Patients might have to go to court to get cancer drugs – but afterward how many quietly come off these same drugs because of horrendous side effects?
Hailed as miracle drugs when first developed, research has proven that patients on these hormonal cancer drugs have a far longer life expectancy rate. But these patients were monitored during clinical trials, which meant often having a specialist nurse coming to their home helping them handle side effects. Once drugs are approved, this stops.
Recent says a high proportion of patients now coming off the new long-term hormonal cancer drugs, before the end of the five-year cycle Reports speak of the miracle of extending a life cycle with the aid of a new drug, but don’t highlight the cost to a patient’s general well being.
What isn’t widely reported is that many of these drugs have violent side effects. If patients eventually decide they can’t handle these, they come off the drugs, rather than complete the course. I had to threaten to take my PCT to court to obtain Aromasin, but every time I scratch an unbearable itch from dry skin, or peel off another skin layer, I realise these drugs exact a price.
Reports produced by Dr. Louise Atkins and Dr. Lesley Fallowfield in Sussex and Thomas I. Barron and others at Trinity College Dublin say, “the rate of non persistence with therapy is higher than previously reported. ….. (raising) concerns about persistence with other oral hormonal therapies for breast cancer and oral antineoplastics in general. Oncologists need to identify those at risk of non persistence and develop strategies to combat this barrier to treatment success”.
Both reports indicate around 50-55% of patients coming off these drugs, even though they may have had problems obtaining them in the first place.
Oncology nurses are reluctant to suggest ways to help, particularly when it concerns skin or eyes. Hence patients decide enough is enough, and stop.
As a breast cancer patient, a week after starting Tamoxifen, I woke with bloody sheets and blistering, peeling skin. Eventually steroids cleared this up – then another bout happened a month later. Side effects had targeted my skin, from hair to nails; as my Oncology Nurse peeled off another skin layer, sternly said she couldn’t recommend commercial products to help (and drugs aren’t commercial?!).
In front of a crowd of giggling students, the senior Dermatologist at my local hospital told me, “it’s your age”, then swept out before I could ask why? After my Oncology Specialist had sold me the drug with statistics, I refused his “do you want to come off Tamoxifen?” offer, but used journalist contacts with major skincare companies such as Clinique, Estée Lauder, Clarins, etc. to ask if they knew what was happening?
Yes, their research chemists knew all about these problems. In fact for years had been trying to get doctors to work with them, to help patients, particularly those with skin problems. But these companies (making millions profit a year) are regarded as ‘commercial’. Drug companies (making billions profit a year) are not seen in the same light.
As soon as my doctor said my skin was clear, they would send me products for the dryness, and – even more importantly – these would help prevent a recurrence of painful and frightening symptoms. So when things cleared up I became a test bed for lovely skin products.
Drug companies know these side effects exist, although AstraZeneca waited until last year to include carpal tunnel syndrome amongst the list of side effects for Arimidex. But these companies are keen to get their products approved by NICE; once this happens, they know they can sell the drugs, so don’t worry about helping patients suffering everything from horrendous hot flushes to blindness (usually only temporary).
In France doctors work with companies such as La Roche Posay to produce skincare specially to counter these hormonal drug side effects. Their post cancer survival rate is best in the world.
In Britain there is a lack of any desire to promote anything except the drugs – and possible side effects are brushed under the linoleum. Hence our position at the bottom of the European post cancer survival table.
Here, patients aren’t looking for miracles, but would welcome a ‘shopping list’ of products that might help them stay on the drugs. To try and spread the word, forums and websites talk about ‘having fun after cancer’, set up to tell patients that the products that will actually help are good skincare, and massage.
If doctors don’t take time to help patients handle side effects, more expensive hormonal drugs are going to get flushed down the loo, as patient keep quiet they have opted to stop.
Early Discontinuation of Tamoxifen: A Lesson for Oncologists
Thomas I. Barron, MSc 1 *, Roisin Connolly, MB 2, Kathleen Bennett, PhD 1, John Fely, MD 1, M. John Kennedy, MB 2
1Department of Pharmacology and Therapeutics, Trinity College Dublin, Trinity Centre for Health Sciences, St. James’ Hospital, Dublin, Ireland
Intentional and non-intentional non-adherence to medication amongst breast cancer patients. Dr. Louise Atkins and Dr. Lesley Fallowfield, Psychosocial Oncology Group at Sussex University.