As you probably know, Kate our founder recently had to take a tough decision. After living 28 years with Medullary Thyroid cancer, she was faced with re-entering the patient world and commencing active treatment. Christine chatted with Kate about her experience so far and she gave a very candid account about how things have been so far.
Christine asked Kate how it has felt to be a patient again, she said it was a real shock to the system:
“I have been in denial for a long time, I have been living with my diagnosis for over 28 years but it was stable for the last 13 years so I was used to feeling a certain way. In some ways it feels like a new diagnosis. I have been fatigued and feeling crappy for 12 months and kept putting it down to a virus.”
Kate has taken the decision to participate in a phase 2 clinical trial with targets a genetic characteristic her cancer harbours called a RET mutation.
“Once I had decided to go ahead and enter the trial, I just wanted to get on with it. But of course, there is a mountain of paperwork, appointments, scans and lots of waiting…. Weeks of waiting.”
Finally, Kate got the call she was accepted to the trial and she had a date to appear at Royal North Shore Hospital.
“Packing my bags the night before to head to Sydney I had an overwhelming feeling of fear of the unknown. I wasn’t packing for a holiday or a work trip. Will I have to stay at the hospital because of unexpected side effect will I come home feeling the same? It felt like jumping into a void. There is a lot of information about what you might expect taking the drugs and some of the warnings are really scary.”
Kate has been totally relieved and surprised to experience very few side-effects.
“It has made me realise how awful I had been feeling. Richard said the first day, you look different already. I have been extremely well looked after, everything is very well run, and the trial coordinator is very skilled and caring. I am incredibly lucky that this targeted therapy exists. The only other treatment options available for me before this drug (LOXO 292) was introduced, have considerable, debilitating side effects. These drugs are not listed on the PBS for my type of cancer. I was really worried about the idea of potentially being on a drug for life, but there was nothing except chemo last time I needed treatment 13 years ago, I’m very grateful.”
Christine asked Kate what she would want her well-wishers to know about how she’s travelling:
“I’m feeling better than I have in months. It doesn’t mean I am well, but I’m managing and hopeful.