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Bone Mets Thread

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Comments

  • Ieva
    Ieva Member Posts: 20
    edited July 2015

    Good morning/evening!

    Do You know something about androgen receptors (AR) for breast cancer? Since I know about mets in Spine, I read carefully some researches and in some are mentioned that AR overexpression can impact on tumor growth. I asked a pathological laboratory to check AR receptors from my primary tumor samples and I received answer today - 100% AR positive. I just don`t know what to do with this answer :).

    For example, this one

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995248/


  • heidihill
    heidihill Member Posts: 1,858
    edited July 2015

    Wow, Leva, 100% anything sounds like something very relevant. I did a quick Google and found this.

    http://www.esmo.org/Conferences/Past-Conferences/IMPAKT-2014-Breast-Cancer/News/Enzalutamide-With-or-Without-an-Aromatase-Inhibitor-for-Advanced-Breast-Cancer

    Enzalutamide can be combined with exemestane and effective aromatase inhibition (as measured by serum plasma estradiol levels) is maintained.

    There may be other trials/studies combining enzalutamide with other drugs.

    I have been on letrozole and anastrazole as well as Tamoxifen. My onc checks my estradiol levels regularly. I will have to read the article you linked on Tamoxifen resistance more carefully now that I am on Tamoxifen again.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2015

    Happy Canada Day, northern sisters!

    Annie - have a blast! Sounds wonderful.

    Dune!!!! We've missed you. Fingers crossed for a good PET scan result. Sorry you're in pain.

    Hydranne - Grump @ heater indeed.

    Xavo - thanks so much. As I've posted before (sorry for the repeat for many of you), I try to live by the PRO concept - Pragmatic, Realistic, and Optimistic. I don't plan on going soon, but it was good to get things lined up, and let me move on with other things. Quite therapeutic, albeit depressing at the time. I'm an engineer and project manager, so having that "managed" and taken care of helped me move forward.

    Of course, as goofy as these new kittens are, DH could rent them out as a circus acrobact act. :)

    Off to Auckland for two days of meetings. Should be good - they're bringing everyone into the Auckland office, so we'll get to meet some of the people from other outlier offices. And there's a group dinner tomorrow. So . . . I'll have lots to catch up on when I get back.

    Hugs to all,

    Terre

  • HopeFaithCourage
    HopeFaithCourage Member Posts: 80
    edited July 2015

    Hello ladies :) I can't remember if I've introduced myself on this thread or not! I was first diagnosed the end of 2012 with triple negative stage 3. Had double mastectomy rads and chemo. I've had pain ever since of varying degrees but able to get down to just ibuprofen. Then pain started to progress and spread across my chest. No insurance so I just kept working until I could get some and get a scan. Some how I was in denial that it could bereoccurence. Feb 2015 diagnosed with stage 4. Mets to sternum and soft tissue surrounding sternum. I've had radiation again. I couldn't tolerate xeloda which I know is weird. Just foreclosed on our house but moved into a beautiful healthier rental house I jus love. Scan ordered waiting on insurance to approve it. Doc said then we will discuss if side effects of chemo are worth the benefit. This has me very nervous. My brother had surgery yesterday to remove a cancerous mole. Incision is over 7 inches long just to get clean margins. They biopsies lymph nodes and waiting on pathology report. My poor mom! Glad to have you ladies :)

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited July 2015


    Hi LindaLou -  I know we've met and chatted on another thread.  Sounds like you have been through so much with your bone mets.  I so hope they continue to help you.  If you don't mind sharing where are your other mets?  Wondering what room we met under?  Were you on the drug trial Palbocicblib (Ibrance ) / placebo with me?  My mets are lungs, liver and bones (spine the worst), both hips, ribs.  Doing weekly Taxol chemo now.  Welcome to this thread!  Nice to see your name again.  Hugs!

    Cathy

  • tryn2staycalm
    tryn2staycalm Member Posts: 470
    edited July 2015

    HopeFaith-  Hi and welcome to you also.  So sorry you are going through all this and still have worries about cost, insurance, foreclosures.  Yes we still have family and all the issues that come with that also.  My family and friends have been a great support to me.  The first one I felt I could tell anything to was my brother.  He was my big brother of 1 year.  I lost him about a month ago and I am still dealing with the heart ache and loss also.  So yes I know your poor mom.  For me its my poor kids and my poor sister.  She has worried about me as we are very close and she just lost her brother too!  Thank God I live in Ontario, Canada and I don't have to worry about getting clearance for tests like CT's etc.  I hope you find the support and guidance and kindness I have the past 5 years.  Hugs

    Cathy

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015

    Good morning all you lovely ladies,

    Leva - Bestbird compiled a very thorough document - maybe you would like to request a copy.  I have it and refer to it very often.  I hope I copied the thread correctly.

    https://community.breastcancer.org/forum/8/topic/831507?page=1#post_4391326

    Annie - Have a nice trip and hope the weather will be good.  I will be celebrating Canada day with a new water tank!  Anne and Deanna - UGH on AC and furnace!  Cannot do without it though.

    Dune - yes, we missed you and happy to hear from you.  Holding your hand in spirit for your scan and hoping your pain is due to mets shrinking and healing.

    GG27 - Glad you enjoyed the stories.  How are you doing?  Are your rads finished?

    Terre - Have a safe trip and take care of that cold.  I had quite a chuckle reading your stories.

    HopeFaithCourage - Welcome to the thread!  Wishing you the best with your next chemo and that side effects are gentle on you.  Sorry about your brother also.  Congrats on your new house.  Keep us posted.

    I'm feeling very good.  Still barely no pain - thank you pain meds.

    Linda

     

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015


    Cathy - we must have writing at the same time.  Oh Gosh, I'm really sorry for the loss of your brother.  My deepest condolences to you and your family.

    Linda

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Good morning all. Thank you linda and Annie for thinking of me. I have been very involved with the Ibrance thread lately. I have not posted here for several weeks or months. Can't remember. I am about to say something which I truly hope will not offend anyone. I felt somewhat ignored by the women on this thread. When I tried to start a thread for us, I was completely ignored by all except Deanna. Not only was the support not there, no one even mentioned it in your posts whether good or bad.

    I understand we are all involved in our own lives, but there seems to be a constant response of some women to each other which I am not finding in other threads. Maybe you have been together longer or feel a closer bond with with each other.

    My therapist and I discussed this at great length yesterday. I stuff my feelings and then I just shut down instead of facing them and making them known. I am trying in my feeble attempt to make them known.

    I truly hope we all live long and happy lives. Linda, I know that your dear DH would not want you be alone. I have told mine the same. We have had 37 wonderful years together. He has been an amazing husband, father and friend. I would want him to be happy again. Just one caveat to him, never leave my children out of his life. I know he wouldn't.

    So there you have it. I hope I have not insulted anyone. That is not my intention. I just had to not stuff my feelings and express how I feel. I wish you all love, peace and stability in your lives. Myra.

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015


    Hello Myra - I'm so glad to see you here.  Thank you for sharing for feelings with us.  I truly appreciate it.  Please don't stuff what you're feeling anymore.  I apologize for not responding to your other threads.  When I don't feel comfortable with a subject and don't think I have valuable input, I stay silent.  That may not be the best way to proceed.  I hope you will continue to pop in this thread regularly.  I missed you.  In fact, I miss anybody who doesn't check in for a while.  It's very comforting for me to hear from all of us.

    Thank you for your kind words regarding my late DH.  37 years!  WOW!  You must have still had one foot in the cradle when you met your DH!  LOL  I wish you many, many more years with him.  Good luck with your upcoming scans and I hope Ibrance/Femara is killing all those buggers.

    Again, thank you and have a great day in your sunny FL.

    Linda

  • annieoakley
    annieoakley Member Posts: 653
    edited July 2015

    HopeFaithCourage, welcome but sorry you have reason to be here. You will find much knowledge and support here. Please know that there are triple negative women who are stage IV and have been NED (no evidence of disease). There is always hope, love your user name by the way. Sorry to hear about your brother but praying his pathology report yields good results.

    Cathy, so sorry for the loss of your brother. I have an older sister who I am very close to as well and she is terrified at the thought of losing me. Between her and my dh and daughters I fight onward. Yes we're lucky to be in Ontario, Canada where we don't have to worry about clearance for any of our testing. I think we take it for granted sometimes.

    Terre and Linda thanks for wishing me well on my trip, leaving soon!

