Posts Tagged ‘Zoladex’

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

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

 

 

Here is the link to the next exciting installment of my Vita Blog, also posted below:

http://www.breastcancercare.org.uk/news/blog/flat-batteries-nipple-tattoos

Flat Batteries

This week I, my laptop and my mobile phone have all had flat batteries. This is a problem when you have to write a blogpost but thankfully the laptop repair man works 24/7 and he came to my rescue over the weekend. He couldn’t give me a new battery, but he fixed the laptop. Laptop

Fatigue is a common problem for cancer patients. However, I was lucky that it only really affected me towards the end of my chemotherapy. I power-walked my way through treatment, and if ever I was having a bad day, a steroid-fuelled (they make you go really fast!) stomp would help to clear the cancer-clutter. My lowest points usually coincided with the times when I was too tired to move.

‘Taking it easy’ is an alien concept to me and this got me into some ridiculous situations during treatment. There was the time I thought it would be a good idea to drag my not properly healed backside on a stomp around the village following reconstructive surgery (my right buttock was the donor site for my new boob). Or the time I nearly collapsed, due to chemotherapy-induced anaemia, while out walking in the hills.

Fatigue affects me more often these days than it did during treatment. It creeps up on me unexpectedly and I find it really frustrating that I don’t have the same level of stamina I had pre-cancer.

Those who’ve experienced cancer-related-fatigue will know it’s not the kind of tiredness that can be rectified by a good night’s kip. I wake up feeling tired and things that I would normally find easy really tire me out. I struggled at my Tai Chi class last week and it’s not exactly vigorous exercise.

The problem with fatigue is that you can end up trapped in a boom–bust cycle, something I’m really guilty of. When I feel well and have lots of energy I tend to push myself and, like the Duracell bunny, I keep on going until my battery is flat. Then I crash and burn and I’m forced into recuperation, feeling really frustrated because I’m not able to do anything.

I’m my own worst enemy and I know I should rest (I believe this is something normal people do), but I’m always too busy to take time out. This week we had a moth infestation, so I’ve done about twenty loads of washing and hoovered every nook and cranny of the house. It’s no wonder I’m knackered.

I’m also wondering whether my fatigue is related to the turbo-charged hot flushes I’m having on Zoladex.

Nips ahoy!

Before the fatigue set in, something really exciting happened. In fact, this might be what tipped me over the edge.

I reached the front of the nipple queue! Depending on where you are in the country, you might have waited anything between six months and one-and-a-half years. I was supposed to start last autumn but my recurrence took priority, so I was sent to the back of the queue again. Now, after nearly a year and a half of feeling blind on one side, I have the beginnings of something vaguely nipple-like.

I know reconstruction isn’t for everyone, but for me, getting a nipple is the icing on the cake. After the constant probes, tweaks and scans of treatment, it was nice to have a hospital appointment that was purely cosmetic and actually enjoyable.

I imagine many of you are living with a very different body to the one you had pre-cancer. Maybe you’ve got one breast, no breasts, reconstructed breasts, missing nipples, or perhaps you’re bearing the scars of lumps and lymph nodes removed. Not forgetting the ridiculous hairstyles (or lack of); the hot flushes, the lymphoedema (I call this ‘sailor’s arm’ – think Popeye) and all the other delightful side effects one gets used to both during and post-treatment.

I’ve got one reconstructed breast; one that’s been ‘perked up’; scars from axillary lymph node clearance; a shark-like bite on my right buttock, along with a head of curls that wouldn’t be out of place in a boy band. On a good day I look in the mirror and think it’s not that bad. On a bad day I feel like the neglected patchwork doll you find at the bottom of the toy box.

I’ve yet to dip my toe in the dating world, and I’m not sure what to do about the cancer question. When is the right time to tell someone that you have a body covered in scars, wonky breasts and will probably never be able to conceive? As my friends point out, the legacy of breast cancer will be a good w***er filter.

Aside from my wobbles about how men will perceive my body, the only other time I feel vulnerable is when I’m at yoga. I’m forever hoiking up my vest to check my blind boob isn’t winking at the teacher. I also find it uncomfortable sitting on my bum, as I’ve got a lot less padding on my right butt cheek. I’m sorted with a ‘foob’ for the top half, but I’d love to know if there’s anyone that supplies padding for the posterior.

My first appointment with the tattooist (who I’d wrongly assumed would be a leather-clad, buxom blonde but was actually a lovely nurse) was really good fun. There’s quite a lot of artistry involved in nipple tattoos – you need a good eye. However, I had a wee chuckle when the nurse pulled out a spirit level to check everything was symmetrical.

After marking the position of my new nipple, she then set about mixing colours. This was a lengthy procedure and a Pantone colour chart wouldn’t have gone amiss here. Who knew there were so many shades of nipple?

The combination of anaesthetic cream and the fact that I have very little sensation in that breast meant that I didn’t feel any pain during the procedure. There was a little blood, but I just craned my neck and looked the other way, my default head manoeuvre for anything involving needles or blood. I’ve got another three tattoo appointments and then I’ll have a minor operation to tweak the nipple into shape.

I asked the tattooist if she could do me some flowers as I’m thinking about getting some tattoos on my breasts.This idea came to me while lying on a beach, wondering if I’d ever be happy with my body again. I suppose it’s a way of reclaiming my body from cancer and creating something beautiful in its place. The trend for tattoos among the breast cancer community is growing and I’ve found a few sites that inspired me, in case any of you are contemplating a tattoo. There’s a charity called P.ink in the US which connects breast cancer survivors with tattoo artists and, in the UK, there is the tittoo movement.

I’ve not yet decided on a tattoo design. However, this is on my ‘to do’ list, after Operation Nipple is complete. In the meantime, I might heed the advice of a friend who suggested a more practical solution to both my fatigue and tattoo conundrum: get ‘Take It Easy’ tattooed on my arm.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath