Bone Cancer Mets from Breast Cancer

smartinez200
smartinez200 Member Posts: 3
edited March 2014 in Breast Cancer #1
I was diagnosed with breast cancer 7 years ago and it has come back, mets to my bones. I have numerous spots on my ribs and a large tumor close to my spine at the back of my neck but they have slowed it down with radiation. I am taking a monthly hormone shot. My doctor said that people can live many years with bone metastasis. Just wondered if anyone out there has had similar reoccurances and their treatment. Thanks and God Bless....
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Comments

  • marines911
    marines911 Member Posts: 68
    Wife is going
    through the same thing. Her mets came back in her spine (T-9) and then a year later after the cyberknife it came back again in the T-9 above and below the original spot and now it is in her L1-L3 and in her ribs and clavical. We are awaiting word from UCLA to see if she qualifies for their clinical trial and hopefully it will shrink all the areas in her spleen, liver, and chest as well as the bones.

    Good luck and keep fighting.
  • Megan M
    Megan M Member Posts: 3,000
    Welcome smartinez200 and I
    Welcome smartinez200 and I am so sorry that you have bone mets. There are several on here with mets, Meena, bjmom and others that I hope will post for you.

    I am wishing you the best of luck and sending prayers.


    Hugs, Megan
  • meena1
    meena1 Member Posts: 1,003
    Megan M said:

    Welcome smartinez200 and I
    Welcome smartinez200 and I am so sorry that you have bone mets. There are several on here with mets, Meena, bjmom and others that I hope will post for you.

    I am wishing you the best of luck and sending prayers.


    Hugs, Megan

    I was diagnosed with breast
    I was diagnosed with breast cancer and bone mets in July 2008, I had chemo, and a masectomy and continued with Zometa (an infusion drug that strengthns your bones). I was stable for a while, but i was diagnosed with a reoccurance on June 2010 with mets to my spine, T-11 and my liver. I have had a lot of back pain and i am currently taking pain meds for that, i am not sure if i will be having radiation on my spine. You can live a very long time with bone mets, you have to be careful because your bones may fracture easier. Are you on a bone strengtning drug? Is that the hormone shot you get each month?
  • keep_on_going
    keep_on_going Member Posts: 21
    Bone Mets
    I was diagnosed with bone mets. 9 months after my original diagnosis. Several spots on my spine & ribs. That was over 4 years ago. I take Zometa IV every 3 weeks. I've had kyphoplasty to stabilize my spine. And I have had a couple courses of chemo when it appears the spots are growing. The pain sometimes is hard to control. But I wake up every day, work full time, have a great support group, and life is good. Best of luck to you
  • iowasignterp
    iowasignterp Member Posts: 55
    i have bone mets too
    i was originally diagnosed the first time five years ago, treated with chemo and herceptin. two months ago, I was diagnosed again but with mets to the bone (right hip and L2 vertebra). I am taking xeloda, with iv's of herceptin and zometa. i am er-/pr-, and obviously HER2+. your type of cancer does make a difference, i believe.

    I have heard from a few anecdotes that you can live a long time when it is just mets to the bone but once it gets into soft tissues, the prognosis gets much dimmer. people don't usually die of mets to the bone, only once it spreads to the liver, lungs, etc. right now, it seems that it is positive enough that they don't really have clinical trials if you have mets only to the bone. treatment options, yes, but not enough to invest much in new medical drugs and tests during that time. i have also heard that you can live for years with mets to the bones, but don't ask for any specifics.

    the big question for me, is how long can i survive with it just in my bones before it spreads elsewhere?? I don't know and I can't find any reliable info about that. doctors don't usually answer that question either. If you find good answers to that, please let me know. I am finding it aggravating. somebody has to be keeping track, somewhere.

    there are a few people on these boards that have lasted a long time with mets to the bone. I hope to be one of them but it has just been too recent for me. good luck.

    p.s. if you look much farther back, i started a thread about "stage IV, mets to the bone", and got several responses including some who have been around for a while post diagnosis.
  • iowasignterp
    iowasignterp Member Posts: 55

    Bone Mets
    I was diagnosed with bone mets. 9 months after my original diagnosis. Several spots on my spine & ribs. That was over 4 years ago. I take Zometa IV every 3 weeks. I've had kyphoplasty to stabilize my spine. And I have had a couple courses of chemo when it appears the spots are growing. The pain sometimes is hard to control. But I wake up every day, work full time, have a great support group, and life is good. Best of luck to you

    four years is good!!
    i like the hope of 4 years. someone posted it had been 13 years on a different thread. thanks for the hopeful answer. what are your markers??
  • Alexis F
    Alexis F Member Posts: 3,598

