breast cancer spread to bones

jenramos
jenramos Member Posts: 5
edited March 2014 in Breast Cancer #1
i found out about 4 months ago that my breast cancer has metastisized to my bones. I guess I am looking to someone else who has been here and has found a treatment that has contained the cancer from spreading.

Comments

  • Ellison
    Ellison Member Posts: 68
    Hi,

    I too just found out in Oct/04 mine has spread to my pelvic area. It is stage 4. I was taken off Tomoxafin and now on Femera. I go back for a scan in May. That will tell if this is working for me or not.

    What treatment are you doing at this time.

    Ellison
  • jenramos
    jenramos Member Posts: 5
    Ellison said:

    Hi,

    I too just found out in Oct/04 mine has spread to my pelvic area. It is stage 4. I was taken off Tomoxafin and now on Femera. I go back for a scan in May. That will tell if this is working for me or not.

    What treatment are you doing at this time.

    Ellison

    Hello!
    I was on gemzar and taxol, but that wasn't working, now I am on Xeloda. I tolerate this well, I just hope it is working. I also found out in Oct/04 of the spread. It started in my left hip, and now has spread to my pelvic area and some ribs. I haven't told my children about the advance yet. Do you have children?
  • Ellison
    Ellison Member Posts: 68
    jenramos said:

    Hello!
    I was on gemzar and taxol, but that wasn't working, now I am on Xeloda. I tolerate this well, I just hope it is working. I also found out in Oct/04 of the spread. It started in my left hip, and now has spread to my pelvic area and some ribs. I haven't told my children about the advance yet. Do you have children?

    Hi, Yes I do have three children all grown. I have 3 grandchildren also. For me the hardest thing was seeing my husband go thru this again only to be told I have 2 to 5 years. It was such a shock for us and my daughter just screamed and said she would not claim it. We are all doing much better. I am in the process of getting my affairs in order so I can go and enjoy my life.

    Do you have a lot of pain. The way we found this was I was having pain in my hip so bad I could hardly stand it. The scans shows arthritus in the hip. My oncologist ran more test. They were looking for it in the brain pelvic and spine. So far only in the pelvic. I will know if the cancer has spread in may. Hopefully the femera has given me a remission. I have not had any severe pain in two weeks :) It makes me think the Femera is working. When I am not in pain, I don't dwell on having cancer. I was also feeling so darn tired. I have a little more energy also. I really am greatful for every good day I have.
  • EllenM6246
    EllenM6246 Member Posts: 27
    I also have bone cancer metasteses. I was originally treated with Zometa and Faslodex but that did not work. After a year I was switched to Navelbine and herceptin. I feel good, tumor markers are normal and I have just a few residual side effects. For a while I had pretty bad bone pain, that has gone away. I still get monthly zometa and my scans showed new bone growth. I am ER/PR + and Her2Neu +++. Good luck, Ellen
  • jenramos
    jenramos Member Posts: 5

    I also have bone cancer metasteses. I was originally treated with Zometa and Faslodex but that did not work. After a year I was switched to Navelbine and herceptin. I feel good, tumor markers are normal and I have just a few residual side effects. For a while I had pretty bad bone pain, that has gone away. I still get monthly zometa and my scans showed new bone growth. I am ER/PR + and Her2Neu +++. Good luck, Ellen

    I think I am still in disbelief that this is happening to me, but it is nice to hear others staying so positive. I am still hoping we can find something that gives me atleast 5 years! My girls are 7 and 8. I want them to be as old as possible. Has anyone thought about bone marrow transplant? We recently moved to be near my sister, so I am switching doctors, I am anxious to see if he/she will have a different plan of attack. I too had TERRIBLE hip pain for a while, but radiation helped that. I still have a little discomfort in my hip, and my ribs, but nothing I can't live with. I have a whole new focus on life now, I just worry about my girls and husband. Thanks for the encouragment!!
    Jennifer
  • Idalia
    Idalia Member Posts: 76
    jenramos said:

    I think I am still in disbelief that this is happening to me, but it is nice to hear others staying so positive. I am still hoping we can find something that gives me atleast 5 years! My girls are 7 and 8. I want them to be as old as possible. Has anyone thought about bone marrow transplant? We recently moved to be near my sister, so I am switching doctors, I am anxious to see if he/she will have a different plan of attack. I too had TERRIBLE hip pain for a while, but radiation helped that. I still have a little discomfort in my hip, and my ribs, but nothing I can't live with. I have a whole new focus on life now, I just worry about my girls and husband. Thanks for the encouragment!!
    Jennifer

    Not sure if bone marrow transplant would do any good. Breast cancer isn't a form of blood cancer, though an immune system that could identify and kill cancer cells would cure it! For me, finding out about the bone mets was a blow and it broke my heart. Months later, there are still good days and bad days. I asked my orthopedist, who told me my cancer was back, if I would die. He said we are all dying. Trite, yeah, but true. At least we have time to focus on what really matters. Cancer does set our priorities straight! And they are working on new treatments all the time. If we can just hang in there long enough, I know there will be a treatment that works for each of us!
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    Ellison said:

    Hi, Yes I do have three children all grown. I have 3 grandchildren also. For me the hardest thing was seeing my husband go thru this again only to be told I have 2 to 5 years. It was such a shock for us and my daughter just screamed and said she would not claim it. We are all doing much better. I am in the process of getting my affairs in order so I can go and enjoy my life.

