liver & bone mets

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cindyd1111
cindyd1111 Member Posts: 9
edited March 2014 in Breast Cancer #1
I have breast cancer with mets to liver & bone. Mets diagnosed in Aug. Had radio ablation, and am on Lupron, sodium phenyl buterate and xeloda. Am 41 and looking for anyone else who has done well:) Have had breast cancer for 5 years, and am starting to have a lot of pain from mets.

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  • jeancmici
    jeancmici Member Posts: 665 Member
    #2
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    Cindy,

    Do I understand correctly- you were initially diagnosed with cancer five years ago. I had mets to bone diagnosed in August also - began injection monthly - then every three weeks of Zometa for the bones. Also have lung and liver mets. Did not have radio ablation YET ( in your liver?)as I am taking Navelbine. I don't know what the sodium phenylbuterate is.
    Your pain is probably coming from the bones - I take oxycodone every day - sometimes alone and sometimes as percocet which is oxycodone with tylenol. Mets are not curable but often go into remission for some time - that's what my oncologist has said - it is so individualized.

    I am not out of the woods yet but thought I'd write to you anyway to compare notes.

    Good Luck,
    Jean
  • bpcbrinks
    bpcbrinks Member Posts: 31
    #3
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    Hi Cindy,
    I have bone mets (one in hip and 2 on my spine). My hip was in a lot of pain last year and that is what alerted me to a possible met. Spine hasn't given me any trouble yet. I take Vioxx for my hip and it works wonders. It takes care of the pain and it doesn't make me woozy like the heavy duty stuff can.
    Hope this helps!
    Patty
  • cherie1202
    cherie1202 Member Posts: 6
    #4
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    Hi Cindy,
    I was diagnosed with BC in Dec.2002 and found out I had bone mets in Jan.2003..I was having alot of lower back pain..Thought I had hurt my back but it was mets..I have multiple spots to my ribs, pelvic area and legs..
    I had 6 treatments of Taxotere and A/C..I finished them in May, I started arimidex in June and zometa in August..I had scans done in Oct and Onc told me I was in remission!!!!Yeah!!! I have more scans done next month to see if I am still in remission.. I still have some pain, but not bad enough usually to take any pain meds...My onc told me I had to remember that my bones were damaged, so I would have some arithitic(sp?) pain...Usually most of my pain is in my lower back...

    God Bless,
    Cherie
  • cindyd1111
    cindyd1111 Member Posts: 9
    #5
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    jeancmici said:

    Cindy,

    Do I understand correctly- you were initially diagnosed with cancer five years ago. I had mets to bone diagnosed in August also - began injection monthly - then every three weeks of Zometa for the bones. Also have lung and liver mets. Did not have radio ablation YET ( in your liver?)as I am taking Navelbine. I don't know what the sodium phenylbuterate is.
    Your pain is probably coming from the bones - I take oxycodone every day - sometimes alone and sometimes as percocet which is oxycodone with tylenol. Mets are not curable but often go into remission for some time - that's what my oncologist has said - it is so individualized.

    I am not out of the woods yet but thought I'd write to you anyway to compare notes.

    Good Luck,
    Jean

    Hi Jean, Patty, Cherie Thanks for responding. Yes, I was diagnosed 5 years ago with a small tumor, then 3 years later had chest wall recurrence and now in this past Aug, discovered liver and sternum bone mets. They thought that was all so they put me on Lupron to induce menopause and did radioablation on liver. Had they done a pet scan they would have realized that I had a LOT of bone mets and they wouldn't have done the ablation ( which didn't really work anyway as my tumor appears to be growing back there) I know there is no cure and that is unacceptable to me as I have two young children... so I sought help at Dr. Burzynski's clinic in Texas... Sodium phenyl buterate ...supposed to help turn off the cancer gene so you stop generating new tumors... but I still have to get rid of what I have! So I'm on Xeloda 3x/day, everyday...no cyclical breaks... just straight through a few months till next scans anyway... Texas Dr's want me on Zometa too, but R.I. doctor says no, lets wait but I think I should get on it. Are there any side effects from Zometa? I have vein problems (as I'm sure we all do) from the chemos past. How is the Navelbine working for you? Am so excited to hear Cherie, that you are in remission! Thanks so much. Am interested in hearing back from all
  • bpcbrinks
    bpcbrinks Member Posts: 31
    #6
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    cindyd1111 said:

    Hi Jean, Patty, Cherie Thanks for responding. Yes, I was diagnosed 5 years ago with a small tumor, then 3 years later had chest wall recurrence and now in this past Aug, discovered liver and sternum bone mets. They thought that was all so they put me on Lupron to induce menopause and did radioablation on liver. Had they done a pet scan they would have realized that I had a LOT of bone mets and they wouldn't have done the ablation ( which didn't really work anyway as my tumor appears to be growing back there) I know there is no cure and that is unacceptable to me as I have two young children... so I sought help at Dr. Burzynski's clinic in Texas... Sodium phenyl buterate ...supposed to help turn off the cancer gene so you stop generating new tumors... but I still have to get rid of what I have! So I'm on Xeloda 3x/day, everyday...no cyclical breaks... just straight through a few months till next scans anyway... Texas Dr's want me on Zometa too, but R.I. doctor says no, lets wait but I think I should get on it. Are there any side effects from Zometa? I have vein problems (as I'm sure we all do) from the chemos past. How is the Navelbine working for you? Am so excited to hear Cherie, that you are in remission! Thanks so much. Am interested in hearing back from all

    Hey Cindy,
    The first couple of times I did Zometa, I had some bone pain. It went away the next day. After that, the days of my infusions I just get very worn out so I plan on taking a long bath and then going to bed early that night.

    I, too, have a little one -- he will be 5 in a couple of weeks. I know it is hard to be dealing with all of this when what you really want is just to be a normal mommy. I have bummed out days but then I kick myself and tell myself that I am here now and every day that I am here I am going to live my life to the fullest and enjoy it.

    I am convinced that if we hold on just long enough, someone will come up with maybe not a cure but a real treatment that will really work!!

    I will be praying for you!
    Patty

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