Talk

Flip

MNHQ have commented on this thread

1 2 3

MNHQ have commented on this thread

Guest posts

Guest post: "The life-prolonging cancer drug I need is being withdrawn from the NHS"

69 replies

KiranMumsnet · 23/01/2017 14:42

For the last 15 years I’ve been paying into the NHS through my taxes. I wanted health security, so I didn’t mind. I never thought my illness would be so expensive that the NHS wouldn’t be there for me. I never thought I’d feel guilty for the amount I was costing others to stay alive.

Two years ago, I found a lump in my breast while breastfeeding. The father of my children assured me it was probably nothing to worry about. My GP said the same. Then I got the referral letter to a hospital in London, and it said my appointment was in the Cancer Centre. I can still feel the chill that went through my body when reading those words. Surely it couldn’t happen to me.

I was a young mum with two small children. I was a hard worker, maintaining a career as a writer while spending quality time with my kids. I exercised and ate well.

But it did happen to me. It was one the most aggressive kinds of active breast cancer, known as HER2+. It was also stage four - meaning incurable, inoperable, terminal. The registrar delivering the news said my life expectancy was only another two to five years.

Then a hospital consultant told me there was hope I could live longer. Beyond chemo, there were targeted drugs that could keep me alive for years. The first drug combination was Herceptin and Pertuzamab. Then once my body becomes resistant to those, I’d move on to Kadcyla. Then once that stops working, there’s Tykerb. This assurance cushioned the blow ever so slightly. Maybe with three lines of treatment, I’d be able to stay alive long enough to see my kids become teenagers.

I did chemo. I fasted two days before and two days after to get the maximum benefit. I vomited. A lot. I lost my hair. And I did it while working and being a mum to my kids. I also spent hours a day cooking specialised meals that would feed me without feeding my cancer. After work, I juggled laundry, shopping, exercise and tons of research on off-label medicines and supplements. I got through it. And I made it to remission.

Now I have Herceptin and Pertuzamab every three weeks. I've survived two years and I feel pretty normal apart from all the pills I take. The death sentence the doctors gave me at the beginning of this journey is giving way to increased hope, but it still hangs over me.

That’s mainly because the National Institute for Care Excellence (NICE) withdrew Tykerb from the NHS last year. Now they have removed Kadcyla. If my cancer comes back, as my doctors have warned me it will, there will be nothing more the NHS can do. If I was living anywhere else in Europe or in America, I’d be able to raise my kids, but not here. Here, it’s goodbye.

I've sought a special vaccine treatment in Germany to try to improve my chances of long-term survival. If the vaccine works, I may not need Kadcyla. I try not to think of what will happen if it doesn’t.

NICE has taken away Kadcyla because of cost. The manufacturer, Roche, has lowered the price but it’s not enough for NICE. At the moment the drug costs around £38,000 for six months of treatment. That’s more than standard chemo, but it's not as outrageous as it may sound.

The NHS covers numerous expenses that aren't life-saving: multiple rounds of IVF at around £5000 each. Over £7000 for a breast augmentation. It will cover a nose job, a chin implant, a tummy tuck, and a face lift. I've paid into the NHS all my working life, and I don't expect it to cover anything extraneous. I just expect it to be there for me when it's life or death.

We are petitioning NICE and Roche to find a compromise to keep Kadcyla available. On 23 January the petition closed, with over 115,000 signatures – a clear demonstration of the strength of public feeling about Kadcyla. Myself and other women in the UK who have put their trust in the NHS and now find themselves being left high and dry need them to reach an agreement.

OP posts:

Report

Ouriana · 23/01/2017 16:47

This reply has been deleted

Message withdrawn at poster's request.

carriemumsnet · 23/01/2017 17:08

Sending you all the love and luck in the world. xxx