Pills, thrills and bellyaches

I feel like I’ve not written anything for ages. It’s not that I don’t want to write, I’m just bored of writing about ‘My Cancer Journey’. I’ve been doing this for 3 years and there’s only so many ways you can report scan results. And the other stuff, well that’s my life now.

I know I’ve made a rod for my own back, because back when it was all new and scary, I reported every minor detail of treatment. Now, if there’s a long gap between posts, there’s an assumption that something must be wrong. I suppose what I’m trying to say is that I no longer feel the need to tell the whole universe, every time something happens. So if I’m not posting, it’s either because I’m busy or I can’t be arsed.

The last few months have been very busy with holidays to Fuertaventura and France, along with all the behind the scenes stuff I’m doing to get Killer Kilts relaunched.

Me on holiday

On the treatment front there is no major news to report, although I did get my ovaries removed a few weeks ago. I suppose that’s quite a biggie.

I was feeling really well before the operation, despite my ‘full-house’ of tumours. My fitness levels were getting back to pre-cancer levels and I was feeling super-fit after a yoga holiday in Fuertaventura.

Despite feeling like super-woman before surgery, it’s taken me much longer to recover than I expected. It’s easy to become blasé about medical stuff (even surgery) when you spend as much time in hospitals as I do, and because it was keyhole, I assumed I’d bounce back quickly. I don’t think I was prepared for how hard the oophorectomy would hit me, physically or emotionally.

I thought I’d come to terms with the fact that I will never be a mother, but getting your ovaries removed makes this pretty damn final. The ovaries are an intrinsic part of being a woman and the hormones they produce affect everything from your menstrual cycle to your mental state. It’s no wonder I’ve been feeling out of sorts.

The oophorectomy should have a positive effect on my hormone driven cancer, however there are lots of potential long-term side effects of a surgically induced menopause, as I discovered on an ill-advised Google search in the days following surgery. These include increased risk of cardio-vascular disease; osteoporosis and cognitive decline including, increased risk of dementia. I’m already on biphosphonates (bone-strengtheners) due to the bone metastases, so that’s the osteoporosis covered. It’s the CVD and dementia I’m worried about. Unfortunately I can’t take HRT because my cancer is hormone driven.

Obviously I’m being optimistic, as these are things that will potentially affect me in later life, but in my post-surgical loopy state of mind, I began to question whether I’d made the right decision. I Googled “can you get your ovaries put back in?” and even contemplated calling the hospital to see if they still had mine. I wondered if perhaps they keep them on ice, for indecisive patients like me? A friend in my support group said she felt the same and was hopeful when she found stories of women who claimed their ovaries had grown back.

I went on holiday less than two weeks after surgery and in hindsight, this wasn’t the best idea. Patients are advised not to lift anything heavier than a kettle for the first few weeks after surgery, so lugging a suitcase around wasn’t ideal. Must remember to check my calendar the next time I get any major organs removed.

I’ve not had any major menopausal symptoms, apart from the odd hot flush, although it was incredibly hot in Paris, so it was hard to tell whether these were caused by the extreme heat or lack of hormones. Now that I’m back in rainy Manchester, I think they were hormonal.

Physically I’m still feeling really knackered and this isn’t helped by the Kath ‘crash and burn’ recuperation plan. If I have a day when I’m feeling okay I tend to overdo it, and end up setting myself back. I went swimming the other day and traipsed around a flower show yesterday, so today I’m completely wiped out. I’ll never learn.

My weekly pill consumption

My fatigue might also be due to the fact that I restarted all the nasties on my birthday last week. My weekly pill consumption is so vast (Everolimus, Exemestane, Metformin, Doxycycline, Aspirin, Hayfever tablets, Statins, Mirtazipine) that I had to buy a humungous pill-organiser to keep me on track. One or two are supplements. (Pomi-T, Coriolus mushroom extract and Fish Oil) but the majority are hardcore pharmaceutical products.

Let’s hope this ridiculous cocktail keeps on working!

PS. I’m reading a really good book by Professor Ben Williams (I mentioned him in my previous post) who cured his cancer with drug cocktail therapy – recommended reading for anyone affected by cancer: Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won’t Tell You About

Tumour Profiling & why I’ve decided to have my ovaries removed

An amended version of this post is available on the Breast Cancer Care Vita Blog: http://www.breastcancercare.org.uk/news/blog/why-i-ve-decided-have-my-ovaries-removed

Tumour Profiling

A while back you may remember I wrote about something called Tumour Profiling.