    Bone Mets
    I was diagnosed with bone mets. 9 months after my original diagnosis. Several spots on my spine & ribs. That was over 4 years ago. I take Zometa IV every 3 weeks. I've had kyphoplasty to stabilize my spine. And I have had a couple courses of chemo when it appears the spots are growing. The pain sometimes is hard to control. But I wake up every day, work full time, have a great support group, and life is good. Best of luck to you

    I don't have mets to the
    I don't have mets to the bone, but, want to wish all of you that do, all of the luck in the world and to let you know that I am praying for you. Keep fighting!
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    I was diagnosed with bone
    I was diagnosed with bone mets in April 2009. Hormone therapy has my markers almost normal and I am working and doing well. Just wanted to give you some hope as for some us, it may not be curable, but it is chronic and manageable.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member

    I was diagnosed with bone
    I was diagnosed with bone mets in April 2009. Hormone therapy has my markers almost normal and I am working and doing well. Just wanted to give you some hope as for some us, it may not be curable, but it is chronic and manageable.

    P.S.
    I also had rads and am on arimidex daily and zometa once a month.
  • sal314
    sal314 Member Posts: 599 Member
    I don't have bone mets, but
    I have several friends that do. One friend has been dealing with it for the past 6 years and is doing really well. Another friend has been living life with bone mets for the past 10 years. So...though I know it isn't easy, you still can have an enjoyable life! Keep a positive attitude and just make the most out of every day we're given. No one knows how long they have here on earth, whether they're fighting cancer or not. We all need to learn to live out our lives to the fullest each day!!

    I do have a queston for you though. When you were originally diagnosed, what stage were you? Did you have node involvement? If so, how many?...I'm 9 years out and though I don't "worry" on a daily bases about recurrance, when I hear stories like yours, I do get a little anxious! Blahhh...


    Blessings,
    Sally
  • keep_on_going
    keep_on_going Member Posts: 21

    i have bone mets too
    i was originally diagnosed the first time five years ago, treated with chemo and herceptin. two months ago, I was diagnosed again but with mets to the bone (right hip and L2 vertebra). I am taking xeloda, with iv's of herceptin and zometa. i am er-/pr-, and obviously HER2+. your type of cancer does make a difference, i believe.

    I have heard from a few anecdotes that you can live a long time when it is just mets to the bone but once it gets into soft tissues, the prognosis gets much dimmer. people don't usually die of mets to the bone, only once it spreads to the liver, lungs, etc. right now, it seems that it is positive enough that they don't really have clinical trials if you have mets only to the bone. treatment options, yes, but not enough to invest much in new medical drugs and tests during that time. i have also heard that you can live for years with mets to the bones, but don't ask for any specifics.

    the big question for me, is how long can i survive with it just in my bones before it spreads elsewhere?? I don't know and I can't find any reliable info about that. doctors don't usually answer that question either. If you find good answers to that, please let me know. I am finding it aggravating. somebody has to be keeping track, somewhere.

    there are a few people on these boards that have lasted a long time with mets to the bone. I hope to be one of them but it has just been too recent for me. good luck.

    p.s. if you look much farther back, i started a thread about "stage IV, mets to the bone", and got several responses including some who have been around for a while post diagnosis.

    we could be twins
    My story is the same ER/PR -, HER2+. I was diagnosed with mets. 9 months after my original diagnosis. That was in March 2006. Originally it was in T10,11,12 & L1,2. I also had a broken rib. After 4 years, I know have it in the right hip & shoulder blade, and a few more ribs. You're anecdotes are true as far as I know...bone only is the best (? when it's u it's the worst!) My doc won't give me the answer. If I find one somewhere I'll certainly share
  • Angie2U
    Angie2U Member Posts: 2,991

    P.S.
    I also had rads and am on arimidex daily and zometa once a month.

    Sending prayers and big hugs
    Sending prayers and big hugs to you!


