Best supplements

Posted by risagee @risagee, May 27 10:56am

Hello all,
Wondering if anyone has tried Annatrol as a bone building supplement..?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

This study says Geranylgeraniol, main active ingredient, in Annatrol may be beneficial in cases of osteochondrosis of the jaw. It can have conflicting results if taken while on other bone meds.
Biggest take away: high dose Geranylgeraniol can be harmful.

One of the three authors of this study is an employee of American River Nutrition, a seller of annatrol.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9114760/

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@triciaot

This study says Geranylgeraniol, main active ingredient, in Annatrol may be beneficial in cases of osteochondrosis of the jaw. It can have conflicting results if taken while on other bone meds.
Biggest take away: high dose Geranylgeraniol can be harmful.

One of the three authors of this study is an employee of American River Nutrition, a seller of annatrol.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9114760/

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Thanks so much for your post @triciaot 🙏🏻. I’m so hoping to track down alternatives to traditional
Osteoporosis meds (my bone specialist wants me to begin Reclast), but as I’m still battling side effects from an aromatase inhibitor (had a breast cancer diagnosis last summer), I’m really reluctant to add more medication problems right now. Would be immensely grateful for any thoughts or suggestions you might share.
And happy Memorial Day to all…

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AIs can affect so many areas of the body. I’ve wondered if women who started out with a low level of estrogen have less problems as their body had already adjusted to the change. I’m right with you on not wanting to take so many meds. I was terribly non-compliant about taking recommended drugs before this whole thing started. I’m now more proactive on taking what I need to protect my body.
Reclast seems to do well to preserve current bone. @windyshores is someone to follow about bone builders if your bone density is really low.
I’ve read about so many people who ate all the right things, took all the best supplements, and did all the right exercise and still had low bone density. But bone anti-reabsorbtives and bone builders are no magic either. For myself, I don’t want to have spinal compression fractures like my mother - so I’m taking the risk with Reclast.

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Thanks so much, @triciaot !
I’m working up my courage to go forward with the Reclast infusion. I certainly hope to avoid spinal fracture 😳.

So grateful for this support site! Thanks again for your input, and for @windyshores advice as well! 🙏🏻

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@risagee

Thanks so much, @triciaot !
I’m working up my courage to go forward with the Reclast infusion. I certainly hope to avoid spinal fracture 😳.

So grateful for this support site! Thanks again for your input, and for @windyshores advice as well! 🙏🏻

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@risagree I can really relate. I did five years of letrozole for breast cancer, then 2 years Tymlos, 4 months Evenity and, soon, Reclast. Acceptance is something I work on! And gratitude for the benefits of all this against a backdrop of some side effects. Benefits vs risks and the meds have so far won out!

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@windyshores

@risagree I can really relate. I did five years of letrozole for breast cancer, then 2 years Tymlos, 4 months Evenity and, soon, Reclast. Acceptance is something I work on! And gratitude for the benefits of all this against a backdrop of some side effects. Benefits vs risks and the meds have so far won out!

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@windyshores Wow, I didn’t realize you also took Letrozole for 5 years. I’m only 7 months along in my 5 years, and struggling with sleep, anxiety and various body aches. The worst part of Letrozole, for me, is the idea that my serious lumbar spine 5-score will be exacerbated by it.
Btw, you’d asked me why my bone specialist wasn’t prescribing Tymlos or Evenity to try to build bone. She replied recently and said she didn’t think my oncologist would allow either, but suggested I ask her if she’d be okay with me taking Evenity while on Letrozole. Is this worth considering? I’m also terrified of side effects from Evenity as well — the Letrozole has really impacted my mood and sleep, and made everyday functioning more difficult. Did you take Evenity during your AI years..?
Thank you!!

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@risagee

@windyshores Wow, I didn’t realize you also took Letrozole for 5 years. I’m only 7 months along in my 5 years, and struggling with sleep, anxiety and various body aches. The worst part of Letrozole, for me, is the idea that my serious lumbar spine 5-score will be exacerbated by it.
Btw, you’d asked me why my bone specialist wasn’t prescribing Tymlos or Evenity to try to build bone. She replied recently and said she didn’t think my oncologist would allow either, but suggested I ask her if she’d be okay with me taking Evenity while on Letrozole. Is this worth considering? I’m also terrified of side effects from Evenity as well — the Letrozole has really impacted my mood and sleep, and made everyday functioning more difficult. Did you take Evenity during your AI years..?
Thank you!!

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@risagee I had osteoporosis already when I started letrozole. My endocrinologist did not want to prescribe the usual Reclast due to afib (since disproven as a risk). My oncologist was concerned about my bones and had me stop at 5 years. I did a test called the Breast Cancer Index to see if there was benefit to doing 7-10 years and it came out a flat "no" though my risk of recurrence came out as high. I am 9 1/2 years out now.

