When you have a rare disease, you don’t have the luxury of a standard treatment path and every new option that becomes available is like winning the medical lottery. With most common cancers there are tried and tested chemotherapies that are known to be successful – and they in turn have a common protocol that is followed. Even when I was on chemotherapy treatment, it was never for a set amount of time, it was more watch how it was going and then decide whether to continue for longer or look for another option.

Towards the end of last year my oncologist mentioned that I might be able to access an experimental drug (gamma secretase inhibitor), that wasn’t currently being trialled in Australia, but there was a drug company that had stock and might be able to be provide it to me on a compassionate basis. It had to be approved for me to be given it, and once this happened I was still unsure about it and moving away from what I considered the safe option, staying on chemo that was known and more regularly used on other patients.

All I knew was it was a drug that had no name except for a combination of letters and numbers, there was one other person in Australia being treated with it, it would be less toxic on my body than chemo and had shown a lot of promise in early stages of trials.

I went into full research mode, trying to find any information I could on this type of inhibitor, which didn’t provide me with many results. Then at the same time I researched like crazy on the benefits on staying on the chemo combination that whilst not providing massive shrinkage of the tumour, had stabilised the growth and had some results.

Ultimately I followed my oncologists recommendation and in January this year started on this new drug. The first two times I did it there were pretty major side effects and had me thinking if I’d be able to do it weekly if it was going to be like that each time.  After the second round of treatment I had abnormal blood results where my liver function was elevated way above normal levels. I took a week off which got things back to normal and once I started it again my dose was lowered and I’ve been able to tolerate it a lot better and the side effects have calmed down a lot.

Looking back on it, I am glad that I did start this new treatment. I can really notice the difference between chemo and non-chemo drugs. When I was on chemo I could feel the chemicals going through my body for up to 3 days after doing the treatment. I don’t feel this at all now. I also have much more energy and don’t get the horrible fatigue (more like a hangover feeling) that I did from chemo.

So far I can feel that the tumour doesn’t protrude as much anymore which most likely means it is smaller, but I will have a scan at the end of April to see exactly how successful the first 3 months have been.

A large part of feeling comfortable with going on this new treatment was accepting that my treatment options are never going to be conventional, and probably the most promising options are the new drugs that come out of research and clinical trials.