    Do you have a lot of pain. The way we found this was I was having pain in my hip so bad I could hardly stand it. The scans shows arthritus in the hip. My oncologist ran more test. They were looking for it in the brain pelvic and spine. So far only in the pelvic. I will know if the cancer has spread in may. Hopefully the femera has given me a remission. I have not had any severe pain in two weeks :) It makes me think the Femera is working. When I am not in pain, I don't dwell on having cancer. I was also feeling so darn tired. I have a little more energy also. I really am greatful for every good day I have.

    I don't think it is at all helpful for people to give a specific time frame. With all the new treatments being developed, who knows what tomorrow holds? I was diagnosed with metastasis to the bone and peritoneal cavity in December, so I share the uncertain ground, but am doing very nicely now.
  • jenramos
    jenramos Member Posts: 5
    Idalia said:

    Not sure if bone marrow transplant would do any good. Breast cancer isn't a form of blood cancer, though an immune system that could identify and kill cancer cells would cure it! For me, finding out about the bone mets was a blow and it broke my heart. Months later, there are still good days and bad days. I asked my orthopedist, who told me my cancer was back, if I would die. He said we are all dying. Trite, yeah, but true. At least we have time to focus on what really matters. Cancer does set our priorities straight! And they are working on new treatments all the time. If we can just hang in there long enough, I know there will be a treatment that works for each of us!

    A cure is what I am hoping for! I have always believed that my positive attitude is what has helped my through these last 3 years. Sure, I get tired and upset at times, you know, those times you feel like you can FEEL the cancer in your body. We all have our bad days, my husband is wonderful and my girls know when I don't feel well.
    I never realized how good it would feel connecting with others in my shoes! Thanks to all!
    Jennifer
  • Judeedee
    Judeedee Member Posts: 2
    I too just found out in February that what at first appeared to be a small 8mm tumer that could be handled with a lumpectomy had spread to my bones and liver. I am now on Letrozole and another drug (or placebo) in a doulble blind study, to see if the two together work better than the Letrozole alone. What really shocked me is that a person could feel perfectly fine and have all this going on inside them. I do count it as a blessing that I am not in pain. I will have another bone scan the end of April. Hopefully it will be good news that something is working and the cancers are shrinking.
  • carcov
    carcov Member Posts: 2
    jenramos said:

    Hello!
    I was on gemzar and taxol, but that wasn't working, now I am on Xeloda. I tolerate this well, I just hope it is working. I also found out in Oct/04 of the spread. It started in my left hip, and now has spread to my pelvic area and some ribs. I haven't told my children about the advance yet. Do you have children?

    Hello,
    I was reading your story and wonder what dose of Xeloda you are taking and how long have you been on the drug? Also If you've had a ct scan please share the progress.
  • dcothran
    dcothran Member Posts: 1
    Metastasized Breast Cancer

    I am a newbie to this group as of today.  Last week I found out that my breast cancer (which mammo's have been great for 3 years) is now in my bones  I had a PET scan and it shows I have it in most of my bones.  To say the least I am in total shock.  I had my first Chemo treatment last week.  I only had radiation with my first diagnosed breast cancer.

    Any information, suggestions,etc will be greatly appreciated.  I am retired and have lots of life left in me.  I have laid in all in God's hands.

  • camul
    camul Member Posts: 2,537
    dcothran said:

    Metastasized Breast Cancer

    I am a newbie to this group as of today.  Last week I found out that my breast cancer (which mammo's have been great for 3 years) is now in my bones  I had a PET scan and it shows I have it in most of my bones.  To say the least I am in total shock.  I had my first Chemo treatment last week.  I only had radiation with my first diagnosed breast cancer.

    Any information, suggestions,etc will be greatly appreciated.  I am retired and have lots of life left in me.  I have laid in all in God's hands.

    i have it in most all of my bones.

    it w ll be 6years in August.  i origionally was dx'd in 1/2002, however, i found the lump in Sept. 2001.

    in 2010, i was given 3 - 6 months.  3 w/o tx, and 6 with.  I had all scans in Nov 2009, and all bloodwork in 5/2010.  All was.clear. I had 2 1/2 years of chemo, weekly, radiation 8 different times, between 14 days and 25 days each.  I just had a pain pump put in 3 weeks ago, had I known how much better the pain is, i would have had one 5years ago.  

    Chemo cleared up the tumors in my liver and skin, however, nothing has stopped the growth in my bones.  i have been on 5 different chemo`s, femara (which was awful), finally, I was on Exemestane which dropped my tumor markers, it worked to slow the growth for 19 months, but stopped last August.  i am still on it. i stopped it for a short time and the tumor markers showed the growth to be too agressive.  i went back on it and it is still agressive, but about 50+ points a month, rather than 75 - 100.  

    i may try another targeted med, but not for a couple of weeks.  Told him i will try it when the incisions from the pain pump are not as painful.  I am hesitant as side effects are extremely low white counts, hair loss, and blood clots.  i have had the clots and pe from the last chemo.  Hair not a problem, but had so many UTI's on chemo that i was on Cipro every few weeks.  Have only had 1 UTI in 2+ years of no chemo, and want quality along with extending my time.  

    I honestly sleep most days, do everything I can when I feel g ood, but know an active day will wipe me out for 3 days.  Part of the extreme fatigue is the fentanyl patches, along with the fentanyl in the pump.  Thr patches alone were not effective on controlling the pain.  Now I feel alive again, i will take the sleepiness if it means I can function part of the time.

    Overal l, I feel blessed.  Dont let anyone give you a time line.  

    Hugs,

    Carol

  • tufi000
    tufi000 Member Posts: 745 Member
    Oh Happy Day!

    Ninja sooo happy to see this post!! It has made my day, week, month along with renewing my guilt of not being productive in relatively decent circumstances.

    This is such a wonderful post from you!  THANK YOU!

    Sherry