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    Calling all Stage IV Metastatic BC Survivors
    jbocean40 posted:
    I was recently diagnosed with Stage IV metastatic BC. Original diagnosis was in May 2007. I was triple positive then. The latest biopsy shows ER+, HER2+, PR-

    I have bone mets confirmed. In Mar, I started getting short of breath. My oncologist missed this classic sign of lung mets - at a minimum she should have looked for clots. 2 weeks later I was in the ICU fighting for my life, recovering from what I was told was a simple procedure called a Video Assisted Thoracotomy with Talc Pleurodesis. I spent 26 days in the month of Apr in the hospita, 14 in the ICU.

    I am looking for anyone on this site that is stage IV with bone and or soft tissue mets. I want to hear your story. What treatments have you received? What has been your experience with the medical establishment? What side effects and how do you manage those? Particularly neuropathy and pain? What about working? What types of support have helped you cope?

    Thank you! This seems to be such a great resource and community of survivors.
    jbocean40 replied to jaydbraz's response:
    Thanks jaydbraz. I've gone through a terrible experience with metastatic BC and I just wanted to connect with others who may be able to offer some perspective. There are other sites that may be easier to use. I'm not giving up - just on this site.
    minalee replied to jbocean40's response:
    Hi...I just now found your post....I wish I had seen it when you had first posted, because I would be happy to share my story of bc with bone mets....but I am not sure if you are still on this site. I agree that it is all way to confusing. I have not found a place yet to share my story and hear from others...but something more intimate and direct would seem to be a better fit. But your request touched me, I can relate, and I feel compelled to try and connect with you. I hope you will respond, and then I will happily share all the info. I have.

    all the best,
    jbocean40 replied to minalee's response:
    Dear Minalee,

    I am here and still want to heare your story! So much has happened to me over the last few months and I'm searching for a way to connect with other survivors. Your note is a godsend for me.
    At this point, I can add lung mets (I've had fluid drained 4 times and going back tomorrow for another) and brain mets to the list. I do whole brain radiation therapy (WBRT) every week day 22 treatments). I take Tykerb and Herceptin and Zometa. All the drugs, chemo (was taking Xeloda till I started radiation), and the emotional ups and downs are taking their toll on me.

    Please share with me your circumstances and experiences. I do look forward to corresponding wtih you.

    rachael67 replied to jbocean40's response:
    Joanne, I am so sorry to hear how many challenges you are dealing with. I can only imagine the frustration and worry!

    We will all board the Pink Bus to escort you to your radiation txs (When will that finally be done?), and we will be with you in spirit to offer any and all support!

    Again, I invite you to join the main group of Breast Cancer. Simply click here Breast Cancer Exchange and you will be taken to the site. It is much more active and there are many folks who are in your same circumstances or have been there/done that!

    Know you will be in our thoughts, and please let us know how you are doing.

    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
    jbocean40 replied to rachael67's response:
    I find the main Breast Cancer Exchange too confusing and busy. I gave up until Minalee posted her reply. When I entered a post on the exchange - it devolved into a useless lesson of how to use it and providing information on other members.

    My only goal here is to connect with Stage IV survivors and hear their stories/compare notes/ support each other. With all the lovely warriors on this site, I did not think it would be so hard.

    rachael67 replied to jbocean40's response:
    Joanne, I have put out a call on the main BC Exchange to invite others to come here on occasion and support folks who, like you, appear to be more comfortable on this more quiet board. I hope there are responses, but...?

    If at any time in the future you wish to once again dip your toe into the waters of the main exchange, I think you soon will get used to it, and find folks willing to give you the information and encouragement you seek.

    Meanwhile, know that you remain in our thoughts.

    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
    jbocean40 replied to rachael67's response:
    So I did post the exact same message "Calling all Stage IV survivors" on the exchange 1 month ago with no results. Nobody contacted me except to tell me how to use the exchange. The same as here, I'm afraid. I think I will keep a watch out for Minalee's reply if she has one and meanwhile find another way to connect to the Stage IV survivors out there. I know there are so many and I need to connect with them somehow.

    I'm sorry, but I'm scared and frustrated and this just isn't the least stressful way to expend what little energy I have left.

    Ann19601960 responded:
    I first had breast cancer in 1998 it came back in 2008. I had my hip and femur removed and on Lupron Shots to keep Estrogen down and Femarra. I am on disability but feel good
    and my last scans were clean....2 years!!!
    rachael67 replied to Ann19601960's response:
    Congratulations, Ann!

    I see on the main BC board that you are running into financial problems. Check in the tips listed on the right side of that page...There may be something listed which will help. (I will post on that page as well.)

    Holding you in my thoughts.

    Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
    SunnySherrie responded:
    Hi jbocean40, my name is Sherrie and I go by SunnySherrie on these boards. I'm a 12 year/11 year bone mets survivor who has recently been dx with brain mets due to the breast cancer rearing its ugly head once again in my body! I was dx with the bone mets in my left si joint in 2001. I had done well up til Aug.2012 when I started having what I call "pressure headaches". I was on Femara which worked wonderfully for me til the brain mets and of course I've been taken off it...I'm awaiting another med. since I am ER/PR and will see the radiation onco. tomorrow hopeful that I will start the radiation to my full head tomorrow as I didn't go on and take it back in Sept. when it was set up, I called them to say I didn't need their services right now...well after 2 Duke recommendations I know now that I should at least do everything I can even if it does come back later on. I hope I can help you with the bone mets part of things. I did have 18 radiation treatments back in 2001 and then 10 more treatments later in 2002 for pain management due to the bone mets. Yes I still have some pain from them, but it's not so bad that I can't stand it. Nice to meet you!
    Ann19601960 replied to SunnySherrie's response:
    Sunny how are you? I am a 14 year/4 year Bone mets. Hip bone in 2009. I am on Lupron shots now and Femara........I know the drill and am so sorry your going through Brain Mets.
    Hope to hear from you. I took my last Infusion Friday I take them every 6 weeks.
    Ann19601960 replied to rachael67's response:
    Rachael are you still out there. I think I got lost and just found my way back. I am here still on Lupron and Femara. Still having financial issues also ):
    Ann19601960 replied to jbocean40's response:
    Are you still on this board.....? I am a stage 4 14 year 4 year bone mets....right hip

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