Archive for the ‘Round Three’ Category

This is my latest blog post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/starting-treatment-secondary-breast-cancer-brain

There aren’t many areas of my life not affected by cancer. Recently it invaded a whole new territory.

At the start of February, I was diagnosed with brain metastases – meaning cancer cells have spread to the brain. My most recent CT scan showed that the cancer has also progressed in my liver and lungs. In short, the drug I’ve been on since November hasn’t worked.

Disease progression of any kind is bad news. However, brain metastases, or mets, are the biggie that everyone with secondary cancer dreads.

The brain isn’t routinely scanned, because if cancer cells have spread to the brain this usually causes symptoms. I had no major symptoms. I’d had the odd headache, but who doesn’t? It was more paranoia that made me request an MRI scan. Unlike CT body scans, the results from a brain scan are often given on the same day. Instead of the dreaded weeklong wait for results, ‘scanxiety’ is confined to the 10 minutes after the scan.

I was cheerfully optimistic about the results. But when the radiotherapist delivered me a (never offered before) post-scan cup of tea, along with an ominous dose of ‘side head’, I knew it wasn’t good news.

Starting radiotherapy

The last month has been a whirlwind of appointments, planning and finally treatment.

Sometimes secondary breast cancer in the brain can be treated with surgery, but it’s most commonly treated with radiotherapy.

I was offered a type called stereotactic radiotherapy.

Stereotactic radiotherapy (also called Gamma Knife) is very precise and delivers high-dose radiation to the tumour, causing less damage to surrounding tissue. Each area is usually only treated once.

The first stage of treatment is planning. During this appointment, a plastic mould is made of the head and further scans are carried out to confirm the areas to be treated. Having my head set in molten plastic is one of the strangest experiences I’ve ever had. The mask is clamped to the bed to restrict movement even further. Not being able to talk or move for 30 minutes is incredibly difficult and I was dismayed to discover I’d have to wear the mask for even longer during treatment.

I had my denial head on (‘What cancer?’) for my first lot of treatment. My ‘just pretend none of this is happening’ strategy works quite well most of the time, but it proved ineffective when my head was screwed to a table for two hours. Cue panic attack.

Stereotactic radiotherapy is incredibly precise, so it’s critical that everything is correctly positioned. I must have been gurning when they made the mask, because my chin proved to be a problem and it took a long time to get everything correctly positioned.

Once everything was correctly aligned, including problem chin, treatment began. I’m not going to lie: this was not a fun day out, although I don’t make things easy for myself. Worried that my breathing was causing too much movement, I tried to restrict and hold my breath. Add to this a pint of green vegetable juice and nausea and you’ve got a toxic cocktail. It was like being tied to the plank of a very wobbly ship with a colander attached to my head.

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I had the mask on for a full two hours which was really difficult. I was reassured that it can be removed at any time, but removing the mask can prolong treatment because everything has to be realigned. Given the options I decided to plough through without a break.

Two days later I went through it all over again, but this time I was prepared. For my second appointment I asked for sedatives and was also offered stress-relieving squeeze balls. Both of these really helped relieve my anxiety. It’s a long time to be confined in such an uncomfortable position, so I would recommend anyone having this treatment to consider using some relaxation techniques and to request sedatives if necessary. And don’t try to hold your breath like I did.

You can bring your own music although I don’t necessarily think this is a good idea. Anyone who’s had an MRI scan will appreciate what I’m talking about. Stereotactic radiotherapy isn’t as noisy as an MRI, but having your head clamped in a vice for two hours is a sure fire way to ruin your favourite album. I didn’t bring any of my own music and was subjected to 80s classics. Club Tropicana will never sound the same again.

As traumatic as it was, I’m really glad I had the treatment. Stereotactic radiotherapy is a relatively new treatment and it’s not offered in many places, so I feel really fortunate to have been able to access it. I’ll find out in a couple of months if the treatment has worked and I’ll now be having three monthly MRI scans to monitor my brain.

Access to drugs

This week I also started a new treatment, a targeted drug called everolimus.

Everolimus was a drug earmarked for removal from the Cancer Drugs Fund in January. Both everolimus and another breast cancer drug eribulin have recently been reinstated by the Cancer Drugs Fund, which is great news for women with secondary breast cancer in England. However, access to cancer drugs is still not consistent across the UK.

