Dialog Box

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28
Feb
2019

Read GBM survivor Lyn Phelan's Avastin submission

 

Declaration of interest:

My name is Lyn Phelan.  In 2009 I was 45, a wife & mother of 3 sons and had a successful career as a practising pharmacist for 25 years.

In February of that year, I was diagnosed with a brain tumour the size of a tennis ball in the right parietal temporal area. Surgery on 11/3/09 resulted in a diagnosis of GBM.  

Considering only 22% of brain cancer patients survive more than five years and in those with GBM it is far worse, my survival at this point puts me in an extremely rare category of patient. Being both a pharmacist and a patient also gives me a unique perspective.

My memory and cognitive difficulties meant I was incapable of continuing my career.

My impaired peripheral vision ended my capacity to drive, consequently restricting my independence.

This survival has not been incident free and I’ve had a further two surgeries in November 2009 and March 2017. The histopathology report following this third surgery revealed the tumour was now testing as a grade 3 glioma and there were some favourable markers in it, which may explain my longevity.

Last year, a surveillance MRI in August revealed a third recurrence. Two new inoperable tumours.

I’ve received additional radiation and ongoing monthly temozolomide chemotherapy.

In 2013 I underwent training with Cancer Council Victoria to become a Cancer Connect Volunteer.

In this capacity, plus my involvement as a member of the Brain Cancer Support Group run at the Olivia Newton-John Cancer, Wellness & Research Centre, I have spoken with, met and supported numerous people with brain cancer.

Consumer input:

I support the addition of Bevacizumab (Avastin) to the PBS.

As a pharmacist, I appreciate the process of approving a drug for the PBS is a complex issue, requiring its safety tolerability and efficacy to be highly scrutinised for the safety of the public.

The TGA last reviewed Glioblastoma recurrent Bevacizumab on 18 August 2017, and a review is due by the end of this year. 

This is timely, considering it’s almost two years since the FDA in USA gave full approval on 12/6/17 to Avastin for the treatment of adult patients with glioblastoma that has progressed following prior therapy.

Over the ten years since my diagnosis I have seen many of my “new” friends agonise over the difficult decision to access this drug, at a huge financial burden to their families, making difficult end of life decisions when perhaps this money could have been better utilised on other aspects of their lives. 

Making Avastin available at an affordable price will bring extraordinary hope to many and relieve this burden.

I’ve seen quite varied outcomes from its use. Some have had an increased quality of life, particularly in the final stages of their illness, due to improvements in neurocognitive function, decreased cerebral oedema and reduced requirements for high dose steroids. This has resulted in delaying the deterioration and extended precious time with their loved ones.  Others have experienced significant and debilitating side effects and discontinued its use.

Ultimately ,despite treatment with Avastin, they have all died.

The current alternatives do not offer any better outcomes.

I’ve seen the devastation caused by high dose steroids at first hand. My friend put on 20kg due to the huge dosages required to control her oedema and keep her functioning. She stopped coming to the support group because she was too embarrassed and unrecognisable and became extremely depressed and isolated too.

I am not immune. With this latest recurrence, I’m only too well aware that at some point I’ll be facing those same dilemmas.

Unlike some, I can afford the cost of Avastin because I have ongoing income protection insurance.

I know only too well, living in the brain cancer community, how fortunate I am to be turning 56 in March and having been there with my husband of 30 years, to raise our three sons to adulthood. Our sons are forging ahead in their chosen careers. Two civil engineers and a pharmacist.

It is heartbreaking that brain cancer is continuing to decimate our young people and people in the prime of their lives and not allowing them to fulfil their potential and live their dreams.

Relieving some of the financial strain experienced by patients and their families and potentially offering a better quality of life at a time when health is declining would provide a huge relief to all concerned.

Thankyou for giving this your consideration.

Lyn Phelan.

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