Friday, February 21, 2025

 Update: February 2025

 

2025 02 21

Hi everyone –

The mind-body connection is a very interesting one. When one feels and looks very well and is able to function just fine, yet the results of some monitoring at least partially contradict that, it’s hard to know what to make of it all!

I had my routine CT scan on Wednesday, plus the usual consultation with Garth the mensch oncologist today. He told me that the scan shows we’ve already reached Tamoxifen’s sell-by date for me, as there are a few new (small) nodules in my lower left lung, no reductions in the size of the existing ones, and the fluid outside that lung has slightly increased in volume. If the fluid is left untreated, it’s eventually going to cause some nasty symptoms.

At the same time, it’s not all bad: my bones continue to be good, with no need for radiation or anything like that. (And another not-bad thing is that stopping Tamoxifen may also bring an end to the horrid nightly leg cramps that have been its main side effect.)

So, what to do next? Garth, Gail and I had a long and detailed discussion about my options, and ultimately agreed that I would move on to Letrozole. This is the same anti-oestrogen drug that I tried three years ago and described as “a great big EISH” at the time. But there were several other factors that could have caused my abreaction just then, and a lot else has changed for me, so we are trying it once more. If the “EISH” factor kicks in again, we’ll move straight on to the next anti-oestrogen drug, Fulvestrant, which is an injection (typically monthly) rather than an oral treatment.

I have also reconciled myself to the need to take a CDK4/6 inhibitor, which is an oral drug to block the activity of cyclin-dependent kinase (CDK) 4 & 6 proteins that would otherwise continue to increase the growth of the cancer cells. It is always used in conjunction with an anti-oestrogen drug, and usually leads to a high response rate that lasts several years. However, it can only be used in conjunction with one anti-oestrogen drug per person. So, if I start it in conjunction with Letrozole and then Letrozole stops working for me, it’s also an immediate farewell to the CDK4/6 inhibitor. Whereas if I only start it if and when I eventually move on to Fulvestrant, I can continue to use it until the end of my time on anti-oestrogen drugs.

And after that?

I had thought that this would be the end of the road, but it’s actually not the case.

Garth had once told me that chemotherapy is not recommended for oestrogen-senstive breast cancer. Over time, though, he’s unpacked the nuances of this for me. What he meant was: chemo – even the hard-hitting RCHOP chemo that I had for lymphoma – can’t cure oestrogen-sensitive breast cancer or its metastases, so it’s pointless going through all that when the aim is to manage the cancer rather than to cure it. However, once all the anti-oestrogen drugs have been exhausted, an oral chemo that is much gentler than RCHOP (and doesn’t cause hair loss etc) is available to me.

All discussions with Garth have the main aim of balancing quality and quantity of life, and he is as keen as I am that I should be able to continue dancing and living life to the full, for as long as possible.

As always, huge appreciation to all of you for your ongoing connection with Gail and me, and for the support you give us, in so many ways.

(Photo: Gail found this self-seeded portulaca this morning in our little courtyard. To me, it says: “Keep on keeping on!”)

Lots of love 🌹❤️

PS: Although these messages are mainly for updates on my health etc, I feel that it’s important to mention something that has hugely impacted the South African circle dancing community, including me: the loss of the wonderful Phil Smith at the beginning of this year, after he’d had a brain aneurysm and an operation on it in August and had been in hospital for five months. He and I were exactly the same age. Phil leaves a legacy of his choreography of about 80 beautiful dances, plus videos of many of them, plus the memory of his facilitation of the Cape Town Saturday sessions. He also leaves a huge hole in our lives: we miss his love of life, of dancing, of family and more. If you look back at the photos of my “I Survived” party, you can see Phil in all the photos of the dancing. He’s the tall, thin one in shorts. Fly free, Phil. Love from me, always.