    Hugs,

    Angie
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    meena1 said:

    I was diagnosed with breast
    I was diagnosed with breast cancer and bone mets in July 2008, I had chemo, and a masectomy and continued with Zometa (an infusion drug that strengthns your bones). I was stable for a while, but i was diagnosed with a reoccurance on June 2010 with mets to my spine, T-11 and my liver. I have had a lot of back pain and i am currently taking pain meds for that, i am not sure if i will be having radiation on my spine. You can live a very long time with bone mets, you have to be careful because your bones may fracture easier. Are you on a bone strengtning drug? Is that the hormone shot you get each month?

    I'm so sorry that this
    I'm so sorry that this happened to you. I will keep you in my thoughts and prayers.

    Hugs, Jan
  • cookie97
    cookie97 Member Posts: 200
    I have bone mets as well..
    Yeah me too :( i was dxd in May of this year with mets to bone from get go. I have just completed my 7th round of Taxotere/Cytoxin along with Zometa. My last PET showed all clear except for one spot remaining on my left Illiac originally dxd with T11, T12, L4, L5 both femurs, pelvis, and both illiac. Meds are doing pretty well at keeping everything at bay. I am supposed to have 2 more treatments then another PET hopefully all will be clear at that time.
    The fear is somewhat daunting to say the least. I remember saying to the onc. "Oh in bone. Isn't that better than the liver or lungs?" Almost like it was good news. Crazy me! Guess we hold on to whatever thread of hope that is out there?
    I don't have any pain, but onc said that if I did they could use rads to alleviate that.
    Good luck to you and don't let it get you down.

    Peace and Love,
    Edie
  • jnl
    jnl Member Posts: 3,869 Member
    sal314 said:

    I don't have bone mets, but
    I have several friends that do. One friend has been dealing with it for the past 6 years and is doing really well. Another friend has been living life with bone mets for the past 10 years. So...though I know it isn't easy, you still can have an enjoyable life! Keep a positive attitude and just make the most out of every day we're given. No one knows how long they have here on earth, whether they're fighting cancer or not. We all need to learn to live out our lives to the fullest each day!!

    I do have a queston for you though. When you were originally diagnosed, what stage were you? Did you have node involvement? If so, how many?...I'm 9 years out and though I don't "worry" on a daily bases about recurrance, when I hear stories like yours, I do get a little anxious! Blahhh...


    Blessings,
    Sally

    Praying for you!
    Hugs, Leeza

    Praying for you!


    Hugs, Leeza
  • Kylez
    Kylez Member Posts: 3,761 Member
    cookie97 said:

    I have bone mets as well..
    Yeah me too :( i was dxd in May of this year with mets to bone from get go. I have just completed my 7th round of Taxotere/Cytoxin along with Zometa. My last PET showed all clear except for one spot remaining on my left Illiac originally dxd with T11, T12, L4, L5 both femurs, pelvis, and both illiac. Meds are doing pretty well at keeping everything at bay. I am supposed to have 2 more treatments then another PET hopefully all will be clear at that time.
    The fear is somewhat daunting to say the least. I remember saying to the onc. "Oh in bone. Isn't that better than the liver or lungs?" Almost like it was good news. Crazy me! Guess we hold on to whatever thread of hope that is out there?
    I don't have any pain, but onc said that if I did they could use rads to alleviate that.
    Good luck to you and don't let it get you down.

    Peace and Love,
    Edie

    Praying for you and hoping
    Praying for you and hoping your treatments will help you. We are all here for you anytime you might need us.

    Hugs, Kylez
  • Ritzy
    Ritzy Member Posts: 4,381 Member

    Bone Mets
    I was diagnosed with bone mets. 9 months after my original diagnosis. Several spots on my spine & ribs. That was over 4 years ago. I take Zometa IV every 3 weeks. I've had kyphoplasty to stabilize my spine. And I have had a couple courses of chemo when it appears the spots are growing. The pain sometimes is hard to control. But I wake up every day, work full time, have a great support group, and life is good. Best of luck to you

    All of you with bone mets
    All of you with bone mets are amazingly brave and wonderful sisters! I wish each and every one of you the best of luck that is possible.