Another breast cancer drug lapatanib has been rejected for use by both the Cancer Drugs Fund and the Scottish Medical Consortium, making it unavailable to new patients across the UK.

And while some breast cancer drugs are available in England through the Cancer Drugs Fund, only everolimus is approved for use in Scotland. Access in Wales and Northern Ireland is even more complicated.

It’s a shameful state of affairs. We hear news reports that these drugs give patients only an extra six months, as if we’re not worth the effort. But some of these drugs can and do work for years. Many of my friends with secondary breast cancer are a testament to this.

These drugs don’t just keep us alive, they allow us to live and they should be available to all, not just those fortunate enough to live in the right postcode.

With the upcoming election you can email your local MP and encourage them to put breast cancer on the agenda #stopwomendying.

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

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

 

 

 Gelclair & The Secret Garden

Posted: April 6, 2015 in Round Three
Tags:

This weekend I have mostly been sat in hospital waiting rooms and hunting for a product called Gelclair.

I’ve got a very sore mouth and the elusive Gelclair is one of the only things that soothes it. God knows what’s in it, but it bloody works. Diflam ain’t got nothing on Gelclair.

Gelclair I love you

The only stash I had, donated by a generous friend, ran out last week and it’s been Mission Gelclair ever since.

My Gelclair quest has caused some drama over the last few days. I had a Mary and Joseph moment and nearly sobbed when I was turned away from the umpteenth pharmacy when they said “no Gelclair here!”. My first trip to out-of-hours also nearly ended in tears, when I was handed a prescription for Bonjela.

Anyone who’s been through chemo will understand how painful & debilitating ulcers can be, and how pointless and ineffective Bonjela is. As one doctor later commented, it’s for babies.

After waking on Sunday with an all over body rash and an ever deteriorating mouth, I was sent back to out-of-hours and finally admitted to hospital yesterday evening.

The mucous membrane of my mouth has eroded in places leaving gaping sores and ulcers. The pain is excruciating so I’ve been on heavy duty painkillers. Eating and drinking has become a painful game of “avoid the ulcer”.

My white blood cell counts are low, not low enough to be neutropenic, but low enough to have my own room. There are some bonuses to having a chemo damaged immune system.

I’ve been keeping myself busy with some colouring in. I treated myself to Johanna Basford’s Secret Garden. Here’s my first attempt (note the hospital blanket frame):

It’s very therapeutic, although it doesn’t do much for mouth ulcers.

The Gelclair is finally on order and I’m told it should arrive Tuesday. I just realised that’s actually tomorrow….never have I been so excited about receiving some oral mouthwash!

Until then it’s back to the colouring.

In the news

Posted: March 25, 2015 in Round Three

I haven’t written anything for my blog for ages. There’s a been a few ups and downs with treatment recently which have taken precedence over everything else. I’ve got my blogging head back and will be posting an update soon.

In the meantime, I’m in a piece in the Guardian today relating to Angelina Jolie’s decision to have her ovaries removed:

http://www.theguardian.com/society/2015/mar/24/women-angelina-jolie-choice-surgery-ovarian-cancer

And I’m going to be on the BBC World service this evening at around 6.15pm talking about the same thing…..me and Angelina we have sooooo much in common!! 😉

Here’s the link to the programme in case you missed it:

https://www.dropbox.com/s/lkl0bx9p60y78pm/World_Have_Your_Say_-_Angelina_and_Clarkson_p02m7n65_default%20%282%29.m4a?dl=0

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’s my latest Vita Blog Post: http://www.breastcancercare.org.uk/news/blog/i-m-living-cancer-not-fighting-war

As a cancer patient and blogger, words are something I obsess about. A couple of weeks ago, in the midst of last-minute holiday preparations, I got a call asking if I’d be interested in going on BBC Breakfast to give a patient’s perspective on the language used around cancer. Never mind that I hate public speaking and had less than 24 hours to prepare, this is a subject that really interests me, so I accepted the challenge.

