Forum Discussion

kabash's avatar
kabash
Member
3 months ago

From bad to worse, but getting better.

I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access.

I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece  

I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer.

So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? 

Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried  

I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). 

So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. 

 I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story!

I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne. 

coping
metastases
progression
recurrence

4 Replies

  • arpie's avatar
    arpie
    Member
    3 months ago

    Golly Gosh kabash​ - what a rotten time you are having on it xx.  Wishing you all the best xx

    I've never heard of the 'blow up' treatment histotripsy ... I wonder how long before it becomes available over here?  

    Is the lack of PBS funding because of the other treatments that you had first - or the fact that it isn't 'OK'd' yet for your cancer type?  I HATE that some PBS treatments are "OK" for some cancers, but not funded for other types.  😕   It nearly happened with my husband's chemo.  We'd sold stuff to get ready for paying for it - then, on the day his treatment started, it came onto the PBS!  $30 instead of $1500.

    Take care & all the best xx

    • kabash's avatar
      kabash
      Member
      2 months ago

      One of the drugs I need is not yet on the PBS for my cancer type even though there is research to support it in my type (15 months of extra progression free survival). The other I can’t get because I had it earlier and it failed. My argument is that when I had it I did not also have aromatase inhibitors as should be standard of care. So I have to pay to get it now. The good news is the drug company has offered to cover it for me once I pay for two more doses. So 12k for my first three doses but after that it will be free for as long as it works. The panel of oncologists agreed they don’t think it will add benefit but I think it’s still worth trying as there is basically no evidence to tell us what to do. The good news is I have forgiven my oncologist as he gave me a compromised first line to guarantee I would get the best second line under PBS rules. So I understand his reasoning/rationale at least now. I am getting the other drug from India too for cheap. They reduced the price from 5 grand to 3.5 but in India I can get it for like a hundred a month. I much prefer that price. 

      Histotripsy is a really cool new treatment that uses sound waves to blow up tumours. They are turned into a soup of acellular debris. At this stage it’s only being done in the liver but there are trials for kidney and pancreas going on. For people with cholangiocarcinoma it gives them a good treatment option where options are lacking. store people with primary liver cancer it can potentially be curative. For people like me with liver mets it can help reduce burden and sometimes there’s this magical effect that is not well understood yet where other tumours that are untreated regress.

       

  • cranky_granny's avatar
    cranky_granny
    Member
    3 months ago

    kabash​ 

    just copied this did the search 🔍 

    also join the private group for living with metastatic breast cancer 

    go to groups scroll down and you'll see us in list ask to join  it probably wont be actioned before Monday. 

     

    VICTORIA

  • cranky_granny's avatar
    cranky_granny
    Member
    3 months ago

    kabash​   I’m sorry you’re having roller coaster. That’s rotten that you can’t get the Palbociclib on the pbs , I have mets to various bones been on Palbo for 5 years now.  I had the full gamut of treatment back in 2017. Chemotherapy, lumpectomy and radiation but still managed to get the mets (there was never any guarantee I wouldn’t) I really don't understand the criteria for getting the Palbo on PBS. I obviously qualified. I am ER PR positive Her negative. I know its the 1st line of treatment for me. I have been told in my case it won’t stop the lesions but slows the rate of growth down. Hopefully in time the powers that be will extend its use. They are giving it to those at high risk now before any mets. 
    I know how much it costs per month without PBS. Hopefully you can get it under compassionate grounds  I’m in Sydney  Melbourne have a lot more support services than here  hopefully someone down there can link you up Have a look at the Peter Mac website

    Somewhere on this forum there is a list of support groups  try the search 🔍 bar   In the meantime I’ll try find it  and get back to you