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Triple negative inflammatory

MoosieMoosie Taree Nsw Member Posts: 30
edited April 2018 in Metastatic breast cancer
I had stage 3 triple neg inflam bc. Does anyone else with this take any ongoing  preventative meds?


  • Jen001Jen001 Member Posts: 29
    Hi Moosie,

    I'm also TN and will pm you.   Cheers, Jen
  • duxx1234duxx1234 BrisbaneMember Posts: 121
    I’m also Grade 3 Triple Negative but clearly haven’t been asking enough questions of my Oncologist!  Denial maybe? Are there different types of Triple Negative BC?
  • onemargieonemargie queenslandMember Posts: 1,255
    Me too @duxx1234 I had triple neg too stage 2a grade 3 and haven’t taken any preventative meds either since I finished chemo in oct 16. I did take both boobs off though. I see my oncol on Monday for review so I’ll ask him about the inflammatory type and get back to you all.  Margie xx
  • Jen001Jen001 Member Posts: 29
    I so very much wish there was preventative medications to stop reoccurrence such as the hormone treatments available to other types of breast cancer, but given TNBC doesn't have hormone expression, there isn't the same targeted theories available. From my understanding TNBC is heterogeneous (big word that sort of means diverse and made of many subtypes) with 6 main sub types currently know and others still being researched. For me, after neoadjuvant treatment and recent surgery, I am now on a course of oral capecitabine (xeloda) to destroy any micro metastatic cells that might be lurking after the surgery, given I had positive metastatic nodes removed under my arm, (PCR in my breast and no other cancer elsewhere in my body). My understanding is capecitabine is an existing approved drug in Australia used for treatment of metastatic cancers. There is a recent study in Japan called CREATE-X which had exceptional results from giving capecitabine to people with positive nodes or not receiving PCR after neoadjuvant treatment to increase their disease free survival rates. The results from the study were extremely favorable to TNBC. I am truly grateful to my surgeon and oncologist for being given capecitabine as my chances of reoccurance after neoadjuvant treatment were much higher than I would have liked (or what the would have liked too). I suspect with the results from the Japanese study the use of the drug will increase for those with TNBC similar to myself. I would suggest speaking with your oncologist about the CREATE-X study to see if the results and treatment is relevant to you, or perhaps there might be something else. Wishing you both the best onemargie & duxx1234
  • RachelGRachelG BrisbaneMember Posts: 50
    Hi @Jen001, my oncologist told me this week I will have capecitabine once I have finished radiation. I just wanted to know how you have found this medication in regards to side effects? Are you taking it for six months?  It is great this is available for us TNBC people x
  • RomlaRomla AdelaideMember Posts: 2,003
    Hi @RachelG I found a website which is Australian government site and looks at all pharmaceuticals.Hope it helps.

  • Jen001Jen001 Member Posts: 29
    Hi Rachel.   I agree, it is great that there is this option for TNBC.  I am still working full time and the side effects for me have been manageable to date.   
  • duxx1234duxx1234 BrisbaneMember Posts: 121
    Thanks @onemargie, I would appreciate you getting back to me. I had no idea there were different ‘types’ on TNBC.  I am also Stage 2a Grade 3 but had lumpectomy, axillary dissection, 4 doses of AC, have just had third dose of twelve of Taxol, then 30 doses of radiation. Fun times, NOT!  Maureen x
  • smokie08smokie08 AdelaideMember Posts: 155
    Hi all I am TNBC as well  stage 2b grade 3. Do you ladies still see your oncologist ? Mine  discharged me  after  chemo  only under  surgeon  now   sometimes wish I still saw him as sometimes think of questions to ask  and he was a nice man that made me laugh . The surgeon is quite different  makes me feel a bit nervous when I see him.  
  • Jen001Jen001 Member Posts: 29
    Hi Smokie, (love your kitty!)   I am still seeing my oncologist, but I'm still under treatment with the capecitabine.  If you still have questions, I don't see why you can't make an appointment and see him.  

    I'm also interested how long others have seen their oncologist for once the main treatment has stopped ?   
  • duxx1234duxx1234 BrisbaneMember Posts: 121
    I’m still having chemo so see my Oncologist weekly at the moment.
    Ive got 9 more sessions of chemo left so I guess I’ll wait til my treatment has finished and then ask some more questions. 
  • RachelGRachelG BrisbaneMember Posts: 50
    Thanks @Romla and @Jen001 x
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