    Myra, I am so happy to hear from you but so sorry you left the thread feeling ignored. I think I can speak for everyone here in saying that would never be anyone's intention. I feel terrible and I for one am glad you're back as I have been thinking of you. I have to say there have been times I have felt the same as you, where I post something and no one has commented or responded. One time I thought my posts were invisible to all but me. But then I thought maybe sometimes the thread gets so busy people forget what they've read or address a particular person that posted something related to their situation. I'm not making excuses, just trying to figure it out for you as well as why it may have happened to me. I just persevered, kept posting and although not everyone replies to me I am grateful for those who do. I have a funny thing that I always say to my friends and family, "I refuse to be ignored". They get a chuckle out of it but it's just my way of saying hey, please return my call or pay attention to what I'm saying. Please check back here often and let us know how you're doing and for now I will go to the ibrance thread to update myself. Much love and hugs, Annie

    Well I'm off for a couple of days, be back on Friday. Wishing all pain free days ahead, hugs to all, Annie

  • auroaya
    auroaya Member Posts: 784
    edited July 2015

    hello everyone and sorry not to mention everyone individually but the list is long and my memory short. I will try to address some of the things that were asked. My mom is visiting from Mexico where I grew up but I've lived most of my adult life in the U.S. Having married an American when I was 20. I had a series of unsuccessful relationships over the years and I am happily single. I have a daughter who is 26 and studying to be a lawyer (will grad in December) I have a 3 1/2 year old grandson with speech problems but he is a joy.

    Cancer wise I have mets to the bones with recent progression ( more lesions) . The biopsy was done because I had a couple of skin lesions one on the right armpit ( cancer side) and on the right temple both turned positive for cancer. Today I'm going for my Zometa infusion and will discuss with my oncologist any change in treatment although I doubt she will do that since I've only been in my current treatment a couple of months. My cancer is ER+.

    That's it on a long nutshell. I enjoy reading your posts and know that I'm usually "around"

    Aur

  • Xavo
    Xavo Member Posts: 244
    edited July 2015

    Myra, I perfectly understand your feeling and I am very sorry. I am new to this board and this thread, I feel I haven't found the way to tune in the conversations and dialogues on this thread yet. So I am also not really actively posting here. If I somehow contributed to making you feel a little bad about the responses you received from here, I apologize. Just want to let you know that I very much respect your straightforwardness and honesty.

  • GG27
    GG27 Member Posts: 1,308
    edited July 2015

    Good morning all! Myra, I too am sorry if I have contributed to your feeling left out. I try to read everyone's post & sometimes I only respond to certain people because those names are so familiar to me & honestly I can't remember the rest. And like others here, if I don't know or don't have anything to contribute, I don't post anything. It's not that I'm ignoring the post.

    I'm still exhausted from the last 10 days of appts & rads, so I'm just going to say that I hope everyone has a good week. I may not be around much. Take care everyone, cheers, Dee

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    Wow. Our ladies have been talkative. Yea ! I def had totake notes this time lol.

    Deanna - I agree we are so spoiled with medical care in USA but your 3 hour trip is still long. Sounds like a full day.

    Xavo - 5 year cure sounds great. Today sounds even better. I hope you will feel comfortable enough to post as often as you wish. Love to get to know each other better thru stories of ourselves. Also feel comfortable to lurk. Whatever helps you most

    Hope - welcome again. ☺

    Auroaro -you must be very proud of your dd. A lawyer. That's great. I often wonder what my it's are going to do in life. I hope it not only makes them Happy , and somehow helps people, I also of course hope financially it feels his needs.

    Annie - see you Friday. Thanks for letting us know. I hope you have an enjoyable time. Was it you asking about letrozol? I've been on it since end of June 2013. I don't experience a lot of side effects. Mostly just bone stiffness. Also I have to take it in the am or it will keep me up all night. In the beginning my hair started thinning, but that stopped quickly and is now not a problem. It is way way easier than I would imagine a drug to treat stage IV would be.

    Leva - you asked about my mets. I have had since diagnosis mets in bones. From the base of my skull to my tailbone there are too many mets to count. They have eaten away a lot of bones and sturdiness. I have had several procedures to fix compression fractures (8 I think ) plus some nerve damage caused me to get those nerves burned. I have some tiny mets on ribs, pelvis and sternum also. According to pet and ct and bone scans , the femara has kept it the same. No growth and no shrinkage. I'll take it

    Terre - love your story about your trust fund for cats. How adorable. We have 2 dogs. Tr are def a part of our family. I hope you guys can quickly find the home you are looking for in the right price range. Very smart and brave of you to be tackling this head on. Hope you feel better soon 😊

    Cathy \ trying to stay calm - sorry for the loss of your brother. Was it unexpected?

