Updates, Apologies and More

Let’s start with the apology. Time got away, life was going as well as possible, and so I got busy. Things crept up slowly at first and we didn’t recognise all the signs, and by then, I was so fatigued that I didn’t have the capacity to update here. However many of you have been contacting me and wondering how I am doing. So here goes.

Trodelvy the Wonder Drug Didn’t Work

This is a biggie. Trodelvy – the new best treatment for metastatic triple negative breast cancer with its fancy antibody – did not work on me. In fact, I had progression right throughout my skeleton. And I lost my hair for nothing. At least I was only on it for three months before we realised.

Capecitabine

Capecitabine (Cape) is a tablet form of chemotherapy that I was taking twice a day every day – two weeks on, one week off. The off week was never much better.

The main side effects were hand and foot syndrome (similar to peripheral neuropathy), fatigue, low appetite and the usual digestion and gut issues.

After three months on Cape there was no progression but only marginal improvement in shrinking any tumours.

I found this frustrating because the very first chemo I was on got me to no active disease. When I ask now if I can go back to that chemo and then go on a maintenance dose, I’m told that by taking a four-month break the chemo would now be resistant to the tumours.

After another three months nothing had changed. Still no progression but still only minimal improvement.

Gut Issues

Trodelvy was known to disrupt the gut, and my gut biome was definitely out of order by then and getting progressively worse. Nothing improved on Cape. In fact things got worse. In the end I stopped treatment to concentrate on eating and gaining weight.

I was down to 40 kg and looking very anorexic. Then things started to change. My liver was getting bigger and was quite extended although I didn’t really know it was my liver at the time. My oncologist confirmed this at my next visit. She said your liver isn’t supposed to be like that. We concluded that it wasn’t the chemo or my gut aferall, it was my liver.

My Liver Saga

My liver really does feel like a saga now. It has been going on for a while. I could feel my liver growing. All the clothes that were previously falling off me were getting tight and uncomfortable. I joke that I now look like an anorexic five-months-pregnant woman.

I had bloods done on Friday 30 June and on the Sunday night my lower limbs from above my knees to my feet swelled in a complete oedema reaction and they have been that way ever since. It wasn’t until Wednesday that I received a phone call saying my liver markers and enzymes were all up, and I was in liver failure territory.

I should take a diuretic each morning, continue on the 2mg Dexamethasone steroid, take Maxilon every three hours for nausea, and go to a hospital if the pain or fatigue gets too bad.  

Liver Failure 101

Everyone has confirmed I am in liver failure, but the information available and accessing it is like pulling hen's teeth, as they say. Sorry chicken joke.

We did a CT to see if there was any way to drain the fluid or if there were any obstructions that could be cleared, but alas, none. My liver is full of fluid because it is full of tumours. The only thing that will help is getting rid of the tumours; chemo unfortunately is the only way to do that.

There are four stages of liver failure. I am only in stage one. Getting information has been an uphill battle since this is a rarer area than even triple negative. As those who know me would know, I am a researcher and more than capable of case managing and advocating for myself. I really feel for those who can’t or don’t.

There is so much misinformation, or people assuming that liver failure is the same for liver disease, or cirrhosis, fatty liver, or food and alcohol abuse, and it simply is not. I can’t detox; I’ve now realised the hard way.

My liver is currently not doing its job. It is supposed to cleanse all toxins from our bodies. So I have to do my livers job for it in a way.

I have to be ultra-careful with what I eat and what I am exposed to, and germs. I can't walk across a room without having to rest and recover. Luckily, and hopefully, this is a temporary stage. I expect good results in this first month and more improvements over the next three. Then a more normal me.

Proteins are the biggest issue because my liver now finds it hard to process them at all. I need to minimise protein to a very minimal amount. Any toxins not eliminated go straight to the brain, causing inflammation. This would take me to further stages of the liver failure process, which I don’t want.

Starting Treatment Tomorrow

Tomorrow after a few weeks off trying to build strength, I will start a new chemotherapy drug. The situation has become slightly more serious, and we hope my liver can tolerate the chemo. We can adjust the dose along the way, but careful monitoring and the first month, then the next three, will be crucial.

It will be weekly every week for three weeks, then one week off while I see my oncologist. I am having my treatments at the Kinghorn Cancer Centre in Darlinghurst, where my doctor, who specialises in and researches stage 4 triple negative breast cancers, is based. My daughter drives me up unless one of her children is sick. We treat it as a fun road trip and have Fu afterwards. When else would we get to spend a whole day together each week?

I also didn’t get into a trial because my liver markers were too out of range. It sounded good. It also had an antibody. I knew my bloods were bad. I knew I wouldn't get on the trial. I don't know why I cried when I found out. The chemo I am on is one of the same drugs used in the trial and is supposed to be effective on triple negative breast cancer.

Hope For the Future

The past few months have been shit, but I haven’t lost hope or my zest for life. I haven’t lost my love of nature or my sense of gratitude and peace to walk the earth on this wonderful planet in this lifetime.

Sure, I have pulled away from a lot of things lately. I’ve deleted all my work, climate and environment based emails, feeds, and groups to concentrate on my health. I’ve also stepped away for now from the activist activities I do for climate – the most important issue in the world if we want a liveable planet for humanity.

This is a temporary situation and I expect to see improvement within a month and great improvement in three months. Then I will return to my more active self and live authentically despite this disgusting disease.

More Soon

That’s all for now and I will update regularly from here because there are many things I wish to communicate and reflect on and share. I really wanted to do this update before starting treatment tomorrow.

My wonderful friend, magnificent web designer and business partner, Catherine, is giving this blog a makeover. This may happen over the next day or so. If the blog is down, try again later.

I am sure Wednesday will be a crash day so I have factored that into the week and will take it easy and have lots of rest. I’m hoping by Thursday or Friday I am feeling better.

I admit I am slightly nervous about how my liver will go and dreading it a bit. However, the good news is I am trying cold capping tomorrow so I don't lose my hair again. Apparently it is quite successful. I really suffer from the cold right now and am pretty nervous, but I will give it a go.

Until later… See you soon…