Archive for the ‘Round Three’ Category

Living with uncertainty

Sometimes referred to as the ‘Sword of Damocles’, otherwise known as a pile of crap. This is the terrifying precipice those of us with metastatic disease occupy much of the time.

If you’re living with metastatic disease, you could have 6 months, 6 years or even longer. There’s no way of knowing.

A common reaction to those dealing with this uncertainty, is that “you might get run over by a bus tomorrow”. It’s always nice to be reminded that, as well as having a life-limiting disease, you’re still at risk of being run over by a bus, but try living with a demonic bus driver following you around night and day. He chases you through your dreams. He’s there revving his engine when you wake in the morning.

When the drugs are doing their job and everything is stable, you might get some respite, but he’s never far from your door.

My demonic bus driver has been on full throttle since November, when I found out that the EE combo (Everolimus/Exemestane) is no longer working. Since then it’s been an anxious time of waiting for treatment decisions to be made; finally starting a new drug in December (low dose cyclophosphamide), only to find out last week that this drug probably isn’t working either.

It can be hard to function in the ‘normal world’ with this kind of uncertainty hanging over you: What drug will they try next? Will it work? What if it doesn’t work? These are the questions that keep me awake into the wee small hours.

I find it difficult to cope with everyday life with this continual background stress. The small-talk people make in everyday life seems so trivial when there’s a real possibility that your days are numbered. When friends and family asked me what I wanted for Xmas, I couldn’t think of anything. There’s no “Gift of Life” on an Amazon wishlist.

Looking well

This might seem a hysterical over-reaction to those around me, when outwardly I look so well. This is one of the strange paradoxes of living with Stage IV. Despite having a body riddled with disease, many of us look healthier than patients with primary or early (Stage I- III) disease.

There are several reasons for this. The main one being, that many of the new drugs used to treat Stage IV are more targeted and less invasive than those used for treating primary disease.

With primary disease, the big guns are drafted in, with chemotherapy often leaving patients as bald as a coot and as sick as a dog. With secondary disease it’s different. Treatment is ongoing and quality of life becomes just as important as controlling the disease. Our medical teams have the difficult job of finding a balance between the two.

Treatment for secondary disease can still make you ill, but if you’re lucky you find a drug that not only keeps the cancer at bay, but which allows you to have a reasonable quality of life. This was the situation I found myself in last year on the EE combo, where I enjoyed around 8 months of stability with very few side effects, aside from the odd mouth ulcer and a little fatigue.

With no visible symptoms of disease and drugs with minimal side effects, it’s easy to forget that you have a life-threatening illness. Denial is a comfortable retreat when everything is stable, but when the shit hits the fan, the demonic bus driver is back with a vengeance.

More recently, physical symptoms have made it increasingly difficult for me to bury my head in the sand. Recent blood tests showed that my liver function is all over the place, I’ve had an increasingly painful left hip and I’ve been having ocular migraines (a completely new symptom).

I’m back in treatment limbo: waiting for scan results; investigating different treatment options and potential trials; as well as looking into ‘alternative’ cancer treatment centres. My situation feels like it’s becoming increasingly desperate.

For this reason, my business Killer Kilts has been put on the back burner for the time being. I have no motivation to run a business when my life hangs in the balance.

My body is riddled with cancer – I have cancer in my liver, my lungs, my brain and my bones – yet to look at me you would never know.  I have days when I’m really exhausted and sometimes it’s hard to gauge how far I can push myself. This weekend I walked up Mam Tor, my first big hill in ages, which felt like quite an achievement for someone with Stage IV.

Looking so well can make it difficult for friends and family to comprehend the gravity of your situation. Breast Cancer is often viewed as the easy cancer to have, but the 5 year survival rate for Stage IV breast cancer is less than 20%. This means 80% of women with Stage IV don’t make it to 5 years beyond diagnosis.

This is evident in the support groups I belong to, where we’ve lost so many girls recently, it’s become quite terrifying. Nearly a quarter of the girls I met at the Breast Cancer Care ‘Younger Women with SBC event‘ in October 2014 have died in the last year: Jane, Carol, Claire, Charlotte, Alison, Emily, Rashpal, Lynn and Dawn. Not only were these friends, they were wives, sisters, daughters and mothers, young women with a future ahead of them. With 12,000 deaths a year in the UK from secondary breast cancer, these women are just the tip of the iceberg.

Losing friends is one of the toughest things about living with this disease. We mourn our friends passing and pray that we’re not next. Ours is a precarious existence, where we cling on to hope and drift around in denial, because the reality is often too horrific to contemplate.

