Triple Negative Stage IV

18990929495103

Comments

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2019
  • Momchichi
    Momchichi Member Posts: 98
    edited October 2019

    thanks for sharing, Lynn. It does sound promising!

  • JoynerL
    JoynerL Member Posts: 1,392
    edited October 2019

    Girls, I have a question. My ER+ (for 28 yrs) BC mutated to triple negative this past February, or so a pathology report says. I have been on Xeloda successfully since this past Feb. What is the likely next drug for me, or what are the likely choices?

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited December 2019

    Hello everyone. I was recently diagnosed TNBC and will start abraxane/tecentriq today. Anyone else on this combo?

  • Liwi
    Liwi Member Posts: 249
    edited December 2019

    is tecentriiq an immunotherapy drug? My doctor today mentioned possibly starting mynon Abrams with an immunotherapy drug. We’re going back to Gem/Carbo for nor but sounds like that might be next in the line up for me. I’ll be real interested in your experience with it.

  • melmcbee
    melmcbee Member Posts: 371
    edited December 2019

    Hello, my pathology is showing ER- and Her- but mildy PR positive and thru my research believe that this means treatment will be for triple neg bc. I had an abnormal ct scan and it showed a narrowing in the colon. Colonoscopy biopsy results showed met ilc cancer in all areas. Pet scan showed new bone lesions. Im just waiting fir mdanderson to call me after they see the foundation 1 final report and set up treatment options. I have been ER positive for 7 years so now with the change Im trying to research treatment options. I dont really understand the final pathology report. I know I have PD-L1 but I dont see any other helpful genes or mutations. Thanks for any insight that you have

  • JoynerL
    JoynerL Member Posts: 1,392
    edited December 2019

    Oh, Mel, I wish I had insight to offer. I just don't know but wanted to offer encouragement.

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited December 2019

    liwi, yes it is immunotherapy. It targets the PD-L1 mutation. Abraxane is what has been approved by the FDA to be used it for TNBC. It took over two weeks to get approved by my insurance for this. Cancer is so expensive!

  • Buddhahead
    Buddhahead Member Posts: 19
    edited January 2020

    WAnderingneedle--I've been on Taxol and then Taxotere and Keytruda for about a year for TN Stage IV. I"ve been having good results. Tecentriq/Abraxane wasn't approved when I started this. How are you doing?

    Also, I see you live in Fallbrook. We're practically neighbors in this vast BC community. I live In Encinitas. :-)

    Lynn

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited January 2020

    Hi, Lynn,

    I’m tired! The tecentriq has messed up my thyroid but I don’t see an endocrinologist for 2 more weeks. Everything aches. I was on abraxane before and I didn’t like how it made me feel. It took about three weeks to get this treatment approved by my insurance even though it’s been FDA approved since last March.

    When we came to the area we moved to Fallbrook because I didn’t want to live near the beach. 😂 Fallbrook just isn’t near anything and my husband drives to Anaheim everyday for work. Hopefully not much longer.

    How are you? How is the keytruda

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2020

    Girls-

    An exciting press release came out on Monday:

    CytoDyn Files for Breakthrough Therapy Designation with the FDA for the Use of Leronlimab for the Treatment of Metastatic Triple-Negative Breast Cancer

    I had my after-scan meeting with my MO yesterday and discussed this with her. This treatment is associated with the CCCR5 antagonist (per a Google search, CCR5 is a gene and a chemokine receptor, something related to protein??). I checked my Foundation One report, and as of my test 11 months ago, CCR5 was not among the genes listed as being included in the testing.

    My MO told me that like the new Ventana test developed to identify PD-L1-positive patients, if Leronlimab is approved, they will develop a special test for the presence of CCR5.

    I also found this description of CCR5:

    CCR5 and its interaction with chemokine ligands have been crucial for understanding and tackling HIV-1 entry into target cells. However, over time, CCR5 has witnessed an impressive transition from being considered rather unimportant in physiology and pathology to becoming central in a growing number of pathophysiological conditions. It now turns out that the massive efforts devoted to combat HIV-1 entry by interfering with CCR5, and the subsequent production of chemokine ligand variants, small chemical compounds, and other molecular entities and strategies, may set the therapeutic standards for a wealth of different pathologies. Expressed on various cell types, CCR5 plays a vital role in the inflammatory response by directing cells to sites of inflammation. Aside HIV-1, CCR5 has been implicated in other infectious diseases and non-infectious diseases such as cancer, atherosclerosis, and inflammatory bowel disease. Individuals carrying the CCR5Δ32 mutation live a normal life and are warranted a natural barrier to HIV-1 infection. Therefore, CCR5 antagonism and gene-edited knockout of the receptor gained growing interest for the therapeutic role that CCR5 blockade may play in the attenuation of the severity or progression of numerous diseases.