Reclast is used with aromatase inhibitors to prevent osteoporosis and is thought to have some function in preventing spread to bones. It is used for metastatic breast cancer that has gone to the bones as well.

I am not sure why Tymlos or Forteo was not suggested but I was at the time unable to tolerate Forteo. Evenity was not available yet. Perhaps at the time there was concern that anabolics might increase the chance of spread, but the thing is, with hormonal cancers, our risk goes up not down over time. And these drugs now are known not to cause bone cancer, at least in the years they have been used.

I did lose a lot of bone density on letrozole especially in the first year. The rate of loss decreased for years 2-5 but I still lose some.

Thankfully, after 2 years Tymlos, my spine is back to borderline, better than before letrozole, but I had some fractures during COVID before I got on Tymlos.

Did oncology discuss Tamoxifen with you at all? I have no idea what bone meds could be added to that. I do know some do Tamoxifen due to osteoporosis but my docs never mentioned it and if they had, I might have still chosen an AI for its benefit for my grade 3 cancer. I really didn't understand what fractures do to quality of life, and of course we don't have symptoms from osteoporosis, so my focus was on cancer.

I hope you can talk to both an oncologist and an endocrinologist about this. I don't know if Reclast is the best approach in your situation with concerning DEXA scores and an aromatase inhibitor. I would actually be more concerned about bones- something I did not understand at the time. I am hoping you can do a bone building drug like Tymlos, Forteo or Evenity. Please let us know what the docs say- important info for anyone dealing with this situation and there are many of us!

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@windyshores

@risagee I had osteoporosis already when I started letrozole. My endocrinologist did not want to prescribe the usual Reclast due to afib (since disproven as a risk). My oncologist was concerned about my bones and had me stop at 5 years. I did a test called the Breast Cancer Index to see if there was benefit to doing 7-10 years and it came out a flat "no" though my risk of recurrence came out as high. I am 9 1/2 years out now.

Reclast is used with aromatase inhibitors to prevent osteoporosis and is thought to have some function in preventing spread to bones. It is used for metastatic breast cancer that has gone to the bones as well.

I am not sure why Tymlos or Forteo was not suggested but I was at the time unable to tolerate Forteo. Evenity was not available yet. Perhaps at the time there was concern that anabolics might increase the chance of spread, but the thing is, with hormonal cancers, our risk goes up not down over time. And these drugs now are known not to cause bone cancer, at least in the years they have been used.

I did lose a lot of bone density on letrozole especially in the first year. The rate of loss decreased for years 2-5 but I still lose some.

Thankfully, after 2 years Tymlos, my spine is back to borderline, better than before letrozole, but I had some fractures during COVID before I got on Tymlos.

Did oncology discuss Tamoxifen with you at all? I have no idea what bone meds could be added to that. I do know some do Tamoxifen due to osteoporosis but my docs never mentioned it and if they had, I might have still chosen an AI for its benefit for my grade 3 cancer. I really didn't understand what fractures do to quality of life, and of course we don't have symptoms from osteoporosis, so my focus was on cancer.

I hope you can talk to both an oncologist and an endocrinologist about this. I don't know if Reclast is the best approach in your situation with concerning DEXA scores and an aromatase inhibitor. I would actually be more concerned about bones- something I did not understand at the time. I am hoping you can do a bone building drug like Tymlos, Forteo or Evenity. Please let us know what the docs say- important info for anyone dealing with this situation and there are many of us!

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Thanks so much, again, @windyshores ! Did you experience side effects from the bone builders? It seems every drug has risks that sound scary…particularly as I’m already struggling with leteozole’s impact on my day to day functioning.
I’ll be seeing my oncologist in a couple of weeks and will ask her if I can take Evenity while on Letrozole (which my bone specialist/endocrinologist suggested I ask). Will keep everyone posted!

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@risagee

Thanks so much, again, @windyshores ! Did you experience side effects from the bone builders? It seems every drug has risks that sound scary…particularly as I’m already struggling with leteozole’s impact on my day to day functioning.
I’ll be seeing my oncologist in a couple of weeks and will ask her if I can take Evenity while on Letrozole (which my bone specialist/endocrinologist suggested I ask). Will keep everyone posted!

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@risagee we all react differently. Tymlos was very tolerable for me.

I am glad you are taking care of your bones while on letrozole. Your oncologist may want Prolia or Reclast/Zometa because of the cancer-protective aspects of those drugs, but I hope you can take whatever you choose- depending on your DEXA scores.

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