If you’d like to do something to support women (and men) with secondary (Stage IV) breast cancer you can donate to one of the following charities or sign up for one of their campaigns:

Second Hope is a brand new UK charity and the only one specifically for people living with advanced breast cancer. Their focus is on raising awareness, providing support, campaigning and funding research into the disease.

Breast Cancer Now campaigns and funds research with the aim that by 2050, no-one will die from the disease.

 

 

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In the words of my misanthropic hero, Larry David, this week has been ‘Pretty, pretty good‘!

I had some good news which hasn’t quite sunk in yet. I found out the tumours in my liver and lungs have either shrunk or remained stable. I now have one, small but stable tumour in my liver and a few small tumours in my lungs. The bones mets (metastases) are also showing signs of healing.

I didn’t expect to be here now. When I was diagnosed with brain mets in February, things were looking really bad. If you remember, around that time I also had progression in my lungs and liver. I assumed it was the beginning of the end.

I’m not getting too complacent because this can happen with treatment. A drug will work for a while until the cancer becomes resistant, leading to further progression.

But, I feel really well at the moment. I’ve recovered from surgery and the side effects of my current drug regime are minimal. This means I’m getting my fitness back and I’ve felt well enough to go hill-walking over the past three weekends.

The synergism of the Care Oncology drugs with regular treatment (Everolimus and Exemestane) seems to be working really well for me, as I’ve had two lots of good scan results since starting this combination. 

For the first time in a year I’m beginning to feel like a normal person instead of a cancer patient. You’ve got no idea how good that feels.

I’m off to Italy on Friday, but I’ve got lots going on when I return. Killer Kilts relaunch is planned for the beginning of October, I’m doing my yoga foundation with the British Wheel of Yoga and I’m thinking about going back to university. Life is pretty, pretty good!

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

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

This was a post I started a few months ago in the midst of brain-mets mayhem. I didn’t write much around that time, mainly because my brain had been fried and I found it difficult to string a sentence together. Thankfully my brain has recovered, or at least most of it has.  The gamma-knife seems to have affected the spelling part of my brain so please forgive the odd spelling mistake.

I had some goodish news last week. My latest CT-scan results show that the tumours in my lungs and liver have either shrunk or remained stable. Apart from NED (no evidence of disease) or remission, shrinkage and stability are the two words you hope for when you have Stage IV (advanced, secondary, metastatic) disease. But, and there’s always a but at these appointments, I wasn’t surprised when they told me that I now have metastases (or secondary tumours) in my bones. A mixed bag of results, but as a wise friend pointed out, the bones mets won’t kill me.

The build up to these appointments is massive and it’s something you never get used to. When you’ve been in the game as long as I have, you know that a positive attitude has naff all effect on scan results. There’s no point building yourself up for good news. On the other hand, you don’t want to be too pessimistic. Try as you may to box it away, it’s incredibly stressful having this continually simmering away in the background. If you’re anything like me, you spend the last few weeks, pre-scan, being a complete cow to everyone you know.

I hope so...

I hope so…

Unless they’ve got stable disease, the majority of patients with secondary cancer go through this rigmarole every 3 months. Beginning with shock/elation/disappointment at the latest scan results; followed by acceptance of new symptoms or side-effects; leading up to the scanxiety of the next scan.

My recent scan results were a bit of a shock, and not just to me. The last drug I was on (Tegafur) didn’t work, and I’ve had very little in the way of active treatment since my previous scan at the start of February. I worked out that I’d only had 12 days of Everolimus and 2 months of Exemestane before my most recent scan. The Exemestane wouldn’t have worked immediately as I had to restart Zoladex injections (the ovary switcher-offer) in order for it to be effective. Not long enough for either drug to have had much of an impact.

However there’s potentially another explanation for my good scan results.

Following scan-mageddon in February an article in my news-feed caught my attention. The reason this particular article grabbed me, was because it talked about using everyday drugs such as antibiotics to treat cancer. After being given a prognosis of less than a year, the professor mentioned in the article ‘cured’ his untreatable brain cancer with a cocktail of everyday drugs. He recently celebrated 20 years of being disease free.

Fast forward 3 months and I’m now taking part in a long-term ‘study’ at The Care Oncology Clinic in London. They prescribe a combination of ‘dirty drugs’ which I take alongside my regular treatment. In addition to Everolimus and Exemestane I now take the diabetes drug Metformin, a worming tablet called Mebendazole, an antibiotic Doxycyline along with statins.

