September 9, 2022

September 2022 Update - Unfortunately I've Had Progression

The Dally River took my breath away, so clear, so stunning, birdsong, silence.

When I last wrote I had achieved ‘no evidence of active disease’ status and was going off treatment to see how long it - this wonderful stage of normalcy - could last. The experiment has been conducted and the conclusions are in, I’m just not too happy with the results.

I had the best three months off, four and a half if you bring it to the rough here and now. I did the first round of routine scans at the three month point, and they showed progression in my liver, pelvis and spine. Which meant more chemotherapy.

My sons and I were about to leave on a three week camping road trip to the Northern Territory, and my oncologist was on also on leave, so holidaying seemed the very best thing to be doing. And it was. We have wonderful memories and the very best times. I will write separately on our trip and share some images here for a teaser. Such magnificent country.

One of our camp sites - this one at Ellery Big Hole in the West MacDonnell Ranges.

Cancer is the most disgusting of diseases especially once you get to stage 4 and metastatic.  Before that, before the advanced stage, bad as it is, it is just a blimp on your world. One year of treatment and really good odds of survival.

Who wouldn’t take that; especially with all the benefits of having a life-threatening disease cured and out of the way? Gifts, legacies, creative urges unleashed. Yes it is true – recovering from any life threatening thing has the potential to be life changing.

With Ryan at Uluru - we did the base walk all 10km of it.

Unless you are one of the unlucky ones with stage 4, and then your life has already changed, and will never change back in many ways. No matter how much you may not wish to accept it, you do not have a choice. You must. Even if others – family and friends – have a hard time accepting the real truth of the situation, one eye is always on that possibility.

Let’s not talk or think about the legacy toxic cancer treatments leave behind for the cured; best to just focus on the fact you are living and be grateful for that. No sarcasm intended, although eternally grateful for recovery and survival, we do need to do better so the consequences of survival are not so medically taxing for so many.

Dane and me at Kings Canyon and yes we did the whole rim walk.

I always knew it would come back at some stage, I had just hoped for a few years, at least, reprieve. And that’s not to say I can’t have more breaks like I just had. Life after all is about living.

Trodelvy, the new wonder drug

The new chemotherapy is called Trodelvy and was only included on the PBS this year after extensive lobbying by women with my exact condition. Before that it cost around $80,000 for around three cycles of treatment. It is more targeted than normal chemo because it includes an antibody which attaches to the cancer cell and injects the chemo drug directly into the cancer cell. It is still chemo though and it still kills and damages all my healthy cells as well.

Trodelvy is known to be tough on the body but gets good results if it works for you. It also only works on 35 per cent of patients. Hopefully it works on me. There is a test I did to check I don’t have a gene (UGT1A1) which limits your body’s ability to metabolise the chemo (nothing to do with cancer), and I do have that gene. To compensate for this, I am starting on a reduced dose of 70 per cent, and taking a white blood cell boosting injection the day after the chemo infusion. That causes so much bone pain because the white blood cells regenerate I the bone marrow (my non-medical understanding).

Trodelvy is Chemotherapy But it is More Targeted

For the scientifically minded here’s how it works. I find this and immunotherapy fascinating. Immunotherapy finds ways of exposing the cancer so our immune system can work as it should and our T-cells can kill the cancer cells efficiently before they become a problem. It’s amazing what medical researchers have discovered in order to design more target anti-cancer therapies that aren’t as toxic to the body as chemotherapy is.

Unfortunately this isn’t immunotherapy but it’s the next best thing.

After three months off chemo I was feeling wonderfully energised on our road trip in the Northern Territory. I was still fatigued but still felt so normal for a change. The very best time.

Trodelvy (sacituzumab govitecan-hziy) is a type of targeted therapy called an antibody-drug conjugate. It works by delivering a chemotherapy drug directly to the cancer cell which keeps it from growing and spreading. It consists of an antibody (an immune system protein) that's linked to a chemotherapy drug. Trodelvy's antibody is sacituzumab, and its chemotherapy drug is govitecan-hziy.

So Trodelvy is an immune-targeted therapy medicine, but as I said it is not immunotherapy. The sacituzumab, a type of protein called a monoclonal antibody, targets the Trop-2 protein; the Trop-2 protein is found in more than 90 per cent of triple-negative breast cancers.

Think of it as a guided missile that’s on my side and very effective.

