Treatment for bone mets

Sue2009
Sue2009 Member Posts: 228
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

last year I was told I had bone mets & that it had probably been there for over a year . My left hip was so bad my radiation onc was concerned it would fx just walking around. My med onc had me do bone scans that showed no mets, was told the bone scans were waste of time & money. Any way, after getting radiation, changing from arimidex to tamoxifen & starting IV Zometta I was told bone mets stabilized last November.  Ca-15 started going up in Jan, new PET scan shows new tumors & others in spine & hips growing again. Now dr offering faslodex, possible clinical trial with drug UCLA testing, the P one. So here's my qx--if there is no cure, does faslodex just slow progression, and does anyone know what is reasonable life expectancy at this point. My med onc that I have recently changed from shot down numerous options of treatment from MD Anderson & my radiation onc saying they would not prolong my life & would not give me quality of life. I have been very upset over this since I have been battling over 5 years now. I am tired all the time but I push myself to get up and help around house, still have 2 boys home in HS.really want to see youngest graduate HS.

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Comments

  • bevin
    bevin Member Posts: 1,902
    edited March 2014

    Sue, I am sorry you are facing this and I'm not in the same space you are so I hope I'm not overstepping my boundaries; but is it possible for you to find a new oncologist, one that is focused on giving you as along a life with as good a quality as you possibly can, one that will fight with you and find you treatment options that for many others have prolonged their lives many years before progression to an organ. Your doctor doesnt sound respectful of your goals to try treatments and I know on these threads you'll see many many women live many years with mets to bones and the medications they place you on can keep progression at bay.  There is a stage 4 thread for bone mets that you will find many women just like you there willing to offer their help, insight and guidance. Good luck to you.

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  • kirstensmum
    kirstensmum Member Posts: 93
    edited March 2014

    Hi Sue 

    I too have just been diagnosed with mets to my right hip, but have not started treatment yet. ( having pet scan on Tuesday), so I can't help re question on life expectancy.

    I noticed that you had bone scans and the mets weren't picked up. This is what has happened to me also, mine was picked up by CT scan. When looking back on a previous scan in September last year they found that it had been missed and had now progressed. 

    I also hope that you can maybe change your Dr and received further treatment to prolong life.

    All the best 

    Jennie

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  • car2tenn
    car2tenn Member Posts: 515
    edited March 2014

    Hello sister stage 4 breast cancer friends via internet.  I thought I had done all correctly as a medically trained nurse practitioner...3 mammograms in 5 years showed nothing.  8 weeks after the last one in late july 2013 I felt a lump..Fast forward.  diagnosed  with stage 4 boom right off the bat.  Just to let all know of a wonderful resource...I have just returned Saturday from 2 weeks at the Proton Institute in Jacksonville, Fl at Shands Hospital (affiliate with U. of Fl)

    I had treatment on the  ultra modern Vero machine on T7. One is treated extremely well by the ultimate professionals.  Some are lucky enough to be cured but most are (like myself) told that they have a chronic diagnosis but should have a happy long life...Hope it helps.  I feel great and the radiation there is so modern I had no side effects.  Carolyn from Tn/Fl

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  • dlb823
    dlb823 Member Posts: 9,430
    edited March 2014

    Sue, I'm so sorry to read what you're going through.  I've recently been dx'd with bone mets, and have just gone back to UCLA for my care, although, at this point, they're still testing and sorting out the extent of my problem.  But what I wanted to share is, I can't imagine better advice than you would get from MD Anderson, so I guess I would question the experience of any onc who disagrees with their tx recommendations.  Also, without being a doc, I can tell you that everything I've ever read or heard strongly indicates that bone mets alone can be treated for many, many years, but one of the keys is to have adequate pain management, something I am still working out.  In fact, someone on another thread (maybe the Bone Mets thread?) recently posted that she's in her 14th year.  So you absolutely need to find an onc who is onboard with this kind of thinking.  And if you haven't already, be sure to check out the Bone Mets thread.  I've gotten some extremely helpful information there.   (((Hugs)))   Deanna

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  • lalenlou
    lalenlou Member Posts: 25
    edited April 2014

    I knew I had BC in my T8 vertebrae before my mastectomy.  Radiation and chemo "killed" it.  I found out today after a bone scan that it is back and now, also, in my T6 vertebrae and both of my 9th ribs.  My oncologist said That I will continue getting my Herceptin and Perjeta chemo every 3 weeks and Zometa every 3 months.  She is changing my anti-estrogen med from Arimidex to Faslodex.  Anyone else on Faslodex?  What does Faslodex do beside stop the estrogen?

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