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Triple negative

Sharonb58Sharonb58 Member Posts: 19
edited September 14 in Newly diagnosed
Good morning.  I have been diagnosed with triple neg bc in June, I have started a clinical trial that I'm just over half way . I'm finding myself getting really nervous about every little thing which is affecting me greatly.  I would love to hear from some positive triple neg members, I need a bit of a push and to hear something positive 😊 
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Comments

  • iserbrowniserbrown Regional VictoriaMember Posts: 5,148
    I will tag someone that I think is Triple Neg
    @SoldierCrab


  • arpiearpie Mid North Coast, NSWMember Posts: 6,247
    Hi @Sharonb58 I am not triple beg, but hope you are going well with the trial so far ... feeling nervous and a bit edgy with different things happening to your body is quite normal .. but if you find it becoming a bit overwhelming ... make sure you chat to your GP or Breast Care Nurse about seeing a counsellor.   They will be able to give you coping mechanisms ...  there should also be a dedicated Onc Socil worker who my  

    I see your treatment is in Coffs ... do you live in town or do you have to travel to get there?  NSW has IPTASS to help with fuel and accomodation costs if you live away from major centres. You can add your town to your profile, then others locally may be able to advise you of local services that may help you xx 

    Feel free to check this post out for general info on the blog... we even manage to have a laugh as well as showing off our gardens, pets, art and craft!!  https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    take care and all the best with your continuing treatment xx
  • SoldierCrabSoldierCrab Smithton Tas was Bathurst nsw Member Posts: 3,410
    @Sharonb58
    HI I am now 9 years since diagnosis and NED (no Evidence of Disease) 
    I also help admin the Facebook group Triple negative breast cancer for australian and nz sisters https://www.facebook.com/groups/1166665270079659
    we also have a stage 4 group https://www.facebook.com/groups/876955882827253
    Happy to answer any questions for you. 
     as Arpie said if you need support with your mental health please ask for a mental health plan from either your Onco or GP 
    Thanks Iserbrown for tagging me :smile:
    is treatment easy  not really but it is doable... I always thought one more day towards completion of this brings me one more day closer to surviving this disease. 

    I had double mastectomy my choice then 9mths of Chemo and 6 weeks of Raditation... 
    Happy to chat with you
  • Sharonb58Sharonb58 Member Posts: 19
    Thank you so much !
    I am seeing my breast care nurse tomorrow so will reach out to her. I have been going along fine but ( maybe reading too much online ) and it all just sounds so negative and has left me in a bit of a slump .
    I know triple neg is going to be difficult but I have heard they have made progress in recent years with treatment.  

    It's wonderful to hear that you are 9 years NED , I love hearing that ! I too will opt for mastectomy, I have only 5 more treatments of chemo immunotherapy then surgery 2 weeks after clinical trial finishes.

    I look at it as one more day closer to being finished, just have to get a bit more positive!

    Thank you so much for answering and leaving links . This is a wonderful way of not feeling alone in this journey xx
  • Sharonb58Sharonb58 Member Posts: 19
    Thank you arpie for your information! 

    I'm from Port mac and go to Coffs harbour for clinical trial and I didn't know about being able to claim travel ...thanks so much !

    I will be busy looking at all these links .. I just need to think and be a bit more positive. 

    I really appreciate your advice x

  • jennyssjennyss Western NSWMember Posts: 1,591
    Dear @Sharonb58 ,

    from jennyss in Western NSW
  • arpiearpie Mid North Coast, NSWMember Posts: 6,247
    Apologies, @Sharonb58 ... re-reading my post - it doesn’t all make sense! .. I must have accidentally deleted some bits (as well as the spelling errors!). DUH!

    The cancer centre at Port definitely has a dedicated Social Worker who may also be able to help out in other areas as well, eg if you are having financial stress as well  ...  I saw her a few times when I had my Rads there in 2018 and had a few hiccups when the wheels fell off .... 

    They usually have the IPTASS forms there as you enter the waiting room to see the Oncs (on the wall) .... or just ask at the front desk for copies.  Usually your GP needs to fill out one page, the person running the trial should fill out the next page and you fill out the rest. Once you’ve done that, you can just submit online claims!  

