Tamoxifen, taxanes and temperature rises

Summer used to be my season. I’d grumble my way through winter and as the weather got warmer I would shed my misery with each layer of clothing. There’s nothing like that day in September where it’s hot enough to wear a tank top and feel the warmth of the sun on your skin for the first time in months

But it’s now December and two days into a 37C heatwave, I’m exhausted. Thank god I’m on leave this week, because I wouldn’t have made it into the office.

The Boy and I set the alarm for 5.45am to walk Scoo before it got too hot and even though we were home by 7am, I was a hot, sticky, breathless mess. I barely managed to make it up the hill and for the second morning in a row I had to lie down after we got home.

I couldn’t figure out what was wrong, then The Boy asked if it was tamoxifen related and it all made sense.

Tamoxifen screws with my body temperature. Physically, I am hotter than I used to be and it’s not just during the hot flushes. This made winter a lot easier, but if we have a scorching summer I’m going to really suffer.

It’s not so much that one hot day, but when they bank up. A few weeks ago a 35C day was great, because it was surrounded by a week of 25C weather. Now though, mid December, the bricks have absorbed all that heat and held onto it, like a child hoarding its chocolates after Easter, so they’re never quite cool down. So take the forecast temperature then add a few degrees for the heat emanating out and up from old brick buildings and concrete sidewalks, plus a few more from tamoxifen, and that’s where I’m at.

My newfound sensitivity to heat is probably a combination of the tamoxifen I’m taking now and a residual side effect of taxanes.

I remember last year, towards the end of chemo when I was supposed to head out on a 30-something-degree day, I made it out the door and down the steps before I had to lean against the wall, catch my breath and go back inside. I just couldn’t do it, it was all too hot, too stifling, too much.

Another day where I discovered itchy red bumps all over my body. Even the soft cotton of my maxi dress, which I wore to protect my chemo-sensitive skin from the sun, was exacerbating the prickly heat rash.

A quick Google shows taxanes, a class of drugs given during chemo, causes heat intolerance that can last years after chemo. Great. And tamoxifen ups your core body temperature so it’s harder to regulate heat. Double great.

I’ve spent the day in my apartment, with the windows and doors closed, sitting in front of the fan in an effort to keep cool when I’m the person who usually redirects airflow so it’s not coming straight at them.

To escape the apartment and test The Boy’s theory, I took a quick walk around the block with Scoo this afternoon and my back, which was to the sun most of the time, is all hot, scratchy and angry even though I wore a T shirt so it didn’t have direct skin exposure. He’s right. Not normally something I like to say in the best of circumstances, but really wish he was wrong on this one.

I’ve always loved the epic thunderstorms we’d get after a heatwave and the sweet relief they’d bring. The temperature would soar close to the 40’s for a few days before the air cracked, decorating the sky in streaks of lightning to the tune of thunder that sounded like fireworks. Now I’m looking forward to them for a whole new reason.

Cancer is a chronic disease

One of the major mindfucks when dealing with cancer is that it doesn’t have an end point. Even being classified cancer free or in remission doesn’t mean you have the all clear. It’s a virus – one that affects other parts of your life, your health and your mental wellbeing – that you can never shake off, no matter how hard you want to believe Taylor Swift.

If you break a leg, they reset it, fix it and you’re on your way. Done. Back to your life before the accident. You don’t have to take that broken leg into account two years later when deciding on future medications, risks, contraindications and complications.

It’s been five months since I’ve finished active treatment and I’m looking a lot more like me. Hair, brows and lashes are back, not quite the same but close enough. Cheekbones, once dormant under that puffy orb which replaced my face while I was on steroids, have popped back up so my face finally has definition again. I’ve lost those extra chemo kilos that were stubbornly hanging round.

I’m looking, and feeling, good and everyone is cheerfully asking me whether it’s all over now. They’re confident enough in my appearance to ask and they can’t hide the expectant look on their faces, a sweet indication that they’re rooting for me, and yet I can’t give them the good news they want to hear. So I just tell them that the heavy lifting is over and now I’m on medication for the next few years.

What I don’t tell them is that by a few, I mean five to ten years. That while hormone therapy will theoretically increase my chances of long term survival from breast cancer it also comes with nasty side effects such as an increased risk of uterine cancer and sometimes debilitating menopausal symptoms.

I could accept this a lot better if I knew there was a guarantee, a final full-stop at the end of it all. Case closed. But there are no absolutes with cancer. Even following my doctor’s recommendations, my long term survival rate is only in the high 80’s. When she ran my numbers, which looked at my type, grade and stage of cancer and how the combination of chemo, mastectomy, radiation and hormone therapy would theoretically increase my lifespan, I was expecting to be high 90’s. After all, I did everything they told me to do. So that was a startling blow.

And now, my circumstances have changed and we’re discussing adding a new medication to the mix. One that will shut off my endocrine system, plunging me into the depths of a chemical menopause and all that entails, including depression, hot flushes, insomnia and osteoporosis. Overnight I would have the body of a 60 year old. My oncologist very patiently and methodically pointed out new research that showed zoladex in conjunction with tamoxifen had a 35 per cent benefit in two groups; women under 35 with early stage breast cancer and women who had an advanced stage tumour with lymph node involvement. I belong to both of those groups. But then she went on to explain the relative benefit, which is this benefit divided by my projected survival rate, was only three per cent.

So now I have to make a choice, but even with all this information I’m still flying blind. For all the research, studies and data out there, there’s nothing to guarantee the result I want.

But the biggest mindfuck? I could stop every one of my medications, rid myself of the accompanying side effects and remain cancer free until I die of old age. I could also take the scary drugs, remove my ovaries, potentially give up my chance of conceiving and it could still come back.