This week’s question - Lupron

Many friends have asked, “So, how’s it going with Lupron?” I want to keep track of any side effects here, just like I did when I started taking Letrozole in June of 2023.

For the first seven days after taking Lupron (and continuing to take Letrozole), I did find myself feeling emotional (read: weepy) quite a bit and at times feeling a sense of dread (read: anxiety). Neither of which is normal for me, but I have had a lot going on. So, it could be the buildup of stress - or it could be the Lupron/Letrozole combo - or it could be both. The other potential side effect has been fatigue, but again. I’ve had a lot going on, and we had the return to Eastern Standard Time this weekend. That could explain the fatigue, as well.

Regardless, it has been tolerable.

My First Lupron Injection

I received my first injection of Lupron today, October 28. It was a painless injection in my hip. I really didn't feel a thing.

I'm hopeful the days ahead will be equally uneventful, but just like I did with Letrozole, I will post regular updates on how I am feeling on Lupron and (eventually) whether or not it is efficacious for me.

Two years with Letrozole - June 2025

Two years ago I was wrestling with the question of whether or not to begin taking Letrozole. My May 2023 post-op pathology report had revealed the following:

Combining this information with the fact that I had my first surgery for GCT in 2019 and had already recurred less than 4 years later, going on Letrozole seemed to be the best course of action for my situation.

I was anxious about starting Letrozole, and so I began keeping a diary of sorts. That turned into several posts here on the blog, information I hope helps other women facing the same choice.

Despite the fact that my Inhibin A, Inhibin B and AMH are elevated, we have decided to continue with Letrozole for the time being. It is now a part of my daily routine, I don’t have any great adverse side effects, and we still believe the potential benefits are greater than any risks at this point, though I do question have effective it actually is for me since it would seem I am entering into another recurrence.

Letrozole and Running

By and large, my experience with Letrozole has been much easier than anticipated. One of the side effects I had noted was an overly elevated heart rate when running. As this is not a common side effect of Letrozole, my oncologist referred me to a cardiologist who did an echocardiogram. (The results were normal.)

I have recently wanted to run more, and thanks to my daughters-in-law I have found that a run-walk method of running is working well to keep my heart rate in check, while still covering the miles in a timely manner.

We’re doing a half marathon together in just over a week. I can hardly wait, and I am thankful that this small change in how I run has made all the difference in my ability to continue to engage in an activity I love.

Diet matters

The following is a post I shared with my GCT sisters in our private group:

Good morning, Ladies!

The last month has been kind of crazy, and there were days it was hard to eat fresh because of travel or family visiting or parties, etc. Though I attempted to stick to my plan, there were days I convinced myself that a bite of dessert wouldn't hurt, a few Doritos were no big deal, that eating a few grapes was as good as a big, leafy green salad, that having a beer with a friend "just this once" would be okay.

Also over the last month I noticed my joints were hurting more than usual. I even contacted my doctor to ask, "What's going on? Why am I having these side effects after a fairly easy year with Letrozole?" It got to the place I was having trouble walking because my feet hurt so much.

It never occurred to me that the "little cheats" were having big consequences for me.

But this week life slowed down. I went to the market and got fresh produce day-by-day. There have been no parties, no excuses, no "one bites."

And guess what? I realized last night I feel so much better. My joints, though still painful, are the "normal" Letrozole painful, not the "I can't deal with this" painful.

Just thought I'd share. I guess this confirms that, at least for me, dietary choices (even small ones) seem to have a huge impact.

One Year with Letrozole- June 2024

It’s hard to believe it's been a year. On Friday, June 30, 2023, I had one last conversation about Letrozole with a caregiver at Duke before I went to CVS and picked up the prescription. I took the first dose that night.

I've chronicled my journey with Letrozole over the last 12 months. These are the links:

How do I feel after a year? I have to say that the joint pain, particularly in my feet has increased substantially in recent weeks, but, overall, I can’t complain. I’m just moving a little more slowly and with a little more difficulty than before.