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The discussion got off to a bad start when I was mistakenly introduced as someone with ‘terminal’ cancer. This was a simple misunderstanding. However, it highlights the importance of using appropriate language with cancer patients. The word terminal only applies when patients have run out of treatment options and are reaching the end of life. I have secondary, not terminal, disease.

The discussion I took part in refers to recently published research which highlights that the use of military metaphors (like bravery, fighting and battling) can be damaging to patients with terminal cancer. Although research in this area is long overdue, the findings won’t come as a surprise to those living with the disease.

Mind your language

I first became aware of the peculiar language around cancer after my primary breast cancer diagnosis in 2012. My curiosity was tweaked by the well-intentioned messages of support I received from friends and family.

Suddenly everyone had an opinion on how I should tackle the disease. I should eat less cheese; eat more broccoli; juice 13 times a day; eliminate stress; restore my pH balance; and deal with those unresolved emotional issues, undoubtedly (I was told) the root of my disease. But more than anything I should fight, I should battle and wage war on those renegade cells intent on killing me.

The message was clear: I had a battle ahead, but if I adopted the right attitude, my bravery and courage (and let’s not forget positive thinking, the most powerful weapon of all) would be rewarded with the ultimate victory, survival.

To begin with I played by the rules. When my target was a tangible one, I found the language of battle empowering. As I quaffed my daily juice I imagined the cancer cells running for cover: ‘Quick run, she’s drafted in the broccoli!’ I pounded the pavements and began a daily yoga practice. Every stride and stretch brought me another step closer to victory.

I developed an inner warrior, as suggested by one of the numerous ‘beat cancer’ books I read. Mine was Ellen Ripley, the shaven-headed heroine from the Alien films. I envisaged her blasting the cancer cells into submission. I thought I’d found the perfect ally until my brother pointed out that the aliens in the film have a tendency to erupt from victim’s chests. This parallel was a little too close for comfort.

I ditched the inner warrior and as someone now facing a lifelong ‘battle’, the language of war no longer sits comfortably with me.

Bravery

When you’re a cancer patient, you get used to people commending you on your bravery and courage. But I’ve always felt awkward about wearing these badges of honour.

Bravery implies strength and fearlessness, but labelling people in this way puts added pressure on them to be good and uncomplaining patients. In the ‘battlefield’ of cancer, fear, anger and depression (normal reactions to a cancer diagnosis) are viewed as weak and negative traits, perhaps even cowardly. You’ve got to ‘be strong’ and you ‘have to fight this’.

Fighting

I consider myself both strong and resilient, but when you’re living from scan to scan you realise that mental strength has no effect on the result. It can be quite demoralising continually being told you can fight this, when actually the weapons are in the hands of the doctors treating you and the researchers working on the next generation of cancer drugs.

This might sound like I’ve resigned myself to fate, but I take a very active role in my treatment. I look after myself physically and mentally and I’m always aiming towards a cancer-free future. However, cancer is an unpredictable and pernicious disease. It takes more than attitude to fight it.

Losing the battle

Like many before me, I believed that my fighting spirit and positive attitude played a part in me beating the disease. But my cancer returned, not once but twice. I now face a battle which will never end. Is it my fault that the cancer came back? If I lose the battle is it because I didn’t try hard enough?

The implication of guilt and failure is a common sentiment among those living with secondary and terminal disease. As if it’s not bad enough living with a life-limiting illness, we live under the shadow that we may have failed in some way.

Perhaps if I hadn’t eaten that cheese sandwich; if I’d juiced 13 times a day; if I felt more ‘blessed’ (cancer is a lesson, don’t you know?) and less stressed about having this horrific disease then it might not have come back. Perhaps I should have tried harder. I’ll never know, but these are sticks I and other cancer patients beat themselves with.

A fighting spirit gives rise to hope and optimism and there’s definitely a place for these for patients at any stage of treatment. However, military metaphors offer little protection for those on the front line and we need to think of better ways of talking about cancer. It’s a disease, not a war.

My attitude today is more one of hope and optimism than GI Jane. Some days I struggle. Some days I cope. I accept the treatments offered and manage the side effects to minimise the impact on my life. I live to the best of my ability with a disease for which there is no cure.

I am living with – not dying of – secondary cancer.

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

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.