The so-called dirty drugs work by targeting multiple receptors or cancer-signalling pathways. Metformin for example reduces blood glucose, lowers IGF-1 & is also an mTor inhibitor (like Everolimus). There are many current trials using Metformin as an anti-cancer agent. Mebendazole is believed to slow the growth of brain tumours. Whilst Doxycycline has been shown to reduce tumour burden in breast cancer bone metastasis.

I have now what is known in the trade as a ‘full house’: lungs, liver, brain, bones. There aren’t many places left for the cancer to go. But strangely I feel really well, better than I’ve done in months. My body is responding well to a lower dose of Everolimus and as yet I have no major side-effects, apart from loads of energy. Result.

I had so much energy last weekend I began to wonder if something was wrong. I managed to pack in yoga, circuit training, Killer Kilts photo-shoot and a 12 mile cycle. It’s so nice to have normal energy levels again.

I’ve changed so many things in the last few months (my diet, my drug regime and the additional dirty drugs) it’s impossible to say what exactly is working, but I’m doing something right. Maybe it’s a combination of things. If you want to know more about the Care Oncology Clinic, drop me a line or contact them directly.

http://www.independent.co.uk/life-style/health-and-families/health-news/cancer-drugs-trial-for-when-standard-treatment-is-not-viable-shows-incredible-signs-of-success-9804279.html

http://www.pharmaceutical-technology.com/features/featurebetter-together-combining-therapies-to-slow-down-cancer-growth-4454747/

Going Ketogenic

Posted: April 27, 2015 in Health, Round Three
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During a recent stay in hospital, one of the nurses commented that I look happy and seem to be coping really well. I suppose to an outsider I do. Most of the time I put on a brave face and soldier on because, let’s face it, what choice does anyone in my situation have?

One of my favourite coping strategies is denial, or as a therapist at a Breast Cancer Care event labelled it “temporary sanctuary”. I find my temporary sanctuary in cooking, hill-walking, yoga, meditation, eating curry, sewing and colouring-in (my new favourite hobby). All of these things enable me to put cancer to the back of my mind. Of course this only works during times of stability. It takes something trivial, like shit scan results (okay that’s quite big), and the normally contained panic hits you in the face like a wet kipper, which leads me nicely onto my next subject, the ketogenic diet.

The bad news I received in February (brain mets and progression elsewhere) has elevated my cancer threat level from moderate to critical. No more time for dilly-dallying  around and pretending this isn’t happening. I saw the scans of my brain. This is real. I have cancer. It’s spreading and I don’t like it.

I have been searching for the elusive cure since my primary diagnosis on 1st June 2012. I have researched and ingested every supplement and cancer fighting food known to man. I’ve consumed forests of broccoli, mountains of mushrooms, gallons of green tea and juiced till I’ve turned orange. I have over-dosed on Vitamin D, dabbled with CBD oil, but not cannabis oil cos that’s illegal in the UK, although I’m happy to accept donations from charitable growers. Hell, I’ve even done a bit of Aspirin. There aren’t many things I haven’t tried or at least considered . Lack of evidence usually puts me off, which is why I’ve never wasted any money on Essiac tea or apricot kernels.

By the way if you want to know how to piss off a secondary cancer patient ask them if they’ve ever heard of Gerson Therapy, Cannabis Oil or considered juicing. I can guarantee you’ll be hit in the face with a wet kipper.

I’ve tried numerous dietary regimes. I’ve done and still do intermittent fasting as well as water fasting on a regular basis. After watching ‘Fat sick & nearly dead’ I contemplated doing a 60 day juice fast until a friend pointed out that I’m not morbidly obese, nor is there any evidence that it cures cancer.

I came across the ketogenic diet during one of those best-avoided midnight Google journeys. The ketogenic diet is a low carbohydrate, moderate protein, high fat diet. Cancer cells require higher rates of glucose to function than healthy cells, so the basic principle of the ketogenic diet is to starve the cancer cells of their main fuel supply. It sounds simple but it’s not.

In a typical western diet around 50% of our daily calories come from carbs. Carbs include bread, pasta, rice, grains, potatoes and any product that contains or converts to sugar in the body. In the ketogenic diet for cancer, carbohydrates are limited to around 5%. Typically around 75-85% of calories will come from fat, 10% from protein and 5% from carbs. A useful comparison is the Atkins diet which is similarly low in carbs but much higher in protein.

The keto diet was first developed in the 1920’s when it was discovered that fasting helped control seizures in children with epilepsy. Fasting wasn’t a long term solution and so the ketogenic diet was borne, which mimics the effects of fasting without starving the body. More recently it’s been shown to be effective in treating and managing certain types of cancer. I’ve posted a few links at the bottom of this post which show research into low-carb/ketogenic diets and cancer.