    Sue :)
  • iowasignterp
    iowasignterp Member Posts: 55

    we could be twins
    My story is the same ER/PR -, HER2+. I was diagnosed with mets. 9 months after my original diagnosis. That was in March 2006. Originally it was in T10,11,12 & L1,2. I also had a broken rib. After 4 years, I know have it in the right hip & shoulder blade, and a few more ribs. You're anecdotes are true as far as I know...bone only is the best (? when it's u it's the worst!) My doc won't give me the answer. If I find one somewhere I'll certainly share

    "bone only is best... in a way it is"
    It is a sad thing when we compare our cases to others but each person needs to have their hopeful best as much as they can. I am hanging onto any hope I can so that I can get my boys out of high school (year 2017) and college I took a long time getting my head wrapped around the word "incurable". It is a tough thing but now that I can't change anything but I will grasp onto the hope that I have heard enough anecdotes to know that if it is only in the bone, it is not great but tolerable and manageable with a few rounds of chemo. Not exactly exciting but it is better than the much worse diagnosis. I still admire our warriors that are battling that tougher battle because I know it is likely to become my battle sometime in the future. However, I am ready to keep that battle at bay as long as I can for now.

    The doctors and other patients keep telling me that it is not unlikely that I could live for a very long time with it contained to my bones. However, I would think someone should be keeping track as to how long this process could take. Even if I were to get a very, very broad range, I would feel a little better. It seems that once it spreads to the organs, prognosis is closer to three years for the current treatments. I am sure that is not completely accurate and there are exceptions to everything, of course. So if I can get a general range that people live anywhere from 1 to 10 years (???????????)in bone only, then I have another three years dealing with the spread. So maybe, I have 4 to 14 years. Then again, maybe 20 years is more likely. I would like having some type of medical literature though telling me that there is some documentation about how long it can stay just in the bone. I know that treatments are changing and improving frequently but I want to know when to celebrate each baseline or goal line. Incurable sounds pretty bad in most people's minds, including my own at first.
  • Megan M
    Megan M Member Posts: 3,000
    meena1 said:

    I was diagnosed with breast
    I was diagnosed with breast cancer and bone mets in July 2008, I had chemo, and a masectomy and continued with Zometa (an infusion drug that strengthns your bones). I was stable for a while, but i was diagnosed with a reoccurance on June 2010 with mets to my spine, T-11 and my liver. I have had a lot of back pain and i am currently taking pain meds for that, i am not sure if i will be having radiation on my spine. You can live a very long time with bone mets, you have to be careful because your bones may fracture easier. Are you on a bone strengtning drug? Is that the hormone shot you get each month?

    How are you doing now Meena?
    How are you doing now Meena? I don't think I have seen a recent post.
  • keep_on_going
    keep_on_going Member Posts: 21

    "bone only is best... in a way it is"
    It is a sad thing when we compare our cases to others but each person needs to have their hopeful best as much as they can. I am hanging onto any hope I can so that I can get my boys out of high school (year 2017) and college I took a long time getting my head wrapped around the word "incurable". It is a tough thing but now that I can't change anything but I will grasp onto the hope that I have heard enough anecdotes to know that if it is only in the bone, it is not great but tolerable and manageable with a few rounds of chemo. Not exactly exciting but it is better than the much worse diagnosis. I still admire our warriors that are battling that tougher battle because I know it is likely to become my battle sometime in the future. However, I am ready to keep that battle at bay as long as I can for now.

    The doctors and other patients keep telling me that it is not unlikely that I could live for a very long time with it contained to my bones. However, I would think someone should be keeping track as to how long this process could take. Even if I were to get a very, very broad range, I would feel a little better. It seems that once it spreads to the organs, prognosis is closer to three years for the current treatments. I am sure that is not completely accurate and there are exceptions to everything, of course. So if I can get a general range that people live anywhere from 1 to 10 years (???????????)in bone only, then I have another three years dealing with the spread. So maybe, I have 4 to 14 years. Then again, maybe 20 years is more likely. I would like having some type of medical literature though telling me that there is some documentation about how long it can stay just in the bone. I know that treatments are changing and improving frequently but I want to know when to celebrate each baseline or goal line. Incurable sounds pretty bad in most people's minds, including my own at first.

    I hope you find your answer
    I have trouble when people ask if I'm a survivor. Yes, I am surviving..but not like I'm disease free or cured. And that is what they perceive a survivor to be. I go every 3 weeks for my Herceptin. I had to stop the Zometa because I developed of osteonecrosis of the jaw. Every scan and blood draw is just like when I was waiting for the first biopsy results It has become a chronic condition..like diabetes..no cure but some great treatments..and new things coming every day.
    Over time I have learned to celebrate each day I can get out of bed, manage my pain, and make someone smile