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6mnths to live

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  • TripleNegMama
    TripleNegMama Member Posts: 47
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    Hi I've also had recurrence - so this is 3rd time for me with triple negative - they have told me now not able to be cured - hard to find a lot of positive stories with triple neg that has gone to mets and seems to be much more rapid progression than other forms of BC, have you looked at clinical trials? there are a number of new trials with combo's of immunotherapy with chemo or immunotherapy with radiation that are showing some promise with triple neg - mostly to buy more time not as a cure as such but with the new stuff you just never know when they are going to make that next breakthrough.
  • TripleNegMama
    TripleNegMama Member Posts: 47
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    go back through every super fund you have ever had and double check if you have any balance even if it only has $100 in it if it had any automatic  insurance death cover put on it - you can claim it under terminal illness and you may be able to use that to fund the immunotherapy or help your family - I found a couple of old policies I hadn't used for years and it was over $300,000 that I really hadn't counted on - but ask your oncologist to apply under compassionate circumstances for access to the drug on a reduced rate.  sending hugs!!!!

  • TripleNegMama
    TripleNegMama Member Posts: 47
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    have you talked to the physio about using a lymphodema pump to manage your lymphodema, I bought one to use at home but you can hire them - for me much easier than having to go to town for treatment at the hospital and has reduced the pain in my arm

  • Me2
    Me2 Member Posts: 35
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    Thank you triplenegmama, for your insights. Yes i believe us triple neg gals have definately drawn the shorter straw. So sorry for your recent diagnosis. Im having some quality of life while on the chemo. So much so the radiation oncologist suggests i hold off on more rads until i do more chemo. (So im in sydney 700kms from home) booked in accom for three weeks for radiation, now im heading home to have chemo, sydney trip for nothing. Its encouraging to hear that chemo is working but im exhausted from the trip. Oh well, it just proves there is absolutely no plan or routine with anything to do with cancer. It ruins everything. 
  • arpie
    arpie Member Posts: 7,595
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    Whereabouts do you live, @Me2 (just a town name will do ....)   My husband had his chemo there in 2010 (75% if his cancer die within 5 years of surgery & he is still here) and I had my radiation at Port Macquarie just 2 months ago over 4 weeks .... they have the Rotary Lodge (at VERY reasonable prices, - heavily subsidised by IPTASS, plus your petrol costs reimbursed to get there.)  It is attached to the Port Macquarie Base Hospital (a 50m walk from your room to your treatment) - and the chemo/rads are PUBLIC/free ...... it could well be worth looking into having any treatment there, if $$ are a factor.

    The Rad Oncs there are lovely - Dr Hansen is mine (and my uke buddy who has Met BC) - she is so thoughtful for our treatment ...... 

    I hope that you've got that lymphodema pain sorted ..... can you access the Marijauna Oil?  It is supposed to be wonderful for all sorts of pain ..... I hope so!
  • TonyaM
    TonyaM Member Posts: 2,836
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    Hi Me2,
    so sorry to hear your rotten news- it’s so unfair.My old mum had aggressive liver cancer and was told she had 6 mths- she lived for 14 mths.A lady in my group had cancer spots everywhere and told she was terminal - that was 4 yrs ago,now she’s cancer free.Doctors don’t always get it right.Where there’s life,there’s hope.xx
  • [Deleted User]
    [Deleted User] Posts: 0
    edited July 2018
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    The user and all related content has been deleted.