Before you all panic and say “but you can’t stop eating carbs!”, the body can function quite easily without carbohydrates. In fact the body can function without lots of things, we’re just conditioned to believe we need sugary cereal for breakfast, sandwiches for lunch and pasta and rice or potatoes for dinner.

Meringue

When the body is starved of glucose (the end product of carbohydrates), the liver produces an alternative source of fuel called ketones and puts the body into a state called nutritional ketosis. This is an adaptive response, with ketone bodies acting as a back up system when there is limited glucose available, either due to starvation or carbohydrate restriction. This is how our ancestors survived when food was scarce. It’s also how some modern day hunter-gatherers such as the Massai and Inuit Eskimos survive.

There are different versions of the ketogenic diet. The restricted ketogenic diet works by creating an inhospitable environment for cancer cells. It can help treatment in several ways:

1) It lowers blood glucose and insulin. Cancer cells rely on high levels of glucose to function. By limiting the supply, cancer cells are less likely to thrive.

2) Cancer cells are metabolically inflexible so they are unable to metabolise ketone bodies. It’s believed ketone bodies may also have anti-inflammatory/anti-cancer effects.

3) It lowers circulating levels of cancer promoting hormones such as IGF-1 and TAF (tumour angiogenesis factor).

4) It increases free radical damage to cancer cells. Cancer cells have faulty mitochondria and without glucose they have no way of repairing the oxidative stress (which happens to all cells) caused by free radicals.

5) Following on from point 4, radiotherapy works by increasing free radical activity around cancer cells & research has shown that the effects of radiotherapy are enhanced during nutritional ketosis.

So what do you eat on this diet? When I first read about it I expected I’d have to munch my way through blocks of lard but it’s not like that at all, in fact it’s really healthy. On a typical day I eat the following:

Breakfast: Ketogenic Porridge (made from dessicated coconut, flaxseed, ground nuts, coconut oil & coconut milk)

Morning coffee: Bulletproof coffee (coffee + coconut milk or cream)  – it is delicious!!!

Lunch: scrambled eggs, mushrooms & spinach with ketogenic bread (made from nuts/seeds etc)

Snacks: avocado, olives, macadamia nuts or fat bombs (made from nuts, coconut, coconut oil)

Dinner: Chicken breast or Fish with green veg (all cooked in coconut oil)

The high fat percentage of the ketogenic comes from using oil with every meal – even the coffee is high fat. I thought I’d struggle with eating this way as I’ve always had a low tolerance for fatty/greasy food, but it’s actually been okay. The main problem I’ve had is sticking to the diet.

My nutritional therapist (http://www.carolgranger.co.uk) who is an expert in the ketogenic diet, advised me that it’s really beneficial to stick to the diet around the time of treatment and I was really good for the few weeks pre- and post-radiotherapy. However, I fell off the wagon during trips away with family and friends. It went completely pear shaped during a recent stay in hospital – hospital food is completely the opposite to ketogenic.

I’m now back on the keto wagon and feeling very virtuous after achieving nutritional ketosis for the last week. There are ways of measuring this which I will explain in my next post.

The rules are no grains, no legumes, no root vegetables and no sugar. So no bread, pasta, rice, beans, lentils or potatoes. No sugar at all (or anything that converts to glucose in the body) not even artificial sweeteners.

If you have cancer and want to know more about the diet:

1) This site has one of the most comprehensive guides to following the diet and explains how it can be used to manage numerous health conditions. I really recommend purchasing the e-book by Ellen Davis if you want to understand how the diet works and how to put it into practice:

http://www.ketogenic-diet-resource.com/

2) Patricia Daly’s (also a cancer patient) website and e-book also has lots of great resources and an e-book full of yummy recipes:

http://patriciadaly.com

3) This site isn’t necessarily aimed at people with cancer but has lots of great recipes and also a really handy app (if you have an iPad) for calculating your daily nutrient (and net carb) intake:

http://ketodietapp.com/Blog

4) Dominic D’Agostino: http://ketonutrition.blogspot.co.uk/2012/08/kd-for-cancer-treatment.html

I am relatively new to the keto diet but if you want to ask me anything I will try and help or at least point you in the direction of someone who can advise.

Research links:
http://www.nutritionandmetabolism.com/content/8/1/75

http://www.nutritionjrnl.com/article/S0899-9007(12)00186-4/abstract?cc=y

http://www.cancer.gov/cancertopics/types/lung/research/ketolung

https://clinicaltrials.gov/ct2/show/NCT01975766