    The front page will ‘take’ several trips and you can add a 2nd page if you need to for more trips.  You can wait til the end and claim all in the one hit, or do them as you go .... probably less confusing to do the whole lot in one go, I reckon.... You can register and print off the forms here:
    https://www.service.nsw.gov.au/transaction/register-online-isolated-patients-travel-and-accommodation-assistance-scheme-iptaas

    take care, xx
  • Sharonb58Sharonb58 Member Posts: 19
    Lol ...I really didn't notice !

    Yeah , thanks for that ! I will inquire tomorrow.  It's a 300km round trip and sometimes it's twice a week so that would be really handy to get something back.

    I have spoken to Joanne from Port but not since I have been going to Coffs. I find that they are so good so will just have to say I've been struggling mentally a bit instead of going everything going ok !

    Once again , thanks for this info . I will get that sorted 👌 
  • colthulcolthul Toowoomba, QLDMember Posts: 14
    Hi @Sharonb58 which trial are you in? I am in an immunotherapy trial for TNBC and am almost half way. Interested to see if you are in the same trial. Mine is for stage 1 TNBC and from what I have read and head from others it is having fantastic results. By my third infusion I no longer had a palpable mass. It's hard not to get excited when your oncologist is excited lol. 
    I have had some ups and downs, I had to miss my taxtol treatment last week because my neutrophils were too low and my liver function almost stopped me having it yesterday. 
  • Sharonb58Sharonb58 Member Posts: 19
    Hi colthul , thank you for your reply . It's definitely sounds like we are on same trial , mine is in Coffs harbour but I live in port Macquarie nsw.
    I've missed one for same reason , I have one big one to go and two little ones . It's so great to hear you have had good results so far , I have a mammogram in a couple of weeks to find out . I am glad I opted for the trial as I to have heard of the great results it gets . My nurse yesterday said it's very close to being on pbs. 

    I love hearing positive stories like yours . I've been fairly good throughout but now just getting a bit jittery, my nurse seems to think this is normal reaction as treatment coming to an end . I have surgery two weeks after treatment but unsure yet what they are going to do ...results will determine that I guess.

    I guess it's good just to hear from someone that is in same situation so you have lifted my spirits today 😊 
    Keep smashing out those good results 💪 
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 283
    Hi Sharonb58, I was diagnosed with triple negative BC in October 2018.
    I first had surgery , partial mastectomy, in Dec 2018, started in Feb 2019 6 months of chemotherapy, surgery in July 2019 for a full auxiliary clearance, then commenced 30 radiation treatments in September ..All treatment finished in October 2019.
    I have been cancer free  coming up to 3 years.
    You can do this , stay positive, the mind is a powerful thing.
    You have got this.

  • Sharonb58Sharonb58 Member Posts: 19
    Hi shellshocked2018 . Thank you for your message.  I love hearing stories like yours ! I'm so happy to hear that everything going well for you !
    I am nearing the end of my treatment, don't know what surgery yet ( lumpectomy/mastectomy) and I'm just getting the jitters ! 

    You are spot on when you say to keep a positive mind ...I try most of the time !

    Thank you for your positive vibes 🙏 xx
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 283
    Sharon58, it certainly is a roller coaster ride, I never called it a journey.
     I just started going with the flow, cross each bridge as you need to, ride the waves so to speak.
    Your surgeon will do what’s best for you regarding surgery. Surgery is a breeze compared to Chemotherapy treatment. Radiotherapy is also a breeze compared to Chemotherapy, you have just about completed the hardest treatment of all.
    Try and stay as active as you can, drink plenty of fluids.
    You can pm message me anytime 
    Sending hugs x
  • arpiearpie Mid North Coast, NSWMember Posts: 6,247
    @sharon58 - has your Onc mentioned Immunotherapy at all re your Triple Negative?  In the USA they use Keytruda (approved in Aussie for Melanoma & Lung Cancer) for Triple Negative ..... there may be other Immunotherapy treatments being used over here .... Maybe ask your Onc about it xx. 
  • Sharonb58Sharonb58 Member Posts: 19
    Hi arpie.  Yes I am having immunotherapy in my trial . I will mention this one when I see my onc on Thursday.  I have heard it is receiving great results ..fingers crossed ! The good thing is more research and results are improving!
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