correctly.

      over 1 year ago
    • JudyW's Avatar
      JudyW

      Yes. I was diagnosed in May with MBC.

      over 1 year ago
    • MoveIt2012's Avatar
      MoveIt2012

      I was dx sept 17

      over 1 year ago
    • mommasan's Avatar
      mommasan

      Yes, Denise, last September we discovered that my breast cancer had metastasized to become a brain tumor. After it was discovered I had a craniotomy followed by a short stint of Rehab Therapy. I'm home now and doing well, but I have an MRI every 3 months just to watch out for more trouble. Thanks, ejourneys and GGP for the support group info.

      over 1 year ago
    • Ritasuzi's Avatar
      Ritasuzi

      Yes. I do. Diagnosed May 2013. On anastrozole & stable

      over 1 year ago
    • BCMET4's Avatar
      BCMET4

      Yes I was diagnosed in Sept 2017 and I am on Letrazole and Ibrance. I am doing very well now. Downside Ibrance cost is sky high so be prepared and try to find help with your co-pay or contact manufacture for help. I was shocked to find out that after breast cancer this is not that uncommon! Should have been some kind of MRI or bone scan done after a few years. I was 7 and a half year good when I found out.

      over 1 year ago
    • mimimets' Avatar
      mimimets

      I was diagnosed with stage 3 in 2007 and in 2013 became metastatic. I was on Afinitor/ Aromasin for 2 years, currently on Ibrance/Fasoldex since August 2015. I belong to several closed/private MBC Facebook groups just for metastatic breast cancer.

      over 1 year ago
    • PinkPeony's Avatar
      PinkPeony

      Yup. Mets to spine and ribs, 2016.

      over 1 year ago
    • gailfitz's Avatar
      gailfitz

      Yes. Mets to spine and skull Oct. 2016. I am on Xeloda.

      over 1 year ago
    • Plaap's Avatar
      Plaap

      Yes. Diagnosed 12/2014. Found out I was metastatic 2 weeks before I finished chemo. I’m now on anastrozole and monthly xgeva shot. Holding my own right now. Tumor markers are climbing after being stable. So not sure why but last ct didn’t show anything new.

      over 1 year ago
    • BCMET4's Avatar
      BCMET4

      Pink peony what are you on presently

      over 1 year ago
    • Heatherbelle's Avatar
      Heatherbelle

      Yes, i was dx at stage 2 initially in 2010, in 2014 i was dx with mets to some lymph nodes on my clavicle & another spot of nodes near my armpit. Im also triple negative, so ive been on several chemos to keep it under control. I crashed my truck fall of 2016, i had a seizure while driving and they found brain mets when the ER ran all these scans/imaging on me. Had successful brain surgery, followed my radiation to my brain, so far it hasn't reared it's ugly head back in my brain or any other organs. I started a new kind of drug earlier this year, a parp-inhibitor drug called Lynparza that is an ovarian cancer drug that was recently approved for use in metastatic, BRCA+ breast cancers as well. Im doing well on it, feeling well and more like "the old me" than i have in the past 8 years. Ill have a PET scan in the coming weeks to see how it's working. It gets hard sometimes. It gets scary sometimes. Im 42 now, my husband of 17 yrs divorced me shortly after my stage 4 dx, so now I'm a single mom to our 2 amazing daughters who are 9 and 17, as well as a new grandma. These 3 girls keep me going- they keep me living, smiling, happy, hopeful, and they keep me young AND young at heart. Bless you all & Keep on Truckin...

      over 1 year ago
    • dianalynn's Avatar
      dianalynn

      Yes- six years now!

      over 1 year ago
    • Lola27's Avatar
      Lola27

      Yes, I’ve had MBC for twelve years.

      over 1 year ago
    • BCMET4's Avatar
      BCMET4

      These statistics are very encouraging to me since I was just dx in late Sept 1017. Heatherbelle, you are awesome!! What a journey you have been on and can still keep upbeat. I am sending everyone energy and strength and love. Lola27 12 years!! what were you on then and now and where is your mets?

      over 1 year ago
    • Lola27's Avatar
      Lola27

      I’ve been on several chemos but right now I’m on Ibrance, Faslodex and Xgeva. I have liver and sternum mets.

      over 1 year ago
    • CASSIEME1's Avatar
      CASSIEME1

      Heatherbelle,
      that is so horrible that he did do that to you. I am so glad that you are ok. miracle and blessing to you.

      over 1 year ago
    • BCMET4's Avatar
      BCMET4

      Lola27, how are you doing on Ibrance? Are you getting help for the co-pays on Ibrance? Ibrance and Xgeva so expensive unless you can find help its pretty impossible to be on them and have good insurance!. Was told you could contact the manufacture for help.

      over 1 year ago
    • Lola27's Avatar
      Lola27

      I’ve been on Ibrance with no progression in 2 1/2 years. My insurance covers the cost and I have a grant for co pay assistance.

      over 1 year ago
    • BCMET4's Avatar
      BCMET4

      Glad to hear that. I am also on a grant to pay co-pay but this is my second grant and they don't last for more than about 6 months due to the high cost of Ibrance. you can only use each grant for 1 year. If you use it up before the year is up. then your stuck. You cant apply for that grant until that year is up. Can I ask...what type of grant are you on with whom?

      over 1 year ago
    • Jamison's Avatar
      Jamison

      I was initially diagnosed with stage 2 ER+ /HER- in 2004. Had the usual surgery, chemo, radiation, then 21/2 yrs of Tamoxifen, followed by 2 1/2 yrs of Anastrazole. Totaling 5 years of adjuvant hormonal blocking medications, with no side effects. MBC diagnosed in 2017 with mets to lung. Now on Letrozole and Ibrance. Out of pocket, Ibrance costs an outrageous approx. $5700/ month. With insurance, the copay is $2300/month. Insanity just to keep living!! Fortunately for this coming year, I am on a grant, and I am doing well on the meds, just a little tired and some low white blood cells. But Neupogen shots boost the low cell counts and naps help a lot. I do whatever I feel like, whenever I feel like it and enjoy the time I have with my friends, so grateful for the life I have. We are all different of course, and our reactions, physically and emotionally will be unique to each situation and medication. It is good to share our experiences here if only to just find a little normalcy in a crazy, unforgiving world of medication and chronic disease. But we are still alive, in whatever shape or form, and we all have a gift to offer, if only to share it here with a kind word of hope to someone else who is struggling. There is no understanding why this happens to us, all we can do is make the best of our situations. The fact that we remain alive enough to appreciate the sunrise and sunset of each day, the laughter of a child, the warm touch of a loved one, ice cream....all reasons to celebrate another day. Do the best you can to see the joy in things and it will change your perspective, if only for a moment.

      over 1 year ago

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