Kelly is a mum, dog lover and friend - she is more than a secondary breast cancer patient. Here, she shares her experience of taking Kadcyla and why no one can put a price on a life.

Wednesday 14 October 2015      Guest blog
Kelly with her three sons and husband, Steve

It’s Tuesday 15 November 2011, my youngest son’s third birthday. I’ve got the day off work, so has my fiancé Steve, but we’re not shopping for cakes and candles.

No, today we have dropped our little boy at nursery for his party without us and dropped our two older boys at school whilst we spend the day at the breast unit. A day of examinations, ultrasounds, mammograms and biopsies.

You see, two weeks before I’d been to my GP with a lump in my left breast, a lump that was quite high up in my chest not in the fuller part of my breast and had become more painful not something I associated with breast cancer. My GP referred me to the breast clinic although tried to reassure me that as I was young and had no family history I probably had nothing to worry about.

By 6pm that evening my whole world had been ripped apart! The exact words are still a muddle to this day. Breast cancer, grade 3, aggressive, multifocal, mastectomy, chemotherapy, radiotherapy. The worst had happened; I had a breast cancer at 30 years old!

How do I begin to tell a 12 year old, a 9 year old and a 3 year old that Mum has got cancer?

The worst was yet to come

Just as I was starting to feel more focused and a little more prepared for what lay ahead of us, even joking about being a bald bride! I was not prepared for what came next. An MRI scan had shown that the cancer had already spread to my liver. Secondary breast cancer, Incurable breast cancer. How? I wasn’t ill, other than a lump in my breast I had no other symptoms.

As I broke down in tears, terrified of leaving Steve alone and not being around for my boys I felt physical pain, absolute heartbreak. I was to start a course of aggressive chemotherapy in the hope of reducing the liver mestasis and Herceptin to control it for as long as possible.

Treatment was to start two days after Christmas day. I had prepared myself for gruelling treatment in hope of a ‘cure’ from primary breast cancer but now with a secondary diagnosis I couldn’t face a lifetime of harsh treatments with no end, no cure.

My life to be assessed in three month periods, the repeat scans to become the norm, my life to be crammed into a full diary of appointments. Christmas eve, something changed.

As I put the boys to bed I vowed that cancer may take my breast, my hair and inevitably my life, but that day was not today and it would not be taking my Christmas! It would not define me or my family!

One year in

By November 2012 I had finished chemotherapy and all the delights that came with it (thank God!) - constipation, nausea, fatigue, joint pain, weekends in bed whilst Steve went out with the boys and a general feeling of being hit by a truck!

I was having Herceptin every three weeks, I’d had a mastectomy and reconstruction. Steve and I had finally got married. I’d been to music festivals. I felt well.

My scans showed otherwise. Progression in my liver. Herceptin alone was not controlling the disease and I needed a change of treatment. I was devastated.

I wanted to enjoy life, I wanted to enjoy my family, I didn’t want my life to become just an existence on endless harsh treatments to prolong my life. I was a mum to three lively boys, my life was supposed to be about camping, weekend walks, trips to the cinema, homework and bike rides.

Along came Kadcyla

My oncologist gave me some information to read about a clinical trial for TDM1, later to be known as kadcyla. An IV infusion every three weeks. This was a trial; I didn’t know what to expect.

I had nobody to compare notes with and no real idea of what side effects to expect, I just had to put my faith in the team looking after me.

Taking part in that trial was the best decision I’ve made in the last four years.

In January 2013, I left the hospital after my first treatment wondering what to expect from the weekend ahead. I stocked up on every drug I could think of just in case - constipation tablets, diarrhoea tablets, anti-sickness tablets, pain relief tablets. You name it, I had it ready! I never needed it! I’ve never experienced much more than occasional stiff joints and some tiredness.

Two months into treatment, I was taking my boys on a holiday of a lifetime to Florida - two whole weeks of parks, rides and sunshine. I felt amazing and that feeling continued when I got the first scan results on my new treatment. No evidence of disease. Words I would continue to hear at every scan to date. Whilst my cancer will always be incurable, it is treatable.

I’d enjoyed life for over two years on Kadcyla; a drug that had allowed me to see my youngest boy start school, my middle son start secondary school and my eldest son collect his GCSEs and start 6th form college. I’ve taught my youngest to ride his bike, enjoyed family camping trips and holidays. Spent an amazing first wedding anniversary in Venice and much, much more.

I had my last Kadcyla treatment in February of this year, I came off the trial whilst I had some other investigations. Whilst I had a treatment break I was monitored closely and am still progression free despite not being on any treatment at the moment. I have Kadcyla to thank for that.

At the back of my mind sits cancer, the bully at the back of the class that gives you a swift kick in the shin whenever the opportunity arises, but what once was an all-consuming fear has now become a fact of life. It just is.

Sometimes it’s difficult not to let the mind wander, to spend 12 weeks between scans hoping that if a party in my liver is happening it’s only a sedate dinner party.

No more cuts

A diagnosis of breast cancer is devastating, a diagnosis of secondary breast cancer is heart-breaking, knowing there are drugs available to manage this disease but aren’t accessible because they are too expensive is inhumane.

How can a price be put on a life? Money doesn’t compare to the memories I’ve been able to make with my boys, the laughs we’ve had as a family and the love I’ve shared with my husband. I think my husband and sons, my parents, my family and friends will feel I am worth the cost.

Secondary breast cancer patients fight an emotional and psychological battle every day, we shouldn’t have to fight for the best drugs too. The best drugs should be available at a cost that the NHS can afford.

I am Kelly, 34 years old. Mother, wife, daughter, sister, aunty and friend. Dog lover, music lover. More than just a cancer patient.

Sign our petition

From November, thousands of new patients in England will be denied access to Kadcyla on the NHS, because it costs too much.

We’re calling on Roche, the drug’s manufacturer, to lower their price for Kadcyla so that it’s affordable to the NHS.

Please sign the petition and tell Roche that they must lower the price. We only have a matter of weeks to convince them to act.

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