    Do read the press release. It seems very exciting, if preliminary. I'll post this in the Bone Mets and Ibrance strings, too.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2020
  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited January 2020

    take a look at the 'Breaking news not from BCO' thread... 2 or 3 recent mTNBC breakthroughs on the last page or so....



  • JoynerL
    JoynerL Member Posts: 1,392
    edited January 2020

    Will do...thanks. Didn't know about that string-

  • Kkmay
    Kkmay Member Posts: 89
    edited March 2020

    Hi Ladies!

    My mom was just diagnosed with TNBC stage IV mets to bones and probably lungs. She progressed to stage IV during adjuvant Xeloda. Her MO juststarted her on a chemo called halaven/eribulin. Any ideas on how effective is this? And how fast can you feel the effect?

    Note: Stats below are of my mom

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited March 2020

    KKmay sorry to see this news about your mom's cancer progressing. I hope the new treatment will help her. Hugs to you.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited March 2020

    (apologies/ thought this was TNBC thread)

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2020

    Barbarian (LOVE your name), it IS the TNBC string.

  • santabarbarian
    santabarbarian Member Posts: 2,311
    edited March 2020

    Sorry, I meant the TNBC forum. I am not stage 4, but am still in the prime recurrence window forTNBC so I am understandably very interested in the info here. Love to all the TNBC sisters.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited March 2020

    And to you! Stay well!

  • Kkmay
    Kkmay Member Posts: 89
    edited March 2020

    Thank you ladies! Fingers crossed her new treatment will work

  • moth
    moth Member Posts: 3,293
    edited July 2020

    Just saying hi to join this thread. I'm in a clinical trial with atezolizumab + taxol & either ipatasertib or a placebo. So far it's working - had regression on almost all mets except one in the liver which grew a bit, but overall tumor burden is down.

    My MO is certainly very enthusiastic about immumotherapy for us TNBC'ers.

  • JoynerL
    JoynerL Member Posts: 1,392
    edited July 2020

    Wonderful, Moth! Keep us posted!

  • dlittkemann
    dlittkemann Member Posts: 91
    edited July 2020

    Hello! I was dx in 2018. Stage 3 TNBC

    Feb 2020 dx with mets to pelvis and spine. I am on Abraxane and Tecentriq. Recently had some pain in back. Meds controlling that tho

    Very tired and aches but my tumour markers in blood are declining. I pray that continues. I have a 6 year old (his bday is today!)

    Hoping we all get good news. Glad found this thread. Some days I cry a lot. It’s so hard to imagine that this is what I’m dealing with. I’m sure all of you feel same. Such a shock.

  • moth
    moth Member Posts: 3,293
    edited July 2020

    happy birthday to your boy!

    The aches and pains can be so draining and hard to figure out if it's the cancer or se from treatment or aging or just slept funny etc. I used to go for massage therapy regularly but that stopped with covid. I'm sure some of my aches are just the same ones I had before but now with cancer everything seems ominous.

    I think I still cry at least once a day and there's a voice in my head screaming "how is this even happening to me" every day

  • dlittkemann
    dlittkemann Member Posts: 91
    edited July 2020

    @moth I so get it. I’m same. Cry once or more a day. Also since you are on same therapy as me, have you found your hair is coming back some? I worry it means chemo isn’t working??

  • moth
    moth Member Posts: 3,293
    edited July 2020

    samesies!!!!! my hair is growing back too!

    It did last time about 3/4 of the way through my 12 weekly taxol so I think it's just taxol weirdness?? I hope so anyways.

    I will ask my MO next week (if remember lol)

  • Wanderingneedle
    Wanderingneedle Member Posts: 220
    edited July 2020

    Hello everyone, I’m looking for some insight into Gemzar. Has anyone been on this chemo alone for TNBC? My oncologist is recommending this as my next treatment but not finding a lot about unsung it as a single agent for TNBC. I’ve seen some have used it with liver mets but I have bone mets, and some have used it in combination with carboplatin. I’m not opposed to it, just looking for info. Thanks. 🙂

  • moth
    moth Member Posts: 3,293
    edited August 2020

    dlittkeman, I asked my MO about the hair and she said it means nothing in terms of how well taxol is working. She said hair loss/growth on taxol varies from person to person

    Wanderingneedle, did you find anyone using it alone? Back a couple months ago when my MO was worried this trial wasn't working for me (before my scans) she gave me handouts on what she was thinking of next and 1 of the choices was gemzar, but with carboplatin, definitely not alone.