Any1 her2nue+ with met breast cancer

Etta
Etta Member Posts: 5
edited March 2014 in Breast Cancer #1
Hello to all u wonderful people who r so strong. I'm looking for any1 that can share some experiences that they r going through that is Her2nue positive with met. breast cancer. I am a year into my Kemo's and will be until which Im wishing for a miracle. But I would really like to see if there is anything else out there that I can try, that the Doctors haven't already. Please let me know I would really appreciate it. Thank you again

Comments

  • jmears
    jmears Member Posts: 266
    Etta
    I'm afraid I haven't experienced everything yet but I am in a similar situation. I was DX in 2000 stage II strong estrogen, strong her2/neu. I did lumpectomy, chemo and radiation. Thought I was done. Last month my blood tumor markers started to bounce and last week after many, many test I was informed the cancer had returned to my spine. I have no pain or symptoms so for now I'm not on radiation or chemo. I was switched from Tamoxifen to Femara and am getting a bone builder called Zometa. Because I am so estrogen positive my DR is trying to starve the cancer. I'm afraid to ask the doctor questions because I'm afraid of the answers. What chemo are you on? I have heard that Herceptin is good for Her2/nue positive pathology. My heart goes out to you. If you want to email me directly please do ... I live in Maryland ...maybe we can support each other through this. My email is [email protected].
  • JKAlley
    JKAlley Member Posts: 84
    jmears said:

    Etta
    I'm afraid I haven't experienced everything yet but I am in a similar situation. I was DX in 2000 stage II strong estrogen, strong her2/neu. I did lumpectomy, chemo and radiation. Thought I was done. Last month my blood tumor markers started to bounce and last week after many, many test I was informed the cancer had returned to my spine. I have no pain or symptoms so for now I'm not on radiation or chemo. I was switched from Tamoxifen to Femara and am getting a bone builder called Zometa. Because I am so estrogen positive my DR is trying to starve the cancer. I'm afraid to ask the doctor questions because I'm afraid of the answers. What chemo are you on? I have heard that Herceptin is good for Her2/nue positive pathology. My heart goes out to you. If you want to email me directly please do ... I live in Maryland ...maybe we can support each other through this. My email is [email protected].

    Herceptin is doing some good work with us her2 ladies, ask your dr. about it.
  • awjkej
    awjkej Member Posts: 3
    Hi,
    I currently am being treated for bone mets in my spine and my left hip. (I was originally diagnosed in Jan'03, am ER/PR+ and Her2+++, I had a bilateral mastectomy, 6 rounds of A/C and then on tamoxifen). Currently I have weekly Herceptin treatments to deal with the HER2 gene, monthly Zometa for the bones, and Zolodex (which stops the production of estrogen) every 3 months. I switched from Tamoxifen to Arimidex when bone mets was diagnosed.

    My onc originally wanted me to do chemo when the bone mets occurred, but I had a second opinion at UCSF-Carol Franc Buck Breast Cancer Center, and third opinion at UCLA. Both of those docs said to try Herceptin alone without chemo for as long as I can. And when the Herceptin stops working, then I do chemo. After 5 months of treatments since rediagnosis, my lesion on my spine shows no cancer activity, and my tumor marker blood tests are low. I will have another PET scan in 2 weeks to see how things are developing. (I have been getting either a CT Scan with contrast or PET Scan once a month for the last 5 months; also echocardiograms to monitor the heart).

    Along with the treatment regime above, I have changed my lifestyle somewhat by scaling back, getting extra help around the house (I am 44 with wonderful husband and 3 very active boys), tweaked my diet (it has always been healthy, but I have now cut out most sugars, added wheat grass shots, no alcohol except special occasions, no caffene, and fairly balanced diet), and have a balanced exercise routine(walking, bicycling, swimming and weight routine).

    I don't know if this helps. I would get as much information as you can, even if that includes second and third opinions. Your insurance should cover at least a second opinion. Hang in there. There are many "miracles" happening every day. I also wanted to give you another site which I have found very helpful www.breastcancer.org.

    God bless.

    Anne
  • Roxi1
    Roxi1 Member Posts: 39
    For a wonderful site for women who are Her-2/Neu + click on the following:
    Click here: HER2 Support Group http://www.her2support.org/
  • SusanAnne
    SusanAnne Member Posts: 245
    I second that opinion for the HER2support.org
    Lots of solid information there for us. The news last week about herceptin was BIG. I am thankful I was a part of the trials. Good luck to you.

    Susan
  • CindyPR
    CindyPR Member Posts: 36
    Hi,

    Be strong, as what everyone saids is correct. Have gone through the chemo, and ratio. Thank goodness three years ago in October. Yes get second advice, as did not have that chance in Puerto Rico, as hubby is in the military, but read, everything about the problem, as the site is great, and we are here. Any questions, ask. We are here to help.
    CindyPR
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    CindyPR said:

    Hi,

    Be strong, as what everyone saids is correct. Have gone through the chemo, and ratio. Thank goodness three years ago in October. Yes get second advice, as did not have that chance in Puerto Rico, as hubby is in the military, but read, everything about the problem, as the site is great, and we are here. Any questions, ask. We are here to help.
    CindyPR

    Hi there!
    I'm another survivor ER/PR+ w/ HER2neu diagnosed 6/2000 treated w/ AC/taxol and radiation to breast w/ lumpectomy. Had bone mets 8/2001 started on Herceptin took it till 5/2004. Tumor markers had consistently been on the rise so I stopped Herceptin to "see" where the microscopic little buggers were. Six months later developed mets to lung, liver, kidney! Hey, I wanted to know where it was, and I found out!
    Started carboplatinum/taxotere resumed herceptin and zometa and as of 2/2005 lungs, liver and kidney are clear. Glory be to God!
    Herceptin is great, but along with it goes diet, exercise, stress reduction, and for me strong faith in God.
    Sugar feeds cancer, oxygen kills it, so get into habit of oxygenating the body thru exercise and wheat grass. Cancer grows in an acid state so eat foods that alkalinize the body. Get plenty of rest and don't let this stuff scare you. It can be beaten!
    God bless.
    hummingbyrd
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    JKAlley said:

    Herceptin is doing some good work with us her2 ladies, ask your dr. about it.

    6 months after being told that she was a "survivor" and all clear (it had been 5 years since her mastectomy and treatment), my very dear friend started coughing and now she has found out that the cancer has metastacized into her lungs, liver, bones and brain. She is starting radiation on Tuesday (for the brain lesions) and Herceptin plus two other drugs (It hink carboplatin and something with a "T") on Wednesday. I am trying to help her research this because she does not have the energy. She has two small children. If there is any information you can share about what we should do to be sure she is getting the best possible treatment I would so appreciate it. Beth is currently in treatment at Moffitt, but we'll go elsewhere if that is what needs to happen. Thanks so much!