Mother's battle for cancer drug
LORNA MARSH A Norfolk mother is facing a race against time as she fights to get hold of the one drug she believes will allow her to see her daughter grow up.
A Norfolk mother is facing a race against time as she fights to get hold of the one drug she believes will allow her to see her daughter grow up.
Julie Truss's husband and 13-year-old daughter along with the rest of her family are battling to raise enough funds for the treatment that they hope will buy her more precious time with them.
Mrs Truss, of Ingham, was aged 37 when she was diagnosed with an aggressive form of breast cancer and, following radiotherapy and an operation to remove the tumours, was given only a year to live.
Four years later and after the cancer spread to her bones and skin she has managed to stave off her grim prognosis through a combination of treatment, including Herceptin, and her own steely determination.
But now the disease has spread to her brain, defying treatment with Herceptin, and Mrs Truss feels time is truly running out.
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The only thing she believes can help is a powerful new drug branded a wonder cure in the US where it has already been licensed.
She has managed to privately buy Lapatinib, sometimes known as Tykerb, from a doctor overseas and it has already had a dramatic effect in halving the tumour marker levels in her blood and shrinking the lesions on her brain.
However the drug has not yet received its licence for use in Europe yet, already suffering one delay that has scuppered Mrs Truss's hopes to continue to afford it herself before it becomes available through the NHS.
At present it is only available in the UK through experimental trials or on exceptional compassionate grounds, something which most PCTs will not consider.
Mrs Truss was told that she is not eligible to take part in trials as she has so far refused to have chemotherapy, one of the pre-requisites, and has been turned down by consultants on compassionate grounds.
Now her only chance is to fund the treatment herself - at a cost of £2,000 a month - but she was hoping she would only have to do this for a short while as it was scheduled to get its licence this month. But that has now been delayed until March 2008 after which it will have to undergo another process to ascertain its cost effectiveness for PCTs in Britain.
The unexpected delay has left her and her family to foot the bill and a massive fund-raising campaign is now underway headed by her daughter Francesca Howard and husband Steve Truss who will be undergoing a bike marathon next month.
Mrs Truss said: “It's so frustrating, I just feel I've been stumped at every hurdle and it's not just me, there must be thousands of women who could benefit from this treatment.”
Francesca said she would do anything to help fund her mother's treatment and gets angry about the situation the family are in.
“I really need her,” she said.
Another hope is that recent brain scan results might improve her eligibility for gamma knife surgery - a highly precise radiation treatment - as an alternative to the full brain radiation she was offered but turned down because of its risks.
A spokesman for Norfolk PCT said that despite Mrs Truss not being eligible for gamma knife surgery previously health officials would consider reviewing her case subject to consultant's recommendations based on the new scan results.
Andrew Stronach, spokesman for the Norfolk and Norwich University Hospital NHS Trust, said: “Our oncology team strive to do everything possible for our patients but in some cases the patient's condition is such that the options available are limited.
“Mrs Truss's case has been managed by oncologists both in Norfolk and at the Royal Marsden Hospital in London and she has been offered the recognised and evidence-based treatment for her clinical condition. Mrs Truss has exercised her right to refuse some of that treatment.”
For details of the Truss family's fundraising campaign visit www.insightmarinesurveyors.co.uk/index.php?subpg=information