Tag: Endocrine Therapy

No More Sticky Fingers!

Running late with this post as I’m furiously cleaning our apartment in advance of the Christmas holiday!

I noticed a few mornings ago that when I made a fist and then straightened the fingers of my right hand, the joints didn’t stick at all.

It took over 300 days…but I’m happy to celebrate the end of the side effects!

While this may seem like an odd thing to celebrate, it marked a milestone for me. This was the last side effect attributable to letrozole that I had been experiencing, and it was finally gone. Letrozole is an aromatase inhibitor that blocks production of estrogen and is used as endocrine therapy for breast cancer patients who have estrogen receptor-positive tumors. I’d been on it for about 14 months after switching to it from tamoxifen.

For reference, as of today, I am at Day 307 since stopping the medication, so it’s taken quite a while for this joint side effect to subside. Yes, there are other things still plaguing me, such as memory issues, low libido and difficulty maintaining muscle (even with strength training), but those are more difficult to separate out from the garden-variety effects of menopause.

The sticking fingers began in August 2020 (about 8 months after starting letrozole) and were getting progressively worse. By March 2021, when I called it quits with the endocrine therapy, a number of finger joints were sticking and painful, particularly in the morning.

At that point, I was having trouble getting up off the floor, as I was having issues with joints throughout my entire body. The medication was affecting various aspects of my life, making it difficult to exercise and, as I like to put it, lowering the quality of my existence. Following discussions with my oncologist, we both agreed that my risk of breast cancer recurrence was low enough to stop the meds.

It’s been quite a journey to get to the point where I am now.

Shaking this last side effect of letrozole reminded me how far on this cancer journey I’ve traveled. There have been so many ups and downs, friends made and friends lost to the disease, that it was easy to forget that nothing in life is permanent. Time passes and situations change, sometimes for better, sometimes for worse.

The concept of “CANCER” used to terrify me, and after I was diagnosed, I hit a low so deep I thought I’d never be able to crawl out of it.

Gradually, as my experience with the disease played itself out, I came to accept the uncertainty about the future. As the end of 2021 draws near, I inch closer to the 5-year survival mark. The fact that I can straighten my fingers in the morning without any pain or sticking is a perfect example of how while I cannot know what the future will bring, I can deal with the “now”. And this “now” is not so bad.

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Best wishes to everyone for a very Joyous Holiday Season and much promise for 2022!

After My Last Oncologist Visit, I Fell Off A Cliff

I had an oncologist appointment last Thursday that marked four years of being done with chemo for breast cancer.

During my previous onc visit in February, I had been a mess: depressed, stressed and miserable with joint pain and a feeling that my endocrine therapy was taking away from me more than it was giving me. At that point, he let me stop the aromatase inhibitors.

Now, half a year later, I felt so different. My blood pressure was 118/83, much lower than the 130s and 140s systolic numbers I was hitting after stepping into the exam room on previous visits. I was peaceful and more hopeful.

We discussed all sorts of “survivor” things. The joint pain had mostly resolved itself and was no longer a hindrance to exercise, one of the things most important to me. My libido could have been higher and my short-term memory was often lacking, but he felt that could also be attributable to working and sleeping in the same room for the past year and a half, coupled with menopause.

Finally, my doctor noted that it was time for another chest MRI. Not the most comfortable of scans, but I’d done it once, I could do it again.

I would love a pet, even if it means having to clean fur out of my keyboard.

It was not until around noon of the next day that I suddenly plunged off a cliff. I was talking to my daughter and randomly mentioned my willingness to look after any pets she might have in the future when she’s living on her own, were she to travel for work, because where we lived now we weren’t allowed to have pets…

…and I was slammed by a massive wave of sadness and regret.

My thoughts zoomed back to my first chest MRI, stripped to the waist, lying on my belly, arms stretched over my head, frightened and painfully vulnerable. All my focus was on breast cancer and what other horrible realities the MRI would reveal. All I could think of was surviving my upcoming treatments.

