Patient Stories

Anita's Story

Anita was 44 when she was diagnosed with with an inoperable, four-centimetre tumour on her right lung. A mother of two young boys, a wife, a daughter, Anita endured chemotherapy and radiotherapy, only to be told her lung cancer had not been cured and she had another inoperable and life threatening tumour near her windpipe. The statistics for surviving stage 4 lung cancer are grim. Only 19% survive beyond 12 months (check). Anita underwent a new testing procedure to identify genetic mutations in her cancer that identified  a rare mutation, known as anaplastic lymphoma kinase (ALK), in her lung cancer.

Fast forward 6 years and Anita is taking a drug directed against the rare mutation in her lung cancer called alectinib, and enjoys a life full of XX. Her boys are now 12 and 16 years of age, with her eldest son undertaking his final year of high school next year.

Quote (what has the treatment enabled you to enjoy/live/see that you may not have been otherwise able to?- eg when I was fist diagnosed I never thought I’d live to see my sons in high school, and now one of them is close to graduating.

But the shadow that resistance to treatment will eventually occur is always there. There are even newer drugs available that are also directed to Anita’s rare ALK+ lung cancer, but they are not funded on the PBS. Anita, and others like her, are unlikely to be able to afford such expensive treatment, even if it is the only option for saving their life.

TOGA is conducting a clinical trial called ALKTERNATE that alternates alectinib and a newer drug, lorlatinib, for people with ALK+ lung cancer like Anita’s. The drug gives access to lorlatinib, which is not currently reimbursed by the PBS for patients with ALK+ lung cancer, but it is also hoped the alternating cycles will delay the onset of resistance, and provide more understanding into the science behind drug resistance.

Currently ALKTERNATE is only open to patients who are treated at one of two hospitals, and because this is a rare type of lung cancer, we still have to include many more patients on this trial and examine their biological response to understand more about treatment resistance. We would like to open ALKTERNATE in more hospitals so more patients can access this treatment and we can complete this trial faster so the research we uncover about treatment resistance can be used to design better treatments that can help Anita in the future. You can help Anita by donating XX to  assist in opening an additional hospital site, and to streamline the data and tissue collection so we can rapidly discover new treatment options for patients with ALK+ lung cancer.

Lillian's Story