breast to bone cancer

powermom
powermom Member Posts: 22
in Breast Cancer #1

Hi everyone, my daughter is 31 with breast mets to bone, on the last Pet-CT it showed multiple multiple lesions and mets all over the bones, also there are multiple different type of lesions etc... all over the skull. She has been on numerous chem meds, and now is on Halaven, how serious is it if it's in the skull? Does a/o know if it could be regresssed? This last Pet-Ct was so disapointing. Any info would be much appreciated.

 

Comments

  • camul
    camul Member Posts: 2,537
    #2
    my bone mets are extensive
    I was on Halevan at one point. Have had the mets for 4 years. My skull is full of mets, good thing is my brain is clear, as well as my organs.
    I am no longer getting chemo. I had it weekly other than breaks for scans for about 2/12 yrs. The bone mets kept growing. Now I am on Aromason. The prognosis? Who knows. My last onco saiid I needed to ac ept where I was at and start onhospi e. I changed onco's. Scans are never good with the bone mets, but I am happy that my organs are still clear.
    I dont thi k they k ow more. Each dr. has a different opinion. I just would like them to figure out something that works for the pain and exhaustion!

    Hugs,
    Carol
  • GlowMore
    GlowMore Member Posts: 789 Member
    #3
    camul said:

    my bone mets are extensive
    I was on Halevan at one point. Have had the mets for 4 years. My skull is full of mets, good thing is my brain is clear, as well as my organs.
    I am no longer getting chemo. I had it weekly other than breaks for scans for about 2/12 yrs. The bone mets kept growing. Now I am on Aromason. The prognosis? Who knows. My last onco saiid I needed to ac ept where I was at and start onhospi e. I changed onco's. Scans are never good with the bone mets, but I am happy that my organs are still clear.
    I dont thi k they k ow more. Each dr. has a different opinion. I just would like them to figure out something that works for the pain and exhaustion!

    Hugs,
    Carol

    Camul I love You

    Camul I love you...........because when an Onc did not suit me at the beginning...I just changed Oncs too  :)   You are WONDERFULL***

  • powermom
    powermom Member Posts: 22
    #4
    Hi guys, thx so much for takg

    Hi guys, thx so much for takg the time to post. I'm so sorry you Carol and GlowMore have to go thru this. it's terrifying. My daughter was on Aromasin already, actually in conjuction with Cytoxan, they say it's a miracle mix, BUT not for my daughter. And the Pet-CT is so devastating, the doc said it's serious, i did not press to ask what did she mean by that. I wonder what are the questions i should ask, i felt being that she just started on Halaven, i should give it some 3-4 wks and then ask...

    She is so young, has 2 young children, so much to do. She just moves on like a real trooper, but cannot and won't deal with the details. So i feel very responsible that i have to do my homework well, and make sure she is getting the best treatment. I can only hope that halaven is the right path at this point. We are in NYC, I just don't know if and when people go to all these big Centers. I'm always afraid i might be missing something. Can you understand?

    I cannot believe how bad it is at this point, and if stays for awhile longer only in the bones, is it deadly also? Or only when it gets to the organs? I've been trying to get reading material, but haven't gotten to one that specifies these issues. I feel i should know more.

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #5
    powermom said:

    Hi guys, thx so much for takg

    Hi guys, thx so much for takg the time to post. I'm so sorry you Carol and GlowMore have to go thru this. it's terrifying. My daughter was on Aromasin already, actually in conjuction with Cytoxan, they say it's a miracle mix, BUT not for my daughter. And the Pet-CT is so devastating, the doc said it's serious, i did not press to ask what did she mean by that. I wonder what are the questions i should ask, i felt being that she just started on Halaven, i should give it some 3-4 wks and then ask...

    She is so young, has 2 young children, so much to do. She just moves on like a real trooper, but cannot and won't deal with the details. So i feel very responsible that i have to do my homework well, and make sure she is getting the best treatment. I can only hope that halaven is the right path at this point. We are in NYC, I just don't know if and when people go to all these big Centers. I'm always afraid i might be missing something. Can you understand?

    I cannot believe how bad it is at this point, and if stays for awhile longer only in the bones, is it deadly also? Or only when it gets to the organs? I've been trying to get reading material, but haven't gotten to one that specifies these issues. I feel i should know more.

    So sorry to hear about your daughter

    so many questions-- I wish we had all the answers to your questions-- each and everyone is different - as each and every doctor follows clinicI'll data and trials .. Is there anyway your daughter will allow you to speak to her oncologist one on one - ??  HIPPA laws preven this I am sure, unless you get approval from your daughter-- 

     

    i wish, hope and pray for the very best outcome.

     

    vicki Sam

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #6
    VickiSam said:

    So sorry to hear about your daughter

    so many questions-- I wish we had all the answers to your questions-- each and everyone is different - as each and every doctor follows clinicI'll data and trials .. Is there anyway your daughter will allow you to speak to her oncologist one on one - ??  HIPPA laws preven this I am sure, unless you get approval from your daughter-- 

     

    i wish, hope and pray for the very best outcome.