Current treatment for cancer is very much trial and error. A drug which works really well for one patient, might be less effective in another patient with the same type of cancer. When I was being treated for primary cancer (in the breast) I was on a chemotherapy regime called FEC. This didn’t have great results for me, although I know other women who had a great response.

Since being diagnosed with secondary (metastatic) disease I’ve been on a number of different drugs. Some of these have worked and some haven’t.

Chemotherapy isn’t pleasant and it’s even less enjoyable finding out that the drug you’re on isn’t working. Not only is it a waste of time, it’s an incredible waste of resources. This is where Tumour Profiling comes in.

Profiling of tumours isn’t new and, with breast cancer, certain receptors are already routinely tested: Oestrogen (ER), Progesterone (PR) and HER2 protein. My cancer is ER+, PR+, HER2-ve. The hormone positive status of my cancer means that it should respond to hormone therapies, but so far they have all failed. It’s very likely that the cancer has mutated and developed resistance to certain drugs.

Tumours can develop drug resistance very quickly. This is why patients with secondary cancer often end up in a continual cycle of treatment.

Tumour profiling allows doctors to identify further genetic mutations and to personalise treatment. It speeds up the treatment process and rules out ineffective, potentially damaging treatments.

I’ve had a rough time with chemotherapy from the start. My body doesn’t like being poisoned, so for me this report is invaluable. It means I don’t have to put my body through treatments which aren’t going to work.

The results 

When I received the 23 page report back in November I was a little underwhelmed. It’s hard to reconcile the piddly pile of paper I received with the huge sum of money paid for the test. It didn’t help that I don’t understand much of the report. I’m no numpty, but I’m also not a scientist.

As so many of you generously helped me pay for the test I thought you might want a peek. I’ve attached the main bits here so you can have a nosey and let me know what you think: Tumour Profiling

So was it worth it? According to my consultant, YES.

It identifies a number of biomarkers which correlate with specific chemotherapy regimes. The results also highlight one gene mutation TP53. The tumour protein P53 is a tumour suppressor gene (it prevents cancer), so it’s a really common gene mutation for cancer patients to have. However the TP53 gene mutation can also be inherited (like the BRCA1/2 gene fault) so there is a possibility of a familial link. This is a question I’d like answered as we have a lot of cancer in our family, including mum who had primary breast cancer in 2013. I should add we don’t have the BRCA1/2 gene faults.

The report matches me with ten chemotherapy drugs and ten hormone therapies defined as ‘Agents Associated with Potential Benefit’. I’ve already tried some of these drugs, but there’s a fair few still to get through. One of the drugs that I’m compatible with is a bowel cancer drug Irinotecan, so you can see why the report is a really beneficial tool for clinicians.

The report also has a clinical trials connector which matches the patient with suitable trials. Many trials look for patients who have specific gene mutations or biomarkers. Establishing whether your genes are wonky enough to take part in a trial is a long and laborious process. Having all this information to hand will make it much easier for me to access suitable trials.

What now?

I’m currently on an oral drug called Teysuno, normally used to treat stomach cancer. Teysuno is in the same family of drugs as Capecitabine, the one that made me really ill. It is supposed to be less harsh than Capecitabine but the side effects are beginning to catch up on me now. My face is red, sore and blotchy and I have days (like today) when I feel pretty grotty. I just feel icky, tired and sapped of energy.

In an ideal world I’d like to get back onto hormone therapy as this is much less invasive than chemotherapy, however most of the hormone therapies I’m potentially compatible with are for post-menopausal women. To access these drugs I have to get my ovaries either removed or switched off (chemically). We already tried switching my ovaries off with Zoladex (Goserilin) however this didn’t work, so I’ve decided to take the drastic step of having my ovaries removed (an oopherectomy). This might sound extreme and rather final, however oestrogen is the main source of fuel for my disease, so it makes sense to cut off the supply.

What I have to look forward to

As many of you know I’m also planning on relaunching my business Killer Kilts very soon. It’s been incredibly frustrating, as the ups and downs of treatment make having a normal life incredibly difficult, but I’m really determined to get things going. I’m slowly getting there but I might have to delay the relaunch until after surgery.

Obviously I’m hoping I will make loads of money, but the most important thing for me is that it will give me something else to focus on instead of cancer. I’m also hoping to have a big trip later in the year (when I make all this money) and plan to visit friends and family in Australia, New Zealand, Vancouver and New York.

I just want to say thanks again to everyone who helped me pay for the Tumour Profiling report! If anyone is interested in finding out more, or wants to know how to go about arranging the test, just drop me a line: killerkath@outlook.com