After All Those Bad Things I Said About Letrozole…

I feel that I need to revisit the whole letrozole thingie, just to be fair.

In my last post I expressed my frustration with the continued side effects of the estrogen-supressing aromatase inhibitors designed to reduce the risk of cancer recurrence. Cancer survivors face a considerable amount of pressure from our oncologists to stay on these medications, but everyone agrees that their use does not come without health risks or hits to one’s quality of life. The latter is a squishy concept that is not easily quantifiable.

Deciding whether to take medications for the length of time prescribed, or stop them early, comes down to an individual’s tolerance of both the side effects and risk.

So after all the complaining in my last post, the big question I have in front of me is that, given that I’m already postmenopausal — regardless of the fact that it was the medication that pushed me into menopause — if I were to stop letrozole, would I experience a significant improvement of my complaints? And if I could reverse the side effects how long would it take? None of that is clear.

Granted, there remains additional risk in taking an aromatase inhibitor, particularly long-term, as the cessation of estrogen production contributes to aging and age-related maladies, including heart issues, bone loss and broken bones. And certainly, there is gradual collagen and hair loss, not to mention suppression of the libido.

There are some bright spots in this.

But if we ignore that for now, I have to admit that not all days are as bad as how I described them. I don’t lie in bed staring at the ceiling while every single side effect hits me all at once. I experience them here and there. And most of them are tolerable.

My fear is about the future. If I’m feeling this now, what will it be like in another six months or a year? What if things go downhill gradually and I don’t realize it until later when I’ve slid so far down that nothing is salvageable. That’s completely ignoring the realities of the “now” for the imagined troubles of tomorrow. That is not being mindful!

But unfortunately, with medications such as these, the future is a factor that must be taken into account, and with that comes anxiety. Of course, anxiety always makes things worse. For me, it’s one of the most difficult side effects of cancer, because it magnifies all the negatives, both real and imagined.

I realized after I submitted the last post, after I complained about all the things I was experiencing, that not everything was as horrible as I thought. Things are not “normal”, and the situation is still applying a frustrating pressure on my quality of life. But maybe, for now, can I hold on and get the most out of the benefits of letrozole, and then re-evaluate tomorrow?

Yes, I can.

(Almost) Six Months on Letrozole

WARNING: IF YOU ARE STARTING ON AN AROMATASE INHIBITOR, I highly recommend that you not read this and instead give yourself the chance to gauge the medication’s effects without being influenced by someone else’s experiences. Note that I started letrozole just out of menopause, so my side effects from this drug have been more dramatic than they might be for a women who’s been postmenopausal for longer.

First a bit about aromatase inhibitors: according to breastcancer.org, “Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.” Think of this as starving a hormone-positive cancer of its food.

Aromatase inhibitors have been shown to be more effective than tamoxifen, with fewer serious side effects, although they are certainly not risk-free as they can cause “more heart problems, more bone loss (osteoporosis), and more broken bones than tamoxifen.” (breastcancer.org)

When it was time to start letrozole, I took a different tack than when I began tamoxifen. For the latter drug, I did all the research I could, researching relevant studies, digging into possible side effects and visiting lots of forums to learn about what other women were experiencing.

I wish I hadn’t. I think all the negatives affected my perception and made me anxious about taking the medication.

The letrozole pill looks so teeny and cute – how bad could the side effects be?

So after two years of tamoxifen, when my hormone levels suggested that I was postmenopausal and it was time to switch to an aromatase inhibitor, I stayed away from clinical literature about letrozole. I decided to give it a chance, since my oncologist felt that I had confused the effects of anxiety about taking tamoxifen with the actual effects of tamoxifen.

Okay, then. As I was leaving my oncologist’s office, letrozole prescription in hand, he added that some women complain of “joint pain”. I think he felt it was his duty to warn me.

My experience? I’m finding it harder to recover from workouts. I train with free weights and am a rower (currently, indoor) and the change in my resilience and stamina is striking. In 2018, a year after finishing up chemo, I was able to power through tough workouts and felt like I’d gotten most of my pre-cancer strength back.

Fast-forward to now, just two years later, I feel old. My joints are creakier and I’m having increased muscle pain and overall stiffness. I’m experiencing bone pain in the leg that I broke skateboarding when I was 12. Yeah, I push through workouts, but they’re taking their toll on me.

I’m fortunate to have a full complement of gym equipment at home, so the COVID-19 lockdown didn’t hinder my workouts. To get some fresh air, I incorporated more hiking into my routine, in addition to my regular workouts.

It was too much and left me with hip pain that made it difficult to fall asleep. So I took a rare break from vigorous workouts and for two weeks incorporated more gentle movements and focused on yoga, which I had been doing intermittently.

When I started ramping back up, I didn’t feel rested, I felt weak! Weights that had been easy to lift a couple of weeks before felt challenging. I had to restart the process of building my strength. You could pass it off as simply “age”, but I’m only 54, and the drop in strength and energy has felt precipitous, even demoralizing. While it’s true that I went through menopause during the last two years, it was a medication-induced menopause and I was literally shoved through the change.