     

    vicki Sam

    any updates ??

    Please check in when possible ...  We would appreciate an update when possible.

     

    Vicki Sam

  • GlowMore
    GlowMore Member Posts: 789 Member
    #7
    powermom said:

    Hi guys, thx so much for takg

    Hi guys, thx so much for takg the time to post. I'm so sorry you Carol and GlowMore have to go thru this. it's terrifying. My daughter was on Aromasin already, actually in conjuction with Cytoxan, they say it's a miracle mix, BUT not for my daughter. And the Pet-CT is so devastating, the doc said it's serious, i did not press to ask what did she mean by that. I wonder what are the questions i should ask, i felt being that she just started on Halaven, i should give it some 3-4 wks and then ask...

    She is so young, has 2 young children, so much to do. She just moves on like a real trooper, but cannot and won't deal with the details. So i feel very responsible that i have to do my homework well, and make sure she is getting the best treatment. I can only hope that halaven is the right path at this point. We are in NYC, I just don't know if and when people go to all these big Centers. I'm always afraid i might be missing something. Can you understand?

    I cannot believe how bad it is at this point, and if stays for awhile longer only in the bones, is it deadly also? Or only when it gets to the organs? I've been trying to get reading material, but haven't gotten to one that specifies these issues. I feel i should know more.

    You and your Daughter are in My Prayers PowerMom

    Know that it is so very hard to have this hit your Family.   Sending Prayers for Strength.    Knowledge is power...so do your best to read all you can and write down the questions you want answered when you go with your daughter to the Oncologist.   YOU are not responsible Mom for her having this dread disease....none of us know the reason for these things happening to us....please realize that you are doing the very best you can and we are all praying for you and for her.  Read some of what the other ladies have told you above again.  I believe in Miracles myself but whatever happens I hope and pray for you to have the stength you need to get thru it.      Please keep us informed.  

     

  • powermom
    powermom Member Posts: 22
    #8
    VickiSam said:

    So sorry to hear about your daughter

    so many questions-- I wish we had all the answers to your questions-- each and everyone is different - as each and every doctor follows clinicI'll data and trials .. Is there anyway your daughter will allow you to speak to her oncologist one on one - ??  HIPPA laws preven this I am sure, unless you get approval from your daughter-- 

     

    i wish, hope and pray for the very best outcome.

     

    vicki Sam

    Hi Vicki, thx for the support. re-ur question, i could spk to her onc, i met her back when this all started, and i have called her from time to time, she knows my daughter does not want to know the details. And this last time, when the results came back from the Pet i was there, she knows i'm on call. I was waitg very patiently for her to b able to get at least a 2nd round on the Halaven, which will be next wk, this wk she is going in for the Neupogen shots, (3x), and then on again w the chemo next wk. I am tryg to figure out how bad is havg the mets in the skull also, she has it just about everywhere right now, but what is the relation from skull to brain? That's worrisome.

    We are playg quite a masterful game in just movg on everyday, and dealg with it as if it would be a nuisance. I have been reading soem wonderful books, some insightful, some humorous, being that we pretty much kept it in the fam, it's interestg to read about it, for me at least, not everyone likes to do that. I cannot concentrate on a/t else. Oh, maybe The Housewives, yep, that's as much as i could handle :)

    Vicki, if you think of somtg good for me to ask the onc, then by all means, shoot away. thx!

     

  • powermom
    powermom Member Posts: 22
    #9
    GlowMore said:

    You and your Daughter are in My Prayers PowerMom

    Know that it is so very hard to have this hit your Family.   Sending Prayers for Strength.    Knowledge is power...so do your best to read all you can and write down the questions you want answered when you go with your daughter to the Oncologist.   YOU are not responsible Mom for her having this dread disease....none of us know the reason for these things happening to us....please realize that you are doing the very best you can and we are all praying for you and for her.  Read some of what the other ladies have told you above again.  I believe in Miracles myself but whatever happens I hope and pray for you to have the stength you need to get thru it.      Please keep us informed.  

     

    Glo, i was able to get you on a dif thread, and thx so much for ur prayers, always a welcome note. You know, she did the gene testg, nothg there. It's just crazy. But to the world BE AWARE,  her gyno refused to recommend a mamo when there was a lump there, bcs he insisted she was too young, (26), to have BC. YEP. IGNORANCE, is the worst enemy. I told my daughter where he shud go; we then paid out of pocket and went to a private radiologist, she gave one look at her, and said "screw" prescription, come on back, and the rest is history. Immediate biopsy and that wk she had a lumpectomy, and the roller coaster started. The docs were beside themselves. And reading materials, i see unfortunately this happens all the time. I will keep u posted, as i wrote on the other thread, she's going for the Neupogen shots this wk, and next wk Halaven again for 2 wks. Fingers crossed. Prayers on!

