Wednesday 12th October 2016
So today, I attended an appointment at the Oncology Outpatients department with my mother and husband.
My oncologist is one of the top oncologists in the country and he has been absolutely fantastic in exploring any and all options for me. He described me as 'remarkable'; not just for enduring the treatments and emotional strain, but because I've responded so well to other treatments in the past.
The last line of treatment I was taking (Lapatanib- the targeted drug for HER2 positive breast cancer & Capecitabine which is a chemotherapy drug) had halted (and even reversed) the march of the cancer for over 2 years, which was above and beyond his expectations. This is what spurs me on, to keep fighting, but also confirms what oncologists are now believing - that targeted drugs tend to be more effective when used in combination with other drugs. He described it in layman's terms as 'stopping one pathway for the cancer, but then using another drug to stop the cancer working its way around the blockage'.
He also said that I should 'enjoy being off chemo'. My cancer became active again and in July this year it became detectable in my left breast. I had a second mastectomy to remove the 6 cm tumour and at present have no signs of active cancer. I am due a CT scan before Christmas to see whats happening in my body. The cancer will spread again as I have incurable secondary or advanced breast cancer that spread to the skin and my lung although the last treatment kicked it into remission in these places. Although many would consider my oncologists words a poor choice, as there's little 'enjoyment' to be had, I do take on board his point about not having to endure the side effects of chemo. But for me, the emotional worry of knowing that there's not any effective drugs in my system to halt the spread of the cancer outweighs any physical side effects.
We did discuss 'Phase one' clinical trials, but agreed that this was not an ideal option. He described them as being the next line after trials on animals and are only effective in 5% of cases. It's also how 'elephant man' drugs are discovered!
So when my cancer does start to spread again, he recommends two drugs, in combination. One is 'Vinorelbine' and the other is 'Lapatanib' - one of the drugs I have been taking. The other drug that he recommends in combination with one of those is herceptin. Unfortunately, that is NOT available on the NHS for late line metastatic disease or in combination with lapatanib. But the biggest shock was when he told us the cost of the treatment privately: £10,000 every 3 weeks!!! Our jaws hit the floor. This article goes some way to explain the cost and why some licensed anti cancer drugs aren't available on the NHS.
So this appointment makes me all the more sure that I need to fund raise, now to allow me to continue my fight against this awful disease. I simply can't wait for my cancer to spread again before fundraising as I currently feel well and have the energy to try and raise this enormous amount of money. My children need a mum, my husband a wife and family a daughter, sister, aunt. I refuse to sit and wait for the cancer to take hold without doing something.
Please consider donating to my fight; every single pound can help to keep me here for longer.