Any non hormone receptive cancer survivors out there?

mj2003
mj2003 Member Posts: 7
edited March 2014 in Breast Cancer #1
I am having a hard time finding anyone who has non hormone receptive bc. My story ... I was diagnosed with invasive bc (tumor size 2.4 cm, stage 2, grade 3) on 12.10.03 and had a double mastectomy with reconstruction on 12.23.03. I turned 35 years old on 12.24.03. My cancer was found by accident by my OB/GYN, as I was doing infertility testing and was scheduled to start Clo-med the next week. (I have one amazing son who just turned 4 in January.) My right expander fell 3 days after I got home from the hospital and I know have a breast coming out of the right side of my body and slowly moving toward my back. The good news about the expander falling is I was able to get a portacath put in - thank goodness! I had no lymph node involvement - another reason to be thankful. I am scheduled for 6 rounds of chemo (epirubicin, cytoxan and 5-FU). I have my second round this Thursday. I am currently taking part in a clinical trial using an osteoporosis drug not yet available in the U.S. It has been tested in Europe to prove that the recurrence of bc can be less by strengthening the bones with this drug. I wanted to up my odds any way I could. I want to be the fun grandma for my son's children. I would love to hear from anyone.

Comments

  • lindatn
    lindatn Member Posts: 229
    #2
    I have advanced osteoporous, what is the name of the drug you are using? I want to run it by the Dr here in Nashville. Best of luck. Linda
  • inkblot
    inkblot Member Posts: 698 Member
    #3
    Hi MJ:

    I was hormone negative. (Stage 1, 1cm solid tumor, lumpectomy w/Sentinel Node Dissection, 4 rounds AC, 37 rads) Was also Her2/neu positive. Many pre menopausal women who are hormone neg. seem to be Her/2neu pos.

    I will soon be 3 years from dx. Completed all tx
    10/01. Feeling good and good check ups since.

    For more details, you may read my page and/or feel free to email me here, anytime.

    Best wishes for a good outcome with your expander!

    Love, light and laughter,
    Ink
  • jeancmici
    jeancmici Member Posts: 665 Member
    #4
    Just a comment about the osteoporosis drug in your clinical trial. It is clodronate which has had good results in Europe and Canada. Perhaps the US dragged its feet on this one because it is an inexpensive drug. To be sure we are talking about the same drug, it is in pill form(?)

    Hummer and i discussed this in another thread on this forum.

    Good Luck with the grandma wish - it is very much possible.
    Jean
  • lynne40
    lynne40 Member Posts: 87
    #5
    Hi mj,
    I had non hormone receptive bc also. My tumor came out of nowhere. One day it was there. It was 1.8cm I had sentinol node removed. No cancer there or anywhere else. Tumor was grade 3 fast growing. I was lucky also. I had a lumpectomy and chemo. It has been 5 months since I finished chemo. I am feeling much better now. You are not alone there are alot of us out here. My sis had bc 10 years ago. Her tumor was the size of a speck and they did a mastectomy no chemo, no radiation nothing else(times have surely changed) she too had expanders and problems with them.But all turned out well and she is happy with the results of reconstruction. I send you good vibes and think positive about the grandma stuff. You can make it!!! Take care,
    Lynne
  • live42day
    live42day Member Posts: 64
    #6
    I'm another negative hormone receptive survivor. I had a mastectomy with 1 node involvement. Was stage IIB. Had 8 chemo treatments, but no rads. My last treatment was March 2002. All of my check ups have been good! There is no drug for me to take post chemo, so I do what we all do. Trust our Drs. and hope for the best. I had reconstruction with tissue expander one year after surgery. Everything went well with me. Sorry to hear you are having problems with expander. Hang in there, things do get better!
    Janet
  • ckbible
    ckbible Member Posts: 2
    #7
    Let me say hello. My breast cancer was hormone positive. I was diagnosed on Oct. 3, 1998. I also had to go through chemo and radiation. I tested positive for the protein HER2 whicn means my cancer was aggressive. I am taking tamoxifen and due to come off of it in April. At that time they are planning to switch me to Evista. You have a battle ahead of you and it isn't going to be fun, but it is a battle worth fighting. I wish you well and I will pray for you. I know that I am here because of answered prayer. May God be with you and your family.
  • mj2003
    mj2003 Member Posts: 7
    #8
    lindatn said:

    I have advanced osteoporous, what is the name of the drug you are using? I want to run it by the Dr here in Nashville. Best of luck. Linda

    LindaTN - the drug is called Disodium Clodronate - 800mg. Best of luck to you. Thanks for the reply!
  • mj2003
    mj2003 Member Posts: 7
    #9
    inkblot said:

    Hi MJ:

    I was hormone negative. (Stage 1, 1cm solid tumor, lumpectomy w/Sentinel Node Dissection, 4 rounds AC, 37 rads) Was also Her2/neu positive. Many pre menopausal women who are hormone neg. seem to be Her/2neu pos.

    I will soon be 3 years from dx. Completed all tx
    10/01. Feeling good and good check ups since.

    For more details, you may read my page and/or feel free to email me here, anytime.

    Best wishes for a good outcome with your expander!

    Love, light and laughter,
    Ink

    Inkblot - thanks for the reply. You sound great and give me hope.
  • mj2003
    mj2003 Member Posts: 7
    #10
    jeancmici said:

    Just a comment about the osteoporosis drug in your clinical trial. It is clodronate which has had good results in Europe and Canada. Perhaps the US dragged its feet on this one because it is an inexpensive drug. To be sure we are talking about the same drug, it is in pill form(?)

