The cost of living | PERSONAL STORY

My name is Caro and I live near the beach in New South Wales. I turned 65 in February. I was expected to pass away in late 2015, a year after my diagnosis of advanced metastatic breast cancer in my liver and lungs.

One of the treatments my oncologist spoke to me about was palbociclib. Unfortunately I was not eligible to enrol in the clinical trials that were open for this drug. It was incredibly stressful when my oncologist told me that a drug existed that would probably benefit me but I would have to find it myself from outside of Australia.

So far, I’ve spent approximately $100,000 on palbociclib (since June 2016). Personally, it’s been worth every cent. So far it has given me an extra nine months of active living time, feeling perfectly well. I’m currently training for and entering ocean swimming races with the Can Too foundation. Without that drug I believe I would either be dead by now or suffering all the side effects of heavy-duty chemotherapy.

It took a great deal of research to source palbociclib, and for the first shipment of one month’s supply I was charged $17,000. Since then I have located a different supplier overseas who charges ‘only’ $10,000 per month.

But of course I am lucky. While most breast cancer patients are not able to afford it, I can use up my superannuation money. Still, every month there is more stress, sending such huge amounts of money overseas and trusting that the bottle of 21 pills will arrive safely.

Because of hormone treatments and then the palbociclib, which I take with another drug

(Faslodex), I was able to travel overseas to Cuba (a bucket list item), and to see friends in the USA and Canada. I have also had four interstate holidays since the diagnosis and am enjoying many dinners and events with friends.

I have been unexpectedly able to see two new babies arriving in our extended family in 2016, which is such a thrill. I have seven nephews and nieces, one of whom suffers multiple problems, and these beneficiaries will no longer benefit from my will in the way I thought they could, as I am spending their inheritance on palbociclib!

But I’m still grateful I can get it. It breaks my heart to think of so many other Australian women who know it’s there but cannot get access to it.

Carolyn, NSW

Carolyn at a Can Too event


Issue 78
Autumn 2017