So what is Trodelvy like so far

On Monday (22nd August) I had my first Troydelv treatment.

“I did it. Day one is done and dusted,” that was me a the time.

I have since had infusion two. And I’m currently in the off week, although the dam ‘super’ fatigue hasn’t let up yet.

Basically I am on a 21-day cycle with treatment (iv infusion of chemo drugs) on day 1 and day 8. On day 2 and day 9 I have a Pegfilaster injection to boost my white blood cells and put on a Nulasta patch (a light morphine derivative) for seven days.

The sunsets were amazing and went on for an hour - honestly, turning from pink to purple to blue...

The first night the side effects were mainly headache and general fatigue and jittery not quite well feelings with bits of nausea mixed in. Although I did have a lot of bone pain - everywhere that night and by Wednesday when the injection had kicked in a lot more bone pain which settled down once the Norspan patch kicked in, and then no more pain.

Then Thursday was a real crash day, and Friday was not a great deal better.

The pre-meds (a range of anti-nausea, anti-allergy drugs and Dexamethasone a powerful steroid) suppress side effects for a few days but come with a huge list of undesirable side effects of their own, so I need to take them cautiously. Basically it’s a bit of a game to keep me guessing as to which of their ugly beads will pop up next and which medication will be needed to treat it best. A lot of research too, a lot.

Day 8’s treatment was pretty much similar to the first one but we added light-headedness into the side effects list. My blood pressure was fine and my pulse so I was advised to just drink more fluids. I ended up trying to drink a litre of water during the two-hour infusion. I am going to get water (hydration) added to the IV from now on as it takes that pressure off me to drink drink drink, and then anything I do drink is a bonus.

And Back to Life

My life has changed so much and this is not a life you wish to plan for or have. It isn’ t one you aspire to. Rather it is one that brings you to tears quite regularly even if you aren’t someone who readily cries, like me. Usually, it takes a lot to bring me to tears - especially if it is something pertaining to me. Films, other people's stories - they are quite another thing.

The top end - Dundee Beach. Breathtaking.

I don’t know how long I will be on Trodelvy. I am tolerating the 70 per cent dose really well, apparently, and the worst thing is the severe fatigue, but at least I am getting good sleep. An unexpected side effect is the fatigue has me sleeping eight hours plus a night. As a classic insomniac this is a lovely surprise - I usually get two blocks of an hour and a half to two hours per night and a five hour sleep is an occasional treat. I love sleep and am enjoying this new phenomena.

There are two approaches to my treatment plan. Once I get to no evidence of active disease again. I can continue on a lower ‘maintenance’ dose, maybe 50 per cent. Or I can stop treatment and do regular scans and restart when necessary. I enjoyed the past 4 ½ months so much and I like this stop/start approach. A fellow traveller told me the other day that she lives her life in three-month blocks. I definitely can do that.

So for now it’s back to living my life with cancer. And living I will do. Spending my time now between treatment, family, friends, being in special, precious, beautiful nature, activating for the planet and the collective future for humanity (more exciting news on that soon), The New Bush Telegraph where I am still the editor and doing my best to keep publishing awesome environmental and social justices articles even though we have slowed down massively (exciting future developments coming soon here too). And I’m learning the guitar, although I didn’t realise how much it hurts your fingers at first.

Right now I’m on my way to the snow for the weekend. It’s only Charlottes Pass, gentle as anything, and even if I only do two snowboard runs, I will be really happy. Memories of a past lifetime when my then-partner and I worked in the industry. I know this will be my last trip to the snow because there are so many other things I want to do and will do. This morning before we left, my hair started shredding, so there is never a dull moment. Never dull is good though, huh?

4 comments on “September 2022 Update - Unfortunately I've Had Progression”

  1. What an amazing journey North Bonnie. I love your photos.
    Your positivity is inspiring and your knowledge and understanding of the disease and drugs is mind blowing. Thanks so much for sharing your journey.
    I feel a tiny little bit closer to understanding what it must be like. Don’t worry about your hair Summer is on its way. All you need is a scarf to keep the sun ☀️ off. 💛

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Hello, I'm Bonnie Cassen

I am a mother, grandmother, editor, writer, and climate activist. I am also living with metastatic triple-negative breast cancer since July 2021. This is my blog for friends and family to keep them up to date with my treatment, and share experiences, philosophies on life, and death, and perhaps other things as well.
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