    Hummer and i discussed this in another thread on this forum.

    Good Luck with the grandma wish - it is very much possible.
    Jean

    Jeancmici - It is Disodium Clodronate - 800 mg and pill form - two pills each morning for the next three years, with water and on an empty stomach. I will look for your thread. Thanks for replying!
  • mj2003
    mj2003 Member Posts: 7
    #11
    lynne40 said:

    Hi mj,
    I had non hormone receptive bc also. My tumor came out of nowhere. One day it was there. It was 1.8cm I had sentinol node removed. No cancer there or anywhere else. Tumor was grade 3 fast growing. I was lucky also. I had a lumpectomy and chemo. It has been 5 months since I finished chemo. I am feeling much better now. You are not alone there are alot of us out here. My sis had bc 10 years ago. Her tumor was the size of a speck and they did a mastectomy no chemo, no radiation nothing else(times have surely changed) she too had expanders and problems with them.But all turned out well and she is happy with the results of reconstruction. I send you good vibes and think positive about the grandma stuff. You can make it!!! Take care,
    Lynne

    Lynne - Thank you for the reply. I was sure that there had to be more non hormone receptive survivors out there. Glad to hear you are doing well after chemo. My last treatment is May 6th - I am so looking forward to celebrating. Thank you for the good vibes. I too think the grandma wish is possible!
  • mj2003
    mj2003 Member Posts: 7
    #12
    live42day said:

    I'm another negative hormone receptive survivor. I had a mastectomy with 1 node involvement. Was stage IIB. Had 8 chemo treatments, but no rads. My last treatment was March 2002. All of my check ups have been good! There is no drug for me to take post chemo, so I do what we all do. Trust our Drs. and hope for the best. I had reconstruction with tissue expander one year after surgery. Everything went well with me. Sorry to hear you are having problems with expander. Hang in there, things do get better!
    Janet

    Janet - there is no drug to take post chemo for me either. Just curious - are you doing anything regarding alternative stuff like different vitamins, exercise, healing touch, yoga? I am looking into these currently. Thanks for replying, you also give me hope.
  • mj2003
    mj2003 Member Posts: 7
    #13
    ckbible said:

    Let me say hello. My breast cancer was hormone positive. I was diagnosed on Oct. 3, 1998. I also had to go through chemo and radiation. I tested positive for the protein HER2 whicn means my cancer was aggressive. I am taking tamoxifen and due to come off of it in April. At that time they are planning to switch me to Evista. You have a battle ahead of you and it isn't going to be fun, but it is a battle worth fighting. I wish you well and I will pray for you. I know that I am here because of answered prayer. May God be with you and your family.

    ckbible - thank you for your kind words. And thank you for praying for me and my family. I wish you luck with your switch in meds. May god be with you also.
  • lynne40
    lynne40 Member Posts: 87
    #14
    Hi MJ,
    Me again. I live where there is a cancer center that offers to cancer patients free of charge, massage, healing touch, reflexology and yoga. I am doing those things now 5 months after treatment. I wish I had gone sooner if it's offered to you. DoIT!!! It is wonderful, does it help? Who knows but it sure makes you feel great! For me the healing touch and reflexology have been great. My family even got me a gift certificate for reflexology for my birthday. Good Luck.Prayers to ya!
    Lynne
  • martyzl
    martyzl Member Posts: 196
    #15
    Hello MJ!
    My name is Marty, I am now 39...
    Here you have yet another hormone neg. bc survivor (2yrs and running)! May '02 Biopsy- 2.5cm, Invasive DCIS, extensive vascular invasion (wrapped up in blood vessels), Estrogen/ Progesterone (-), Her2Neu (3+). July '02 Mastectomy/immediate TramFlap reconstruction- Yet another tumour! 1.5cm and 3 of 22 lymph nodes positive, one of which had already turned into a 1cm tumour. *shrugs* Took a licking, kept on ticking!
    I had 6 hits of Epirubicin, 5FU & Cytoxan. Chose not to take radiation... saving it for a rainy day, don't ye' know??
    Used homeopathy, herbs, vitamins, Reiki and a wee bit of good attitude. *wink*
    To boot, after having Zoladex (to suspend my ovaries) implanted into my bum during all the chemo, then being told that my ovaries were finished up- (not even a spark!) my periods resumed 7 months after chemo & Zoladex stopped.
    Guess what I got for my birthday this month?? *waggling eyebrows*
    Pregnant! The fun never ends!!!
    Please, go take a look at my website in here under martyzl.
    If you need a shoulder, don't be shy! We get through this together!
    Marty zenhound@cac.net
  • martyzl
    martyzl Member Posts: 196
    #16
    Hello again MJ! Forgot to mention that Yoga is FABULOUS! Took it all thru' my chemo and never looked back! Go for it!
    ~Marty
  • ltsgo19
    ltsgo19 Member Posts: 1
    #17
    Hi: I'm also non-hormone receptive.
    Had a lumpectomy (2 out of 18 nodes were pos.
    ) followed by 6 sessions of chemo (adriamycin & taxotere) and then 35 rads.
    This month is 2 years since I finished my treatments. Had clear mammo and ultrasound since.

    Good luck to all.

    gm

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