Triple Negative Metastatic Lung

MabelMabel Member Posts: 3
edited September 2018 in Metastatic breast cancer
I was diagnosed with triple negative breast cancer stage three in Match 2017. I underwent chemo, a lumpectomy and radiation followed by a course of captectabine. I had a reoccurrence in April this year and I was diagnosed stage four with spread to lymph nodes in the mediastinum and right pleural. The cancer has also invaded the skin of my right breast which has resulted in a painful skin condition. I have had 7 chemo’s and self funded Keytruda (immunotherapy). The Ketruyda made me very unwell and seemed to stimulate disease progression. I now have lymphangitis carcinomatosis in my left lung and a pleural effusion in the right. Have had effusion drained twice but it comes straight back. I also now have a liver met. I am on a high steroid dose which keeps me mobile short distances but some days I require oxygen which I have at home. I have just finished my first round of a combo of avastin and a chemo drug navelbine. I am 42 years old and I have two young children. Although recently place under palliative care I will never give up and my Oncoligist is on board with this. I am looking to connect with anyone who can provide me with a positive story in a similar situation as some days I find it hard to find hope which is what has kept me going through all of my treatments. Thank you. 

Comments

  • Riki_BCNARiki_BCNA Administrator, Staff, Member, Moderator Posts: 237
    Mabel sending you a private message
  • kmakmkmakm MelbourneMember Posts: 7,372
    My diagnosis was different from yours @Mabel, so I'm afraid I can't assist. This really is a bastard of a disease. Big hug to you and yours. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,189
    I can't help either @mabel - I hope Riki was able to give you assistance.  I just wanted to send you my best wishes for treatment.
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,913
    @Mabel just wanted to send u big hugs xo
  • wren71wren71 Member Posts: 44
    @Mabel I hope you find your positive story. Your certainly creating one of your own, one of fight, persistence and extreme strength. The fighting spirit your showing your children is incredible. You’re one strong woman x
  • arpiearpie Mid North Coast, NSWMember Posts: 2,872
    @Mabel - sending you big hugs and strength - you've been thru the mill and some.  Such a shame that Keytruda wasn't effective for you :(    

    Thinking of you and your family at this time xx
  • ZoffielZoffiel Regional VictoriaMember Posts: 2,793
    That's a really nasty position to be in, I'm sorry this has happened to you. Best wishes and hang in there. Marg xxx
  • onemargieonemargie queenslandMember Posts: 1,234
    Hi there @mabel. I had TNBC in May 2016 but stage 2a grade 3 no lymph nodes involved. I was 43.  I don’t have the same circumstances as you do but You sound like you are well and truly on the right track treatment wise and the human spirit is an amazing thing and is so strong and determined when it needs to be and it sounds like you are exactly that. Have you joined the living with metastatic breast cancer group ?  I’ve hesrd there’s plenty of inspirational stories on there. I’m so so sorry this has happened to you.  You are one strong determined woman and an inspiration to all of us especially me having had TNBC. Biggest hug to you and you’re family. Margie xx 
  • MabelMabel Member Posts: 3
    Thank you all of you for taking the time to write to me. It is a dreadful thing to go through but you do get to see the best of people when you are living with this hideous disease. Thank you Wendy55 for the support recommendations. I have wonderful family & friends but it is good know other support is out there. Thank you all again. 
  • onemargieonemargie queenslandMember Posts: 1,234
    Hi there @Mabel sounds like you have plenty of support which is great.  I know of a great supportive charity brisbane north side if you’re up this way. Just let me know. There is one also called mummy’s wish (mummswish.org,au) that would be perfect for you as they support mums with cancer with young children. Hope this helps. Biggest  hug. Margie. Xx
  • TennilleTennille Member Posts: 174
    Hi Mabel, I too am 42 with very young children.  I have TNBC mets to bone, liver and ovaries.
    I know how you feel and also refuse to ever give up.
  • TripleNegMamaTripleNegMama Member Posts: 47
    Hi Mabel, I'm 47 with TNBC that has recurred 3 times now and while my recent surgery got a lot out and they can no longer see on CT scan the pathology showed it was positive margins and it's expected to keep coming back and no current chemos expected to help.  this stuff really sux.  Especially when you have young kids.  I have done a bit of research (as you do when desperate) and while none of it helped me as my tumour doesn't have anything that they can target at the moment, just thought I'd mention some of the testing I had done in case it might help you.  If your tumour has androgen receptors a very new approach has been to use prostrate drugs on it (this is not a standard test to get done you'd probably likely have to ask for it), on another TNBC page one of the ladies went from mets to lungs, liver etc to currently NED 2 years out.  If your tumour has mesothilin on it there is some new clinical trials targeting that.  If your tumour has high PDL-1 then that can help identify appropriate immunotherapies that are more effective.  I also had Foundation One testing done (cost about $4k) while it has identified certain features they do not currently have a treatment approach but I heard there is a clinical trial in Melbourne targeting AKT1 which I'm hoping is successful and leads to further treatment approaches targeting AKT mechanisms because my tumour has very high AKT2 levels.  you may well have discussed all this stuff and current clinical trials etc with your team but just thought I would mention as my oncologist was not up on this stuff and when I kept pushing for info has now referred me on to specialist breast cancer oncologist who has then referred me on to oncologist involved in clinical trials to make sure we are looking at all options and newer treatment possibilities.  Sending gentle hugs
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