One less thing to worry about for the time being
The ultrasound of my thyroid showed no signs for additional concern, and being able to have the scan done locally instead of driving to Duke was incredibly helpful.
The July 24, 2024 appointments
Today I had several appointments at Duke, two of which were diagnostic in nature - a DEXA scan and a stress echocardiogram. Both were necessary in order to evaluate the effect Letrozole is having on my body.
My first appointment was the DEXA scan, followed by a visit with the endocrinologist. Unfortunately, the DEXA scan showed significant bone loss in my back, as well as new bone loss in my hip and neck. There had been some bone density loss in my lumbar spine prior to starting Letrozole (which was noted on last year’s DEXA results), but this year’s scan revealed a 10% loss in the L1-L4, moving me closer to osteoporosis.
Though the bone loss in my neck and hip isn’t significant at this point, it does indicate Letrozole is affecting my bone density in a negative way, despite diet, exercise, and supplements.
Because oncology would like me to take Letrozole indefinitely, this is concerning to the endocrinologist.
I declined making any decisions today regarding treatment, but the endocrinologist advised that I begin researching bisphosphonates. There are a number of options, including oral, IV and injection. I am hesitant to begin using another prescription, so I am weighing all the options, including whether or not I will continue with Letrozole (something I will discuss with Dr. Rossi when I see her on August 12, the same day I have labs and my next CT scan).
I am part of an amazing group of GCT Survivors on Facebook, and I am seeking advice from them, as many of them have first-hand experience with having to work through these issues for themselves.
I went from endocrinology to cardiology for the ECHO. And that is the good news. Everything was just fine with my heart function and all images looked normal. I even got a mini-workout in as they tried to get my heart rate up to 150 bpm.
I am so thankful the echocardiogram was normal because that’s one less thing to be concerned about.
This health care journey is not one I ever thought I would be walking, but every time I leave a Duke medical facility I am once again grateful for the expertise and quality of care that is available.
We’ll see what the August 12 appointment brings.
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).
The privilege of compassion
Suffering hadn’t shrunk their hearts, you see. It had expanded their capacity for compassion. The more stories of suffering I hear, the more I understand that our humanity places each of us on a spectrum of suffering...
Our experiences of suffering are best leveraged when they make us more aware of other people’s pain.
Suffering grants us the hard-won privilege of compassion.
Katherine Wolf, Treasures in the Dark
It’s my anniversary!
This journey began on May 2, 2019, when I had my first surgery here in Wilmington. Last year on this same date, I had my second surgery - the big surgery - at Duke University Hospital. Two life-changing surgeries. One date - 4 years apart.
How thankful I am for the excellent care I have received through the years and the kind support of family and friends through it all.
Today I am reflecting on the goodness of God, and I'll be listening to this "Just as Good" (Chris Renzema) on repeat.
And I will build an altar
And stack it stone by stone
'Cause every Ebenezer says I've never been alone
My faith will surely falter
But that don't change what You've done
'Cause every Ebenezer points to where my help comes from.
Thoughts from Robert Brault
Why be saddled with this thing called life expectancy? Of what relevance to an individual is such a statistic?
Am I to concern myself with an allotment of days I never had and was never promised? Must I check off each day of my life as if I am subtracting from this imaginary hoard?
No, on the contrary, I will add each day of my life to my treasure of days lived. And with each day, my treasure will grow, not diminish.
Robert Brault
The April 22, 2024 appointments
I had three appointments at Duke on April 22. Here’s a quick update.
My first appointment was with Dr. Rossi at 10:30 a.m. We had a great visit as we talked about the present - and the future. I’ll have a CT scan at my next visit.
Then I went to the lab at 11:30 to test Inhibin A, Inhibin B, AMH, and to do a CBC.
These results were almost instant. We have no idea what was causing the low RBC Count before, but my RBC Count is fine now.
Then Rick and I had lunch at Pure Vegan, per the usual.
Cardiology was at 2:30 at the Raleigh location. It was a positive visit with Dr. Deepa Upadhyaya. She’s confident I do not have any major heart issues. She believes the accelerated heart rate I am experiencing when exercising might be a neurological result of the surgery last year, but just to be safe, she wants me to return for an exercise stress echocardiogram in July.
And today I received this amazing news. 🙌
I'm NED!!
Next up?
DXA Bone Density (to make sure Letrozole isn’t having an excessively negative effect on my bone density) and the ECHO Stress test -July 24
CT with contrast/ Dr. Rossi - August 12