Help get our Mum the cancer treatment she needs

Dear friends, we are starting this fundraiser to collect funds to pay for the treatment costs of our Mum, Julie, who has stage 4 metastatic lung cancer and has exhausted all treatment options.

A few days after Christmas in 2020 our mum noticed a small blur in her vision. Thinking it was probably nothing to fear, she visited her optometrist who expected that she had a detached retina, a very common and trivial-to-treat condition.

Following a series of long and stressful tests our Mum, a non-smoking, otherwise healthy and active 54-year-old was diagnosed with late-stage HER2-positive lung cancer. As anyone reading this will imagine, this was a devastating shock to the whole family. Not just how out of the blue the diagnosis was, but the stage at which this disease presented itself, with no prior warning or symptoms.

Over the last few years, Julie has received an onslaught of treatments, chemo, immunotherapy, and radiotherapy. As well as nominating herself for two early-stage drug trials. Despite this rollercoaster of treatment, our mum remains positive and continues to fight. As her family, all we’ve been able to offer is our company and emotional support. Needless to say, we’ve felt powerless throughout.

During the initial stages of her treatment the mutation HER2 was identified. The HER2 mutation is very rare in lung cancer, affecting only about 3% of people with the disease. It hits indiscriminately but seems to be more prevalent in non-smoking, younger, and female people. Her oncologists have recommended a drug known as Enhertu - made by AstraZeneca and Daiichi Sankyo. Despite Enhertu being available, and widely so, for lung cancer patients in the US and breast cancer patients in the UK (via the NHS). This drug is not available on the NHS in the UK for those with lung cancer.

Enhertu has shown amazing promise in HER2+ lung cancer patients. However, NICE (the body that approves drugs to be delivered on the NHS) has said they are still waiting for a submission by the pharmaceutical companies to allow this drug to be paid for by the NHS. When this will happen is a mystery and until then, and with no access to the drug on compassionate grounds, the NHS insists that patients wanting access to this breakthrough therapy will have to front the cost themselves – to an extraordinary personal cost. See here a petition calling on this drug to be fast-tracked to lung cancer patients (sign here).

Julie has contacted both pharma companies, the NHS, NICE, and her local MP and multiple cancer centres. None have been able to or are willing to do anything for patients in her position. It is a travesty that drugs with known and measured benefits are not able to be used by patients who need them most.

So, we are left with one option, pay for this therapy privately. This drug is being provided to lung cancer patients in the UK for £5000, for each treatment cycle. One treatment cycle every 3 weeks. We are not a wealthy family, and every penny of my family's savings is being spent on enabling our Mum to buy a little more time with her family. Mum has scheduled this treatment to be delivered at the Bristol Royal Infirmary in the UK. Cancer patients and their families often have to rely on hope and optimism even in the darkest of times. Hope that new therapies become available, hope that they respond a little better than the average person, and hope that they will be able to spend a little more time with their families and friends. Despite the miracle of modern medicine, sometimes hope is the only thing we have.

Our hope is that one day all patients will have access to the best possible treatment for their disease and not be faced with these nightmarish decisions. Julie should be living the best part of her life right now but is forced to live this one instead.

Any contribution, however small you are willing to donate to this cause will be appreciated. All donations will be going to the BRI to fund this last-resort treatment.

Thank you for your kind donations and consideration.