    Linda E- I hear ya about femara and libido but I find if I just fake it at first I will soon really be excited. Hope that's not tmi (too much info ) . ronatic Dh story. Thanks for sharing. To be loved by at least 2 men in your lifetime in incredible. Some people never find 1 that truly loves them. Glad dbf stayed. Sounds like a great guy and you still get your space. Best as both worlds. I am sure your late dhwoukd want you happy if he loved you I often think about my Dh remarrying. I really want him to be happy ( after all thus stress of cancer land ). I really want my boys to have the love from a maternal figure. Just don't call her mom !!!!!!!

    Lindalou - welcome! Spinal fusion sounds painful. Glad you are on the other side of that now. Since hormone therapy didn't work did you say on to chemo? What kind ? When do you start? What kind of tx schedule - like weekly or every 3 weeks ?

    Annie - happy Canada day! And you are coming to the states - how funny. Is that like our 4th of July ? So in the states ,what is there to do where you are going besides Dh (lol) ? Seriously thanks for telling us you were going to be away so we wouldn't worry. Hope your Dh enjoys his bday and you not enjoy the get away gift.

    Hydrane - thanks for the suggestions with the boys😀. They are 13 and 10.

    Gg - hi

    Dune - great to see ya. Hope taxol is in fact working on those cancer cells. Please let us know about your scan results when you get them. Holding your hand while waiting

    Myra - so very sorry your feeling were hurt. Please forgive us. I know I have felt like that before in as different thread. Felt like if I quit posting no one would even know. Not exactly the support I came seeking. Surely sorry you also have felt that. The truth is the thread moves Fast. Some days I feel well enough to take notes and somedays I just try to remember who said what and some days I haven't the energy to respond to any one just check in. I know many others here are in the same situation. Its so easy to miss soneone . I don't guess I know what you are talking about with you starting a thread ? What was that about? Some people def are closer on here. Some people just have been around longer thus know their situation better or just have such similar situations feel an especial close tie. Both on this thread and others there are several ladies that i speak back and forth from phone calls , mailing and recieving cards of support, or nearly daily texting . I would suggest to hang in here with us. Post often and let us get to know you better. There will be people who feel an esp close tie to you also. Give us as chance to know you, OK. Internet groups like this become like a family as in all families there are people who naturally have more in common. The good thing is there is enoug people posting for each to find that special bond and also enjoy the relationship as a whole family. Hope you stick with us.

    Awww...today is Finally the day my boys get home !!!! Hooray !! I am so excited. Dh left at 7am to meet his mother halfway (4 hours each) to pickup the boys. I know you guys are probably ready for me to quit talking about this. Lol. I missed their laughter in the house , I missed their wonderful cuddling ,I miss their humor , I simply missed so much about them. The will stop and grab lunch and snack all the way hone so I doubt they will be very hungry for supper. Guess ikk wait till tomorrow. I got all their favorites just have to decide what to make first. Hmm we got spaghetti, salad and garlic toast, and salsa chicken, corn on the cob, fresh brocolli and cheese , brocolli salad , fresh strawberries and cool whip , spice and angerlfood cake mix, fresh pineapple yum yum. Guess I better get off here and make me some lunch

    Hugs to all I a missed.





  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015

    Welcome HopeFaithCourage. It sounds like you've been through a lot with your home and moving and your brother, all of which has had to be extremely stressful. I know it's tough, but I hope you can do whatever it takes to mitigate that stress so that it doesn't take a toll on your own health. I firmly believe that stress is what precipitated my Stage IV dx (although it clearly had to have been brewing for some time), so I can't help but urge you to do whatever you can to de-stress.

    leva, thank you for that link. Very interesting (although I'm not on Tamox).

    Oh, Myra, I'm so sorry you felt dissed in any way, but I think many of us feel that way more often than you might realize. I frequently do after making comments that no one acknowledges, or even starting a thread (which I did not too long ago) that no one picked up on. On this particular thread, I honestly think it has to do with the number of participants and the more concerning content of some posts vs. others. Although some are very good at it, for most of us there is absolutely no way to acknowledge everyone and everything said, and I guess we all tend to pick & choose based on our particular mindset that day -- which is another thing. I know I try to keep up on the posts, but some days I just need a break, so I fall behind and probably miss a lot that truly deserved acknowleding. I honestly can't imagine that anyone here has ever harbored negative or disinterested feelings in what you have to say!!!

    That reminds me... someone here had also suggested maybe starting a FB page. (So sorry I don't remember who and don't dare flip back and lose this post.) Anway, although I already belong to two FB "bc sister" groups, I thought it was a nice idea -- maybe a place to share more than we do here.