That MRI meant that my life was on hold. There would be no progress in my career for the foreseeable future, and no chance of moving into a bigger place, one that would allow us to get a cat (note: I’m a dog person, but I would have been happy with a cat!). Animals have always been a part of my life, but our apartment rules prohibited them. I yearned for the chance to have a pet again. It seemed such a small thing to ask, but even that wasn’t available to us now.

That brief discussion with my daughter underscored a profound feeling of loss and despair. Cancer had robbed me of a lot of things in my life that others took for granted.

This was my view before I realized I didn’t have to sit there.

And as I sat there in the depths, I forgot that time does not stand still, things are always changing, nothing is permanent…and I have inside me everything I need to climb out.

Curiously enough, I had recently attended a talk on managing anxiety aimed at cancer patients and survivors. The counselor who presented the information was herself a breast cancer survivor and she told us a story of doing a follow-up chest MRI, which she found very stressful. Afterwards, she was asked by one of the cancer nurses what sorts of mental tools she had used while in the MRI tube to calm herself down. At that point, she realized that even though she taught these techniques to her patients on a daily basis, she had completely forgotten to use them herself!

I had been sitting in the darkness for a few minutes when I remembered her story. Most importantly, I remembered that I didn’t have to feel this way, that it served no practical purpose and that I wanted be happier. The only reason I felt like this was because these emotional plunges had been a habit of mine.

So I twisted a rope out of all those grounding techiques that I’ve posted about and pulled myself up.

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True, I still didn’t have a cat. But I was able to take a deep breath and realize that at least I had a future. And that future might contain a cat.

“The Gun Show”: Assessing Biceps Muscle Loss Due To Endocrine Therapy [PHOTOS]

In my last post, I whined about the repercussions of taking aromatase inhibitors (in my case, letrozole) as a way to diminish the amount of estrogen in my body, for the purpose of reducing the risk of breast cancer recurrence.

While I also mentioned letrozole’s effects on my exercise habits, in this post I wanted to drill down on one aspect in particular: muscle loss.

Before I go further, I need to add a disclaimer. Since the time the first photo was taken (the morning before my first chemo infusion), three and a half years passed and I went through menopause. Notably, the menopause was pharmaceutically-driven, starting with tamoxifen and then, after my hormone levels were low enough, continuing with letrozole. However, my body now is dealing with the same aging effects as someone who had transitioned naturally.

Except that my transition came before its time.

The below photo is from April 27, 2017, before I headed to the infusion center for my first dose of chemo. I had been training as normally as I could, under the conditions of lumpectomy and port placement that I wrote about here, and finding work-arounds for exercises that I’d been told not to do.

This is my 51-year-old biceps muscle, before I started the pharmaceutical portion of my breast cancer treatment.

While I lost some size and strength throughout my chemo infusions (here are all the photos), I was able to bounce back and had a particularly strong 2018 (sorry, don’t have good photos of that). But as the endocrine therapy with tamoxifen continued in 2019, to be replaced by letrozole in 2020, I could feel the effects of low estrogen.

On December 11, 2020, I struck the same pose again for sake of comparison.

Is something missing? This is my 54-year-old biceps muscle, struggling to keep up. Note: I am still working out as hard as I can!

As far as muscle appearance is concerned, I have experienced a slow downhill slide. My shoulder is not as peak-y, the biceps itself has decreased in size and I even find it more difficult to hold this muscular contraction. In addition, there’s more looseness in my skin, particularly at the back of my arm, which in part may be due to loss of collagen, also affected by estrogen levels (nice dermatological review by Shah & Maibach, 2001, Am J Clin Dermatol).

I’m busting my butt trying to increase the amount that I’m lifting, but I’m not making progress. Not surprisingly, the decrease in estrogen plays a role in this. As stated by Chidi-Ogbolu & Baar (2019, Front Physiol), “estrogen improves muscle mass and strength, and increases the collagen content of connective tissues”.

