Bone Cancer Mets from Breast Cancer
Comments
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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.0 -
I was diagnosed with breastMegan 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 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?0 -
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 you0 -
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.0 -
four years is good!!keep_on_going said: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 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??0 -
I don't have mets to thekeep_on_going said: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 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!0 -
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.0 -
P.S.CypressCynthia said: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.
I also had rads and am on arimidex daily and zometa once a month.0 -
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,
Sally0 -
we could be twinsiowasignterp said: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.
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 share0 -
Sending prayers and big hugsCypressCynthia said:P.S.
I also had rads and am on arimidex daily and zometa once a month.
Sending prayers and big hugs to you!
Hugs,
Angie0 -
I'm so sorry that thismeena1 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 happened to you. I will keep you in my thoughts and prayers.
Hugs, Jan0 -
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,
Edie0 -
Praying for you!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
Hugs, Leeza
Praying for you!
Hugs, Leeza0 -
Praying for you and hopingcookie97 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 your treatments will help you. We are all here for you anytime you might need us.
Hugs, Kylez0 -
All of you with bone metskeep_on_going said: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 are amazingly brave and wonderful sisters! I wish each and every one of you the best of luck that is possible.
Sue
0 -
"bone only is best... in a way it is"keep_on_going said: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
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.0 -
How are you doing now Meena?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? I don't think I have seen a recent post.0 -
I hope you find your answeriowasignterp said:"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 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 smile0
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