Breast Cancer Treatment Guidelines And Resources

The Downside Of The "Miracle Cancer Drugs"

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 talk about the cost to a patient's general peace and well being.

What isn't widely reported is that many of these drugs have volatile side effects. If patients then decide they can't handle the side effect, 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 realize these drugs indeed have 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 compliance with therapy is higher than previously reported... (raising) concerns about compliance with other oral hormonal therapies for breast cancer and oral antineoplastics in general. Oncologists need to identify those at risk of non compliance and develop strategies to combat this barrier for successful treatments".

Both reports indicate around 50-55% of patients stopping the drugs before the regimen is complete. Even though they may have struggled to obtain them in the first place.

Oncology nurses are reluctant to suggest ways to help, particularly when it concerns skin or eyes. So patients decide they can’t take it anymore, and stop.

A breast cancer patient, a week after starting Tamoxifen, woke with bloody sheets and blistering, peeling skin. Eventually steroids cleared this up - then another bout happened a month later. Side effects had targeted her skin, from hair to nails; as her Oncology Nurse peeled off another skin layer, sternly said she couldn't recommend advertised products to help (drugs aren't advertised products?!).

She also says, "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?”

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 as the same.

Patients can’t seem to get any relief until their skin heals. Then they become testers of plenty skin crèmes. In the mean time, when they really need relief, they have to "suck it up."

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 only set to get their products approved by NICE; then they know they can sell the drugs, so don't worry about patients suffering everything from hot flushes to blindness (usually only temporary).

In France doctors work with companies to produce skincare specially made 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 - possible side effects are ignored. With our position at the bottom of the European post cancer survival table.

Patients aren't looking for miracles, but would welcome a list of products that might help them stay on the drugs. To spread the word, forums and websites talk about 'having fun after cancer', 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 toilet, as patients who have stopped treatment often don't speak up.