I would love to be writing you a more positive post but unfortunately, the bad news keeps on racking up. My lymph node surgery in February went to plan but the results as ever weren’t good. Seven out of 19 nodes removed were positive for cancer – a sign the previous 4 months of chemo hadn’t really cut the mustard. Still, my surgeon was happy he’d done as much as he could and a subsequent CT scan a couple of weeks later showed no new nasty surprises. Though troublingly the spot on my hip that they’ve been monitoring had grown slightly. Still, no reason to be reaching for the life boats just yet.
You, Me & the Big C Podcast
I was back at work five days a week and having so much fun doing our new You, Me & the Big C podcast, with my beautiful and fabulous new friends Deb and Lauren. I was doing all my post-surgery stretches but after a few weeks became aware that my breast on the latest surgery side was a little swollen. Still no bells started to ring. Then it started to go red. I presumed lymphedema had set in – a very annoying but not dangerous condition where lymph fluid collects after nodes have been removed. But it obviously looked a bit odd as the lymphedema team sent me back to the surgeon. Then the sirens started to wail. Biopsies were taken. His demeanour was serious. Fingers were crossed.
A few days later came the call. I was out at the ice cream farm with Freddie and some of his little pals. My heart raced as I answered it, knowing a phone call did not bode well. Then came the words ‘I am so sorry, it’s bad news. The biopsies have come back showing the same cancer is back and is in the skin’. I watched my little Freddie innocently playing away in a tyre in the barn and my heart broke for him. I scooped him up and dashed home and then had to break Steve’s heart with the news that my cancer was now metastatic and therefore incurable.
I met with my surgeon who examined the spread of the mets on the skin of my chest and advised I headed to the oncologist to get some systemic treatment before considering any surgery. Any kind of surgery with stage 4 multiple mets is a bit like slamming the stable door after the horse has bolted. There has been a lot of waiting. First for a grim-faced meeting with the oncologist. I turned up a little hopeful, thinking at least by the time we left we’d have a plan. Even if that was just to extend things for a while. Action always feels good. But he explained – as if I didn’t know it all too well already – that my cancer hasn’t responded well to chemo thus far. And with chemo there’s usually no magic button, we won’t suddenly find one that smashes it. So I was told my best chance for extra time is with treatment with a ‘novel agent’, I had to ask what that was as images of James Bond flashed through my head. It basically means a brand-new drug, something new and innovative that is in the early stages of trials and development. I was referred to the Clinical Trials Unit. More waiting, all the while watching and feeling the cancer spread.
Frontier of science
So now I have turned lab rat. I am in the hands of the incredible team on the Christie Clinical Trials Unit. They work at the very cutting edge of cancer treatment, looking to make those those little discoveries about new drugs that may lead the way forward in cancer treatment for the future. I am lucky that there are some options for trial treatments. They have very strict criteria for recruitment and I have gone through a fairly thorough screening to make sure I am healthy enough (ironic!) to have the treatment. My base-line CT-scan did not make for pretty reading but here is where we are. I have extensive skin metatases in my left breast and chest, mets to the nodes above the collar bone on the left side. I have a tumour in my liver and a couple of suspicious spots on my spine. I also have a small collection of fluid on the outside of my right lung, called a plueral effusion which is indicative of some cancer starting to lurk there. So that’s skin, nodes, liver, bones, lung. I think even the unscientific amongst you can do the math on that one. Last Wednesday I started on the first clinical trial they have in store for me. If it doesn’t work there are others we can try. It’s an immunotherapy which is approved for other cancers and works by getting your own immune system to start attacking the cancer. Immontherapy is currently considered to be the future of targeted cancer treatment. It works well in some types of cancer but not in breast cancer. I am taking it with a new trial drug that is designed to try and make it more effective. It is a Phase 1b trial so very early in the process and I feel an odd sense of pride that I am one of fewer than 150 people worldwide who will test it. If it doesn’t help me then I hope the data I provide will at some point in the future help others in the same position.
Living on a prayer
I am five days in to a strict protocol of infusions and tablet taking. I am being closely monitored for any side effects. I feel a bit like a grenade with the pin out…just waiting for some odd sensations to appear. Tick tock. I am in a little pain from the inflammation from the skin mets across my chest but otherwise feel pretty normal. So we wait for the next scan. That will happen in about 6 weeks. If the cancer has shrunk or is stable that’s good and I stay on the trial. If it’s progressed and grown by more than 20% I cut my losses and try the next one. In the meantime genomic tests are being carried out to determine the genetic particulars of my cancer to see if they indicate any particular treatment being effective. This is the real future of cancer treatment, personalised to the genetics of your tumour which may be totally different to those of someone else with the ‘same’ type of cancer. We are waiting and hoping. Whatever greater power you believe in, send us your collective prayers.