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #10
    powermom said:

    Glo, i was able to get you on a dif thread, and thx so much for ur prayers, always a welcome note. You know, she did the gene testg, nothg there. It's just crazy. But to the world BE AWARE,  her gyno refused to recommend a mamo when there was a lump there, bcs he insisted she was too young, (26), to have BC. YEP. IGNORANCE, is the worst enemy. I told my daughter where he shud go; we then paid out of pocket and went to a private radiologist, she gave one look at her, and said "screw" prescription, come on back, and the rest is history. Immediate biopsy and that wk she had a lumpectomy, and the roller coaster started. The docs were beside themselves. And reading materials, i see unfortunately this happens all the time. I will keep u posted, as i wrote on the other thread, she's going for the Neupogen shots this wk, and next wk Halaven again for 2 wks. Fingers crossed. Prayers on!

    powermom

    Please check in with us ..  when time permits ..

     

    Vicki Sam

  • mink321
    mink321 Member Posts: 1
    #11
    Never give up.

    Never give up.

  • powermom
    powermom Member Posts: 22
    #12
    Hi everyone, it's been

    Hi everyone, it's been extremely stressful aroung here. My daughter, Dani, is in pain, so the doc said that she does not think Halaven is helping, and ordered a bone biopsy. The biopsy was done yesterday, they did it from the hip, and took many samples to be sent to dif places for genetic whatever....Needless to say, the onc told me again she doesn't think it's good, and we should prob start looking at some big cancer centers...so i have been going a little crazy, and started my homework.  Dani, does not of this yet, and i could tell you that the put together young lady, is GONNA FREAK OUT!!!!!!!!, prob next wk will be the biggie, i really don't know. She kept her anger only at the monster till now, but she is very frustrated at this point. She still does not wanna talk about IT, so it makes it real hard, bcs than i look like a ****(sorry), when i approach any conv bt it. She wants me to do the research, but does not wanna know about it. Complicated.  

    If you have any experience with biopsies, i'm looking for any and all info i could get on the matter.

    thank you so much, everyone for your support and kind words.

  • New Flower
    New Flower Member Posts: 4,294
    #13
    powermom said:

    Hi everyone, it's been

    Hi everyone, it's been extremely stressful aroung here. My daughter, Dani, is in pain, so the doc said that she does not think Halaven is helping, and ordered a bone biopsy. The biopsy was done yesterday, they did it from the hip, and took many samples to be sent to dif places for genetic whatever....Needless to say, the onc told me again she doesn't think it's good, and we should prob start looking at some big cancer centers...so i have been going a little crazy, and started my homework.  Dani, does not of this yet, and i could tell you that the put together young lady, is GONNA FREAK OUT!!!!!!!!, prob next wk will be the biggie, i really don't know. She kept her anger only at the monster till now, but she is very frustrated at this point. She still does not wanna talk about IT, so it makes it real hard, bcs than i look like a ****(sorry), when i approach any conv bt it. She wants me to do the research, but does not wanna know about it. Complicated.  

    If you have any experience with biopsies, i'm looking for any and all info i could get on the matter.

    thank you so much, everyone for your support and kind words.

    Hi Mom, i am sorry

    I have had bone biopcy. It did confimed that it was metastasis from primary breast cancer, It also confirmed ER+ status. Obtaing Results will take up to 2 weeks, however it can be faster Any special gentic or molecular test can take up to 4 weeks.  Bone pain can also come from Chemo itself. Ther are other drugs to try, especially for ER+. Does your daughter gets anything for bone structure? I get Xgeva shots on monthly basis. Lets hope for improvement. When you get biopcy results back please seek a second opinion.

    Hugs  

  • powermom
    powermom Member Posts: 22
    #14
    New Flower said:

    Hi Mom, i am sorry

    I have had bone biopcy. It did confimed that it was metastasis from primary breast cancer, It also confirmed ER+ status. Obtaing Results will take up to 2 weeks, however it can be faster Any special gentic or molecular test can take up to 4 weeks.  Bone pain can also come from Chemo itself. Ther are other drugs to try, especially for ER+. Does your daughter gets anything for bone structure? I get Xgeva shots on monthly basis. Lets hope for improvement. When you get biopcy results back please seek a second opinion.

    Hugs  

    Thanks so much for your info.

    Thanks so much for your info. That's exactly what they are looking into. It's too bad we have to wait sooooo long for the results.Thanks to someone just like you in a different site, she pushed me to go and get started looking for a second opinion, so this is what we are doing now. It's a lot of favors, from a lot of ppl. But hopefully we'll get somewhere. And yes she is taking Xgeva, she doesnt complain but, she is not herself. When she finds out i'm looling into other options she will freak out, she wants me to do the homework, but she cannot deal with the reality. Neither can I. But, i have nowhere to run. How are you feeling? Which chemo are you on?  Did you go for another opinion? We are in NY, but we'll do whatever it takes...have a good nt

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