• Reoccurence

    Asked by Daylyn on Monday, October 8, 2018

    Reoccurence

    Does anyone know the “usual” treatment for reoccurence of TNBC. I completed neoadjuvant chemo ACT, surgery and radiation the first time. Thanks

    14 Answers from the Community

    14 answers
    • MLT's Avatar
      MLT

      I had Taxotere and cytoxin, lumpectomy, radiation the 1st time. My recurrence is metastatic, so the approach is remission.
      I get 1/3 dose of adriamycin every week. That will change soon since I will reach the maximum dose of this chemo. Wishing you the best. Fight, fight, fight!

      about 1 year ago
    • fiddler's Avatar
      fiddler

      Yikes!!!! Much TNBC research is going on right now, but that doesn't help you today. Vanderbilt U found two types - one comes back and one doesn't, and they found that one of the types may be uterine cancer that settled in the breast.

      I had TNBC 5.5 years ago and went through the same protocol as you. I was told by my onco doc that it comes back elsewhere - lungs, brain, etc. - but not in the same breast, and when it comes back it's Stage IV, which is supposedly untreatable.

      "They" don't know what TNBC is, so they don't know how to treat it, except to throw the kitchen sink at it the first time and cross their fingers that they got all the cancer cells that escaped the breast.

      So, to answer your question, I was told there is no treatment.

      They may throw stuff at you again, but ask for data, ask them to SHOW you the effectiveness with research, but remember, anything can be said with statistics. If they show you studies, look at the size of the study, when it happened, how long they followed subjects, and so on. The reason I say this is, why get sick again with carcinogenic chemicals when you can have quality of life.

      Good luck and please report back what you find out. I need to know what they do now in case TNBC comes back in me.

      about 1 year ago
    • MLT's Avatar
      MLT

      Ask about genetic testing and find out if you have a high androgen level. Anti androgen meds will probably be my next choice. My androgen level is 90%.

      about 1 year ago
    • Daylyn's Avatar
      Daylyn

      Thank you for your answers. I plan to request the testing. I have oft thought I might have high androgen levels and probably high cortisone stress levels as I have always been an apple shape. Since post menopause estrogen is produced by fat, which I now have plenty of I was very surprised I didn’t have estrogen positive disease. I did not have mutated BRCA genetically. Nor did any of my Onc genetic testing come back as a recognized mutation. Despite that as the oldest of six I had one sib die of peripheral nerve sheath sarcoma, one of colon cancer, the others are still alive, but another one with tnbc one with HCC and one with NSCLC.
      So I would really like to know the best ways to deal with this. Again thank you all.

      about 1 year ago
    • fiddler's Avatar
      fiddler

      MLT: did you have TNBC?

      Daylyn & MLT: Thanks for the lead on androgen. Ask about T-Cell treatment as well.

      I had genetic testing after treatment by OHSU in PDX (2017), Ancestry.com (2018), and 23andMe (2014). OHSU found a BRCA gene, but they don't know what it does - not the usual type - they'll contact me when they know more.

      23andMe found cancer mutations and heart mutations, but it was found after treatment with ACT & rads. I had a heart attack in 12/2016 and I learned Adriamycin is known to blow out the heart.

      No relatives with cancer. My weight was not at the obese level at diagnosis, and the fat cells were mostly around my waist. Stress has been the biggest factor. I believe working at Child Welfare Services (CWS) did me in.

      Androgen level was not mentioned by OHSU or 23andMe; I'll look into that, thanks.

      about 1 year ago
    • MLT's Avatar
      MLT

      fiddler, yes I am TNBC. Genetic testing was much more specific, looking for mutated genes.
      I will have scans and an echocardiagram next week to check my heart. Finishing round 6 of chemo today. I get 1/3 dose of adriamycin each week for 3 wks, then a week off. I really think my treatment will change soon. Unfortunately, insurance may control what comes next. Yikes!
      I knew about heart problems and possiby leukemia going into this.

      about 1 year ago
    • fiddler's Avatar
      fiddler

      MLT - leukemia? Yikes! You're doing such a good job staying positive, at least I think you are. Man, you're strong! Good role model for me. Thanks

      about 1 year ago
    • MLT's Avatar
      MLT

      Thanks fiddler! I try to remain positive, but have my days.
      Robin Roberts on Good Morning America had TNBC. She later had a form of leukemia. She got bone marrow from a sister and is great now.
      My onc was very open about side effects of adriamycin. That's one reason for smaller doses.

      about 1 year ago
    • fiddler's Avatar
      fiddler

      Daylyn & MLT: How many years between occurrences for you two & Robin?

      The side effects of adriamycin were not disclosed to me and somehow I found something somewhere that said it's key in heart attacks, after mine, 3.5 yrs after the infusions.

      Oh well.... whatcha gonna do? It's the only thing they use for TNBC, so that or nothing ay....

      about 1 year ago
    • MLT's Avatar
      MLT

      fiddler, 1st time was 2009. I had lumpectomy, taxotere and cytoxin, and radiation. In 2013 I had a squamous cell carcinoma, skin cancer, in my lumpectomy scar. Even tho it has been called a reoccurence, it wasn't breast cancer. It was from the radiation. I had a mastectomy. April 2018 is my lat 3est for metastatic to bone and liver. My onc this time felt the lower dose of adriamycin would be safer to use for a longer period of time. Scans in July showed it was working. Sure hope scans next week show the same!
      Will have to see if I can find my info on Robin. She had bc once.

      about 1 year ago
    • fiddler's Avatar
      fiddler

      Good luck! I'm rooting for both of you.

      about 1 year ago
    • Daylyn's Avatar
      Daylyn

      1/21/2015

      about 1 year ago
    • fiddler's Avatar
      fiddler

      Daylyn, I don't know if you saw this on another thread, from tracyt:

      "I've been dealing with Tnb since 2013. It was very aggresive so I had surgery immediately followed by strong chemo and radiation. In 2014 it looked like I was cancer free but I wasnt. Tnbc is very tricky and loves to hide. Within months it metastisized to my lymphnodes, chest wall, attached itsself to the muscles surrounding my heart, my lung and my brain. I couldnt walk on my own or barely talk. I had been seen by the top doctors at CTCA,Mdm Anderson,Duke,UNC and more. I was given 9 months to live in 2015. I was told there was nothing else they could do for me because I've had to strongest chemos there is. My only daughter left Penn State to take care of me along with my husband in what was suppose to be my last months. My oncologist contacted one of her friends that has a clinical trial research center. They had a trial that had never been tried on a human before and there was nothing to ever penetrate the brain. I had nothing to lose so I tried it! Years later, Im still here feeling better than I've felt since 2013. Taking trips and living my best life!! Btw, The trial is immunotherapy and I dont get sick like I did when I was doing Chemotherapy!"

      about 1 year ago
    • Daylyn's Avatar
      Daylyn

      Thank you, I’ve been reading up on immunotherapy.

      about 1 year ago

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