Breast Cancer Awareness Month 2023 and My New Targeted Treatment!

It’s Breast Cancer Awareness Month again, doesn’t the time fly! I have a love hate relationship with it. On one hand, it’s a wonderful way to bring the illness that is impacting the lives of more and younger women to the forefront, but on the other, it is also a time when the dreaded pink washing happens. I’m here to tell you, after my latest round of chemo, that there is literally nothing pink and fluffy about breast cancer. It is a brutal, life changing – often life ending – illness.

Raising awareness and funds is vital in the fight to take metastatic illness from not just treatable, but to curable. Without that support, the amazing medical advances might not be available, or get to where they need to be quickly enough for so many people.

The chemo that I am currently taking, Enhertu, is the first targeted treatment that I have taken since I was first diagnosed in January 2015, and while the side effects are challenging, the results of the first PET scan after taking it for 5.5 months have been nothing short of incredible. There is no doubt in my mind that all the awareness and fund raising that is dedicated to breast cancer research has been key in me receiving this treatment today!

Until April this year, I have been treated over the years with “blanket” treatments. A bit of a one size fits all, whether that be chemo, radiotherapy, radio-frequency or hormone treatment. All of this changed when I went to see if I have a genetic mutation that pre-disposes me to cancer and one of the lesions in my bones was finally large enough to biopsy.

When I was first diagnosed I was tested for the BRCA gene. Most people are aware of this gene – Angelina Jolie famously decided to have a preventative double mastectomy and the removal of her ovaries to reduce her risk of cancer from 80% to that of the general population. I didn’t have the gene. However, since 2015, at least nine more mutations have been discovered, so my oncologist decided it was a good time to take the test again. It was particularly easy as they were able to retest the sample they had taken from me back in 2015. This time, the results were very different. I carry a hereditary genetic mutation called PALB2, which carries a risk of 40-60% chance of breast cancer, 2-5% chance of ovarian cancer and 2-5% chance of pancreatic cancer. While this doesn’t change much for my treatment at the moment since my ovaries have already been removed and I am monitored frequently and under treatment, there is no way to know whether it might impact a treatment in the future. What has been really important is being able to communicate to my family that there is a genetic risk. Knowledge is power and they are armed with the information to make informed decisions about their own potential risks.

What was more significant for me was the result of the biopsy which confirmed my type of breast cancer as HER2-low. This came at a really important time for me. Hormone treatments that are currently on the market are no longer able to control the cancer and the last two chemo’s I had did nothing to stop progression, I had the most lesions and activity I’d ever had. I had twenty lesions and activities on my bones, activity in a key lymph node and nine activities in my liver. When cancer moves to the liver it becomes more aggressive and that is a scary time!

Luckily for me, Enhertu (trastuzumab deruxtecan) has been approved in the European Union for adults with unresectable or metastatic HER2-low breast cancer. The approval is indicated for those who have received prior chemotherapy in the metastatic setting or developed disease recurrence during or within six months of completing adjuvant chemotherapy. In conclusion, ME!

This is the first HER2-directed therapy for HER2-low metastatic breast cancer and with all of the progression I had experienced, this was the first big test since all of the initial belt and braces approach. I was keen to get started!

This has been the most brutal treatment I have ever taken. It is administered intravenously every 21 days, taking about half an hour. I always have it on a Monday. I start to get very tired by Thursday and after the first treatment in particular, by Saturday, I felt so ill, I genuinely didn’t know if I had the strength to carry on. It was hideous. I don’t really know how to describe it, but there was plenty of nausea, crying, metallic taste in the mouth, waves of uncontrollable emotions, and diarrhoea. Sunday it eases slightly and by Monday, the worst of the symptoms are over but I am incredibly tired and low on energy, probably feeling more like myself by Thursday. It is a solid week of dealing with less than pleasant side effects. Fortunately, it is getting easier with time and has never been as bad as that first treatment, but it is absolutely awful and I dread it each time. However, it’s certainly worth it.

The signs along the way were good. My cancer markers, which can be measured through blood tests and were as low as 23 back in the beginning after my breast tumour had been removed and I only has two tiny bone lesions, were measuring at 141 when I started Enhertu! They dropped to 55 after only two treatments and then to 32.5.

This was certainly encouraging information going into the PET scan which would really give us an indication of how well the treatment was working. Even though I was cautiously optimistic, I still suffered the usual bout of scanxiety and was beyond appreciative that I was able to have the results the following day!

The response was more than we could have hoped for. All liver activity – GONE! The lymph node activity – GONE! And as for the bones, twenty lesions became three and they are actually not able to tell if this is residual cancer or scarring and the cancer markers are now at 27 which is in the normal range! I am just blown away by the results.

For the moment I will continue with the treatment until the next PET scan and if the results are as good, or hopefully better, I will come off the chemo! The thought of not having to suffer every 21 days is amazing, though I have no idea what that means in terms of my treatment moving forward…but that is a question for another time. This is more than a mini win, this is a MASSIVE win and I will suck up the horrible side effects.

I am so fortunate to live in Switzerland. This chemotherapy is very expensive. In the UK, NICE (National Institute for Health and Care Excellence) has just issued draft guidance that the UK’s National Health Service (NHS) should not provide Enhertu to patients in England with advanced HER2-low breast cancer. Why? Cost!

“NICE's independent appraisal committee asked the drug sponsors to provide more information on Enhertu's efficacy ahead of its next meeting in early November, including more data on the treatment's ability to extend patients' lives, whether it continues to benefit patients as their disease worsens, and how these benefits compare to patients' outcomes on standard therapy.

Helen Knight, director of medicines evaluation at NICE, acknowledged in a statement that while the regulatory approval of Enhertu in HER2-low advanced breast cancer "represents a potentially significant development" for patients with limited treatment options, additional evidence is needed to help the committee make a more informed decision about the cost-effectiveness of the drug in this setting.” (Precision Medicine Online – 26/09/2023). I’d say based on my scan results, it more than represents a significant development for patients, forget potentially! Not everybody will experience the same efficiency, but a lot of people will.

Enhertu is approved in more than 40 countries – it should be available in all countries.

I hope my story sheds some light on how important medical research is and how awareness and fund raising will help women who aren’t fortunate enough to live in one of those 40 countries.