    Cathy, my sincere condolences on the loss of your brother. I'm so sorry.

    Patty, YAY to your boys getting home! As if just being home and being with you isn't enough, I'm sure they'll be thrilled with the great eats you're fixing for them! Wish I could see their faces as they run to greet you!

    (((Hugs))) to all, Happy July, and Happy Canada Day! Deanna




  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2015

    Wow! As another newbie here, I must say I am very impressed wth the way Myra's concerns were addressed. Her concerns were addressed with legitimate concern and compassion. some of you ladies have known each other for a while, and some of us are still finding our way around the boards. Speaking for myself, sometimes I am so intent on soaking up information that I also forget to comment. Xavo was the first person to welcome me, and I didnt realize that she is new here too. Just know that I do read all the posts and appreciate all of you

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,354
    edited July 2015
    Myra,
    I think Deanna's post says it well. I don't often post to the bone mets thread because I am overwhelmed by trying to keep up with everyone. Some are so good at it but I'm not and I don't want to leave anyone out. I also have only one, now necrotic, bone met and no pain so I don't feel like I have much to contribute. Not enough stage IV cred, so to speak. However, I know I am welcome here and so are you!
    Caryn
  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    well said Deanna

    Welcome lynnwood

    its official. !!!! Boys called me from Dh truck. Truly on their way. Should be here around 4 pm. I should get my nap started so I'll be rested and able to stay up past 8pm. I am just too excited. Surely I have posted their pic before but just in case I haven't I am gonna go find one to post bbl

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    image

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    image

  • tina2
    tina2 Member Posts: 758
    edited July 2015

    Patty, the boys are adorable. Of course you missed them--I'm sure things were just too quiet around the house.

    Enjoy the homecoming!

    Tina


  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015


    Welcome Lynnwood - we're a great bunch of ladies here!  Jump in anytime.

    Patty - your menu sounds great, you're making me hungry.  You've posted pics before, but I always like them.  Your oldest looks like you.  They're both very handsome.  And no, not TMI.

    Deanna - that would be a good idea re FB.  Can you believe I don't have FB.  Maybe I should enter this world of civilisation...

    Caryn, always nice to hear from you.  Have you gone on your cruise yet?

    Dee - rest up and take care of yourself.

    Linda

     

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Ladies, thank you so much for all the kind and compassionate remarks I received. I am so glad I spoke up, I now understand so much more. My therapist was so right that if I stuff my feelings and don't express them, nothing changes. Here I feel so good and validated. Thank you again, I don't hold grudges, so you will definetly see me back here often. 😎 Myra

  • LindaE54
    LindaE54 Member Posts: 1,379
    edited July 2015


    Myra - Nerdy

    Linda

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,354
    edited July 2015
    Yes, Linda. I'm back and it was fabulous. Nothing like king crab legs and spectacular glaciers. Check out this thread for a few pics:

    https://community.breastcancer.org/forum/8/topic/786888?page=68#top
  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    exbrngirl. - awesome

    Myra ☺

    Lindae. - thanks.

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited July 2015

    some others have also already posted pics but my brainforgets so much. Anyone else wanna post some pics

  • dlb823
    dlb823 Member Posts: 2,701
    edited July 2015

    Patty, your boys are adorable! I think you'd posted the pool photo once before, but great to see a phone showing their cute faces! And I agree with Linda -- your 13 y.o. looks a lot like you, which you obviously know! And the younger one is adorable too. We can see why you're such a proud Mama, and why it was so hard having them gone so long! Oh, and I also loved reading about how you and your DH met!

    Myra, getting back to that thread you mentioned for a moment... I believe we all share your concern about what seems like a lack of awareness and research directed specifically at mbc. Thankfully, I think Holley Kitchen has opened the door a huge crack with her powerful video that was viewed by something like 47,000,000 million ppl in just a few days, as well as her resulting interviews. I know we have to do more, but I think most of us are at a loss for what to do. It's also difficult, I've observed, to get consensus on a discussion board, especially when so many women are dealing with the daily rigors of mbc and tx.

    I truly believe the tide is turning, as evidenced in this article I posted elsewhere today. http://www.fredhutch.org/en/news/releases/2015/06/... But if you have more ideas or want to brainstorm... and if you want to revitalize your thread or start a new one, you absolutely have my interest and support.

    Gotta go check out Caryn's photos...

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited July 2015

    Patty, can someone tell me how to post pictures? Still trying to figure out how to get both of my diagnosis posted right also, help!

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