One of the potential side effects of Letrozole is bone density loss. My next DEXA scan will be on July 24. If there is no evidence of bone density loss, I will most surely continue with Letrozole. If there is evidence of significant bone density loss, Dr. Rossi and I will have to decide together whether to continue with Letrozole or change the method of treatment for me.

Am I happy I chose to take Letrozole? The answer is a definite yes. All in all this year with Letrozole hasn’t been that bad, definitely not as bad as so many of the warnings would have indicated. There is currently no evidence of disease in my body, and that was the goal.

I have my next CT scan in August, and I'm anticipating to another great report.

Until then I will continue to make healthy food choices, take the advised supplements, and keep moving (the best therapy for the aches and pains in my joints and muscles).

9 months with Letrozole

Letrozole and I celebrated our 9-month anniversary over the weekend, and I can say, “So far, so good.” I had the thought this weekend, “Why was I so afraid of starting this?” The side effects I experienced in the beginning are no longer an issue, and my body has acclimated to the “new normal.”

The only real concern right now is that I am experiencing an excessively high heart rate (greater than 170 bpm) when engaging in moderate exercise. Because of that, I have a referral to a cardiologist on April 22, the same day I’ll see Dr. Rossi and have labs.

However, I feel fine while exercising. I am not short of breath or anything like that, so this referral is simply to rule out any issue versus being an actual concern at this point.

Here are previous posts regarding Letrozole for those who are researching it for themselves.

90 days with Letrozole

When I made the decision to begin taking Letrozole, both my physician and a number of women who are on the medication told me to expect:

• Neuropathy in my hands and feet

• Muscle or joint pain

• Hot flashes

• Night sweats

• Edema

• Dizziness

• Weight gain

• Loss of appetite

• Digestive issues

• Hair loss

• Insomnia

• Fatigue

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Thus far, my experience with Letrozole, however, has been fairly easy, and given the potential for positive results, I am thankful that this is the treatment option Dr. Rossi and I agreed upon together. Of course, we won’t know about bone density loss for some time, but I am under the care of an endocrinologist who plans to monitor my bone density yearly, and for that I am thankful.

If I had to rank these side effects in order of how they have affected me, it would look like this:

1. Fatigue and insomnia. I have learned to take my medication no more than 30 minutes before I want to go to sleep because it definitely puts me to sleep. However, I often find myself waking up between 1 and 2 a.m., and it’s generally difficult to get back to sleep. This is probably why I often feel tired during the day, and I frequently take an early afternoon nap.

2. Neuropathy in my hands, feet and legs. I have experienced muscle and joint pain, as well, though not so much as to keep me from exercising. In fact, exercising has been my coping mechanism when it has been bad. Some days are worse than others, and mornings are generally worse than other times of the day. But it’s all bearable.

3. I’ve had my fair share of hot flashes and night sweats, but they’re more annoying than anything else. And, of course, I’d be having those anyway, even if I weren’t taking Letrozole.

4. Edema has been the latest annoying side effect. It’s becoming uncomfortable to wear my wedding band some days. But on other days, I don’t feel like I am swelling at all. I can not identify a pattern or causation. The edema I have experienced seems to be random.

5. I have not gained weight. In fact, I’ve been steadily losing weight. I think this is because of the diet I am choosing to eat (think rabbit food) and the fact that many days my appetite is less than it used to be.

6. Dizziness. I have low blood pressure, so I can’t say if this is any worse than it’s been before.

7. Digestive issues. I have not had many digestive issues, but I attribute that to my diet more than anything else. I have become a big fan of a cold pressed ginger juice with cayenne pepper, and exercise surely helps, as well.

8. Hair loss. I’m definitely experiencing this, though so far I think I am the only one who has noticed it. Again, this was to be expected after surgery, so I can not attribute it directly to Letrozole.

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I share this information in hopes of helping someone else who is debating whether or not to go on Letrozole. As I have said before, each woman’s experience with GCT is different. This might not be the right option for someone else, but, for now, I believe Letrozole is the right option for me.