It makes sense then that lack of estrogen is going to be detrimental to maintaining muscle. To that point, Kitajima & Ono (2016, J Endocrinol), working with animal models, have found that “estrogen insufficiency leads to muscle atrophy and decreased muscle strength of female mice.”

Not just mice, obviously.

This information comes as no surprise to any woman who’s gone through menopause, I’m sure. But the experience of being slammed through menopause instead of having the opportunity to transition more gradually is yet another frustrating way that having cancer pulls the rug out from under you and reminds you that you are not in control of your life.

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Slowly, yoga is becoming more important in my life and my view of fitness is changing. Good thing too, since I can’t keep beating myself up like this.

Hanging Tough With Letrozole — Or Not

There seems to be so much back-and-forth in the life of a breast cancer survivor. I really thought things would settle down eventually, but it seems like they refuse to.

The ultimate goal, of course, is to squash the risk of cancer returning, but the way medicine goes about it is not always kind to the patient.

Let’s back up. First, there’s the shock and anxiety of being told you have breast cancer. Because the average age at diagnosis for women is 62, most of these women grew up at a time when cancer was strongly linked to death. While treatment, and therefore survivability, has greatly improved in recent decades, a cancer diagnosis is still frightening.

That life-saving treatment comes with a reputation for nastiness. Surgery seems like the easy part; it’s the chemotherapy and radiation that we’ve heard horrible things about. I myself had six infusions, each three weeks apart. I assure you, I memorized the calendar, knew the dates of the infusions and the order of my drugs. Even about what time each one would begin on the infusion day. I counted the minutes to the end. Then came radiation, but that seemed like a cake walk in comparison.

Once through ALL of that, you figure that the treatment portion of your cancer is over and you have the rest of your life to ride into the sunset, basking in the warm glow along the way.

But for those of us with hormone receptor positive (HR+) cancer, there’s this little thing called endocrine therapy that seems like an afterthought when you’re going through the “tough stuff”.

Yeah, you think you’re done, but then you realize, there’s more…

Yet it does feel like a slap in the face when you’re “done”, because you’re not really done. And that’s where we find out that while chemo and radiation were the “running the gauntlet” phase of cancer — abusive, but time-limited — for many, the hormone therapy afterwards is like doing the Ironman triathlon. Except the water, bike and road are on fire. Because it’s hell.

Okay, about here is where I have to stress, my experiences with tamoxifen and the aromatase inhibitor letrozole (Femara) have not been as brutal as for other women. At the same time, they’ve not come without complications. Currently, I’m dealing with painfully stiff joints, weird bone pain, loss of libido (hubby’s fave), hair thinning (grrrr, I thought I was done with this when I finished chemo!), memory issues (wait, what?) and other side effects that I’m pretending I can ignore.

On the bright side, it is gratifying to know that what I’m experiencing is not all in my head, nor is it as bad as it could be. In fact, I found a valuable post (one of many!) on the blog Nancy’s Point, entitled “The Dark Side of Aromatase Inhibitors“. Not only is the post a great read, but what makes it so eye-opening is the comments section. Nancy invites readers to share their experiences, and wow, do they!

If you choose to venture there, keep in mind that everyone reacts differently to these medications. People with negative reactions may be quicker to share than those with less extreme reactions.

So if you’ve been told that you need adjuvant endocrine therapy following the “main” cancer treatments, do your homework. PLEASE know that not everyone has miserable side effects from them, and I strongly urge you to give the medications a try to see how well you tolerate them. You may surprise yourself. Note what side effects you’re experiencing and the date of onset so that you verify that the reaction is related to the drug.

Then, if you truly cannot handle the discomfort (no shame there!), you will be able to show why. Discuss other options with your medical team. Whatever amount you were able to tolerate will offer you that much more protection, and that will still benefit you.

For everyone else, hang in there!