Who is managing your bone health, oncologist or endocrinologist?

Posted by Zebra @californiazebra, Aug 16 12:49am

I’m a breast cancer patient on Letrozole for 5.5 years so far and 10 year goal. 2 years ago I had osteopenia and my oncologist wanted to put me on Zometa, but said ask your endocrinologist. My endocrinologist said no, he would do Prolia first and only when I have osteoporosis because Medicare won’t cover for osteopenia. So I haven’t been on anything. I’m reading that Medicare will cover those drugs for AI drug induced osteopenia (true?) and that oncologists choose Zometa for breast cancer as protection from cancer spreading to bones (true?). I feel like the two specialists need to talk so I get the appropriate treatment. Oncologist just told me to have my endocrinologist order DEXA that is due and manage my bone health. Endocrinologist says he can order but it won’t be covered since he has no history on that for me. I feel like a ping pong ball so I’m wondering who is managing bone health for other breast cancer/AI patients. Thanks for any input.

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myoga | @myoga | Aug 20 4:36pm

In reply to @californiazebra "@mistymar I take 2000 IU D3 so the 100 K2 would likely be sufficient. Thanks for..." + (show)

@californiazebra
I take 1000 IU D and 45mcg K2. I eat salmon bone for calcium and exercise. That seems to work for me. My last Tscore went up about 9%, but my lumbar t score still went down. So now I need to do weight training. I will know next year if that’s good enough.

Zebra | @californiazebra | Aug 20 7:12pm

In reply to @myoga "@californiazebra I take 1000 IU D and 45mcg K2. I eat salmon bone for calcium and..." + (show)

@myoga
Thank you. I’ve only been doing DEXA every 2 years. I think someone on here said it’s covered every year if on AI. Is everyone doing the scan yearly?

myoga | @myoga | Aug 20 9:03pm

In reply to @californiazebra "@myoga Thank you. I’ve only been doing DEXA every 2 years. I think someone on here..." + (show)

@californiazebra
I don’t know if there’s protocol for yearly Dexa while taking AIs. My onco was suggesting every 2years, she said AI wouldn’t affect bone density that fast. But I requested Dexa scan a year later and it went from -1.3 to -1.7. So she gave me Dexa scan every year for three years now. My last one showed improvement on hip neck that was from -1.7 to -1.3, but my lumbar went down to -1.7. So I need to work on it. I’m trying to do lumbar spine strengthening. If you are trying something new to improve it, then you would want to know if it helps sooner rather than waiting for 2 years to find out. One thing I notice is that walking/ running is only maintaining your bone density at best. It’s not as effective to improve bone density as weight training. I heard some doctors even order zometa for osteopenia patients on AIs because it can prevent cancer metastasize to the bone. Should I ask for it? Anybody has experience with zometa and side effects?

Rubyslippers | @triciaot | Aug 20 10:03pm

I have been doing a DEXA every year. Just had 4th Reclast, the same drug as Zomata, but only 5 mg a year. Zomata is often multiple times a year at 3-4 mg each.
I did not have any real side effects this time, maybe a little body discomfort not aching, for 24 hours.

With the first 2 doses I had mild flu like symptoms 30 hours after the infusion lasted of couple of days. After the 3rd infusion my eyes ached for about 20 min then cleared. I set up an ophthalmologist appointment immediately following the 4th infusion in case I had eye problems. He said my eyes showed no effects.
I was at osteoporosis, now at osteopenia.

Zebra | @californiazebra | Aug 20 10:12pm

In reply to @myoga "@californiazebra I don’t know if there’s protocol for yearly Dexa while taking AIs. My onco was..." + (show)

@myoga
I agree that you need to know sooner rather than later if what you’re doing is working.

I walk a lot but that’s mostly what I do. Cardio sends me into afib and neuro and other issues make weights or resistance risky. It always seems the treatment for one disorder exacerbates another. I’ll have to start slowly and hope it’s enough to help. Best of luck with your weight training. ❤️

myoga | @myoga | Aug 21 5:31pm

In reply to @californiazebra "@myoga I agree that you need to know sooner rather than later if what you’re doing..." + (show)

@californiazebra
Thank you. I’m not doing heavy weight lifting. I’m doing deadlift with 10 lbs weight, more repetitions. I also do yoga poses which use your own body weight instead of dumbbells. Just make sure you have a trainer so you don’t strain or hurt your back. Try 5lbs first to see if that’s ok. Start slow and build up as you go. Even little things helps if we do everyday. I probably skip Dexa this year due to my hemorrhoidectomy (worst recovery I’ve experienced) But I will start again after I’m clear. Take care.

Zebra | @californiazebra | Aug 22 4:01am

In reply to @myoga "@californiazebra Thank you. I’m not doing heavy weight lifting. I’m doing deadlift with 10 lbs weight,..." + (show)

@myoga
Hang in there. Sending prayers your way. ❤️

carklo | @carklo | Aug 23 8:11am

I chose not to do hormone therapy because I came into my cancer journey with osteoporosis. I take calcium/vitamin D supplements plus eat a mostly organic diet with tons of meat protein and a concentration of high calcium and vitamin D foods, and I limit my carbs. I also do some weight training and get plenty of exercise, in general. I am 2 years into remission, and my bone density rose 5% last year., plus all my lab levels are in the normal range, including blood pressure, cholesterol, etc. I feel fantastic! I am 64 years old and am quite thin at 5'7" and around 128 pounds, with very thin bones, so the weight training has really helped me maintain bone mass. I am not on any prescribed medications, which I'm thrilled about!

Zebra | @californiazebra | Aug 23 12:55pm

In reply to @carklo "I chose not to do hormone therapy because I came into my cancer journey with osteoporosis...." + (show)

@carklo
Congrats! Sounds like things are going very well for you. Keep up the good work!

brightlight66 | @brightlight66 | Aug 24 7:08am

In reply to @carklo "I chose not to do hormone therapy because I came into my cancer journey with osteoporosis...." + (show)

@carklo Thank you for sharing! May I ask what kind of breast cancer you were diagnosed with? I also came into my cancer journey with osteoporosis and have been taking Anastrozole with Verzenio for about a year as I was diagnosed with Invasive Lobular Carcinoma 2B and my oncologist feels that I'm high risk.
Due to weight training, wearing a weighted vest, jump training, AlgaeCal and a clean protein forward diet, I improved my osteoporosis numbers by 2%. I refuse the osteoporosis meds, and so far the strength training has been a huge help. My goal is to reverse the osteoporosis to osteopenia in 2 years.
The Anastrozole causes Trigger Fingers, so I only take it 3X/week as I'm tiny...105lbs and 5'2". I'm determined to maintain bone mass and am SO happy you are not on any medications. I can't wait to be off them.