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

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.

One week with Letrozole

After much research, debate, and prayer, on June 30 I picked up a 90 day supply of Letrozole from the pharmacy, and I dove in, taking my first dose about 6 p.m. that evening.

By 8 p.m. I couldn’t hold my eyes open any longer, and I slept through until about 4:30 the following morning.

Here’s how the rest of the week went:

• July 1, Day 2 - Woke up a little achy and feeling like I have jetlag, but after walking for an hour at the beach, I feel back to normal. Rick and I drove to Fort Caswell and biked for almost an hour later in the day. I felt tired this afternoon and napped.

• July 2, Day 3 - I woke up groggy and with minor pain on the bottoms of my feet. I would compare it to how my feet feel after a long run.

• July 3, Day 4 - Definitely think the meds make me drowsy. I need to take the pill no more than 30 minutes before I go to bed. Still experiencing pain in bottoms of my feet.

• July 4, Day 5. No noticeable side effects when I woke up. Slight neuropathy in feet at different times during the day.

• July 5, Day 6. No noticeable side effects when I woke up. However, Rick and I traveled from Wilmington to Portland, OR, today. A great deal of neuropathy in my feet as the day went on. No amount of walking or standing helped, though I walked laps in both ATL and SLC during layovers.

• July 6, Day 7. No noticeable side effects when I woke up. No side effects throughout the day.

• July 7, Day 8. No noticeable side effects when I woke up. However, after taking a morning hike, I came back and slept seven hours … until roughly 1:45 pm. I can't say for certain it was the Letrozole, but anyone who knows me knows this isn't normal.

I'll post another update after more time passes. However, if this is the extent of the side effects I’ll be experiencing, they are definitely manageable and worth the potential benefit for me.

Time will tell.

Medicine is considered a kindness from God. - Kayla Sanders

When the choice is not clear

As I was parking at Wrightsville Beach this morning, I ran into someone I haven’t seen since surgery. She gave me a hug and asked how I was doing. I got emotional in the moment, and that really confused me.

It took me some time walking at the beach before I realized why I got teary-eyed. I am thinking constantly about whether or not I should go on Letrozole, and I think that’s causing me more anxiety than I realized.

Up until this point, the “next step” has been pretty clear. Surgery was a given. Switching my care to Duke wasn’t much of a choice. Deciding against chemo was easy after research.

But Letrozole is different. There is conflicting clinical evidence. There is conflicting anecdotal evidence among those who have used Letrozole.

There’s no easy choice here. No strikingly right answer.

I feel great right now. But we know I still have cancer in my body. Do I give up the health I currently have in order to perhaps have better quality of life in the future?

Letrozole has a multitude of harsh side effects for many people. But for some people it does not.

Letrozole could possibly keep me from developing more tumors for a substantial amount of time. Or it might not.

I am not currently at peace with going on Letrozole. But I also do not have to make that choice today. I will, however, have to make a choice soon.

So for those of you who’ve asked me in recent months how you can specifically pray, here it is:

Pray that I will make the choice that is best for me, and that once I make that choice, come what may, I will not second-guess the decision.