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Annaswe
Annaswe Member Posts: 55
edited June 2014 in Palliative Therapy/Hospice Care

Hi, everybody!

I was diagnosed 18 years ago and 10 years later it was metastatic. Lungs, liver and bones.

After chemo and radiations it all stopped and my life went on. Sorry to say my hip is now totaly broken and I need  surgery. The doctors don´t know how to fix it so I just wonder if anyone had this operation. For 8 years I have had this problem and now I can hardly walk. My doctor tells me

it´s not commen to live so long with metastatic cancer..but I hope someone else does. If you heard anything like this, please let me know.

Anna from Sweden

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2008

    Bumping this up for Anna. 
     
    Anna, perhaps if you copy and paste your post on the recurrence and metastatic thread you may get more views and responses.
     
    I'm sorry for your difficult situation with your fractured hip. Can you go to a university medical center in Sweden, where they may have much experience with bone metastasis from breast cancer?
     
    Wishing you strength and continued determination, 
    Tender 
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  • katie11
    katie11 Member Posts: 2,514
    edited July 2008

    Anna,

    I also have mets to the bone, diagnosed from the start along with the bc itself 2 years ago.  With the drugs that are now available, women are living much, much longer with advanced breast cancer.  I agree with Tender that it's probably a good idea to post your questions on the recurrence and metastatic board where you will find a lot of useful information and support.

    Katie xx

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  • TriciaK
    TriciaK Member Posts: 362
    edited July 2008

    Hi Anne, I saw your thread and not sure if it helps but wanted to tell you about my friend who had a similar problem last year. In her case her femur broke suddenly having had bone mets for four years. The surgeon (i think) put in a couple of metal rods to hold the bone in place, recovery was slow so she did need a wheel chair for a time but could shuffle around her home.

    I hope your Dr's can operate and ease your pain asap, if not look around for recommendations for a second opinion on this maybe? Sorry I can't help more but you're not alone in having this happen.I should mention we live in Ireland so am sure a similar op should be available to you as she had as we're not that far away! My best wishes to you..

     TriciaK

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  • Annaswe
    Annaswe Member Posts: 55
    edited July 2008

    Thanks for answers. I´ll try on the recurrence and metastatic board too. The big problem seems to bee my bones  are so veak. They talked aboat metal roads to hold the bones in place but right now the surgeon don´t want to do anything.

    Anna from Sweden

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited July 2008

    There are several ladies I have heard of that got rods to strengthen their bones before they broke and it made a big difference!  Do you not have access to adredia or zometa their?  Also, there is a drug called bonefos I think that some people use to help strengthen their bones.

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited July 2008

    Anna,
     
    Other drugs which seem logical in your situation are of course oral calcium supplements (about 1200 mg per day)and Vitamin D supplements (2000 IU seems reasonable and many oncologists are suggesting higher with active breast cancer).
     
    Do they give you Zometa 4 mg IV infusion over 20 minutes of longer each month if your kidney function is normal? This is a real priority given your situation. Zometa is a bisphosphonate which in metastasis helps strengthen the bones, amongst other. If your blood calcium is running high, you have to be closely monitored after receiving this drug for about 7 days, as there can be a sudden drop from where you were to a new low which can be dangerous. Your oncologist should advise you on all of this.
     
    Are you on active hormonal treatment for the metastasis in the bones? Fulvestrent (Faslodex) is an IM injection that is especially used for bone mets that have not responded to other hormonals.
     
    Lastly, has any one biopsied a bone met to see if it shows the estrogen receptor (ER+) and by chance the HER2 receptor? These markers in ER+ disease can switch, and if you are HER2+ you would be a candidate for any number of antibody treatments against HER2 breast cancer.
     
    Hope this gives some potential ideas. Thinking of you,
    Tender 
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  • Annaswe
    Annaswe Member Posts: 55
    edited July 2008

    Thanks for your answers again!

    When they finally found out that I had bone mets I started with Aredia right away and after 2 years I had zometa for almost 6 years. Now My doctor wont me to try bondronate (pills) becauce

    he is afraid of the side effects from zometa after having it so long. All this time, 8 years my bone mets didn´t progress at all but my pelvic was full of them from the start. I can´t think of my situation today without zometa.I`m on Arimedix as well. My hipjoint has now moved up into the pelvic because it´s to weak. Can´t walk without crutches( sorry, not sure of the right word) but the doctors think I`m doing well after all but I don´t agree...

    Anna from Sweden

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited July 2008

    Anna, have you found out mets forum yet?  You will get so much more support there, not all the mets girls come over here and read and I know of at least one person that just had rads to the pelvic area for her mets.  Maybe there will be more there to help answer your quesiont.

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  • Annaswe
    Annaswe Member Posts: 55
    edited August 2008

    Yes, I write on that forum too. Cant have anymore radiation. ´LuAnn you are right, lots of ladies

    living with mets on that board but none that I know of who had the kind of surgery I need.

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