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...
Forum Discussion
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
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.