Letrozole has been shown to be very effective in preventing cancer recurrence, presumably because it works to keep estrogen levels low. However, most women on letrozole are in their 60s and have been postmenopausal for a number of years. For a woman in her 50s, the aging effect of estrogen suppression has felt dramatic.

My libido dipped even lower than I’d experienced with tamoxifen, something I was warned about by my GP and gynocologist (both females). My male oncologist didn’t talk about it. I believe this is a seriously underreported side effect of aromatase inhibitors and one that many women suffer from in silence, because they don’t feel comfortable bringing it up.

Likewise, I feel my appearance changed. Now, this may simply be my perception of myself, as my post-chemo hair transitioned from super-cool and spikey to thin and limp (and, now, untrimmed!), and my eyebrows never recovered. But it’s not just in my head: A bus driver recently tried to offer me a senior citizen discount, whereas four years ago someone had told me they thought I was in my late 30s! That’s a big difference. The fact that the lack of estrogen is making me look like I’m older than I really am has become distressing:

And that difference is felt in my relationship with my family. There have been times that I’ve looked at my husband (four years my junior) and my high school-aged kids, and I feel like don’t belong with them. I feel like a stranger, an old lady that’s just hanging around. That hurts a lot.

And on my worst days, I feel dark clouds rolling in, bringing with them frustration and hopelessness. Is it letrozole or menopause? Does it even matter? Take a woman, throw her in a bag, tie it to a tree branch and then beat it with a stick. That is how I feel when I have to take a pill that does these things to me. No control, no future, lots of pain. The longer that I continue with medications like this, the more I feel that they are pointless, since I’m starting to not care whether or not the cancer comes back. And that’s the worst side effect of all.

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So, this blog is about being honest about the cancer experience. But it’s also about mindfulness. I have to open the door and let the negative feelings into the room so that I can offer them compassion and a kind ear. I sit with them for a while, and eventually, I feel better.

Who Knew a Grapefruit Could Create So Much Confusion?

A few days ago, I decided to eat a grapefruit. We had gone to a Korean market earlier that day, and the citrus fruits beckoned to me with an enticing fragrance. I couldn’t resist.

So as I was finishing up one of the most delicious grapefruits that I’d had in a long time, I started thinking. Back when I was taking tamoxifen, I’d come across an admonishment not to eat grapefruit because it could interfere with absorption of the medication. But I wasn’t taking tamoxifen anymore, I was taking letrozole. Could the same be true?

I started googling, first on my phone. And as the search results came in, I had to switch to my computer because things were looking confusing. Many sites said “NO” in no uncertain terms. Grapefruit can prevent the letrozole from breaking down in the body completely, leading to higher levels remaining than could be safe.

It wasn’t that the grapefruit was hindering the efficacy of the letrozole, it was that grapefruit could set up a dangerous situation of “overdose”.

Of course, googling often results in messages that are big on warnings and short on details. So I dug further and happened upon forum posts where other women were asking the same questions.

I read the following exchange: one woman said she’d spoken to two different hospital pharmacists, both of whom had given her the okay to eat grapefruit. A number of other women (like, everyone else) chimed in on how they had unequivocably been warned to stay away from grapefruit (for the above mentioned reasons). The first woman reiterated that she had been told by HOSPITAL PHARMACISTS that she could each grapefruit with impunity…and so it went.

Do I LOOK like I know what I’m doing?

What really bothers me about this is that so many websites suggest that, it really it best to avoid grapefruit due to possible interactions with letrozole. But I slogged through the entire bloody informational insert from the manufacturer of my drug and NOWHERE did it mention that I shouldn’t eat grapefruit. There was also nothing on the bottle itself, nor did my oncologist say anything about that.

However, WebMD’s grapefruit interactions webpage, while not mentioning letrozole by name, did suggest issues with estrogen and also Cytochrome P450 substrates (of which letrozole is one, but I just happen to know that; others wouldn’t necessarily). WebMD’s letrozole info pages made no mention an issue with grapefruit. I mention WebMD mainly because many people consider it a reputable site and may go there for information.

If it truly is that dangerous to eat grapefruit while taking letrozole, why is that not explicitly stated on the container? Why would any woman think to google a random fruit or vegetable, like, “I think I’ll eat an artichoke and shiitake mushrooms today, but first I’ll do an internet search to make sure they don’t affect my medication.” Who plans their meals like that?

The bottom line is, the effect the grapefruit has depends on a variety of factors. It depends on when you’re eating and how much you’re eating, and how many days in a row. But all of that is so unsatisfying to me, who wants a concrete answer. Cancer is not about answers, however, it’s about getting comfortable with living with the unknown.

So, back to the grapefruit. Spooked, I skipped the medication that evening, although I’m sure I could have taken it and still lived through the night. I’ll ask my oncologist about it during my next visit, but I expect that his answer will be, “just don’t overdo it.”

And there’s another fragrant grapefruit sitting on the counter, which I will eat at sometime in the future, maybe half at a time. Here’s to living with uncertainty!