Breast cancer treatment and osteoporosis

Posted by jknows @jknows, Feb 24 8:06am

I was diagnosed with triple negative breast cancer in February 2023. I received the Keynote 522 protocol that includes chemo, surgery and immunotherapy. I just had a repeat bone density test and discovered I have moved from osteopenia to osteoporosis. Is this a common outcome from BC treatment and if so how is the osteoporosis treated?

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@petal

That’s a really good question! I personally do not know anyone or have read any research on the percentage of people who DID NOT not get osteoporosis after 5 years of AI treatment. Especially for post menopausal women. I have a friend in her forties who who got Osteoporosis after 5 years on Tamoxifen. Asking Mayo Clinic, do you have any research or statistics? Thank you.

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I have a friend on another BC site who is 80, exercises daily with weight bearing exercises, and takes D + K4 and was able to increase bone density.
Her oncologist was pleased.
She takes an AI but no osteoporosis meds.

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@timely

I have a friend on another BC site who is 80, exercises daily with weight bearing exercises, and takes D + K4 and was able to increase bone density.
Her oncologist was pleased.
She takes an AI but no osteoporosis meds.

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@timely so she was not on tamoxifen, right? How bad were her scores? My bone density plunged on an AI without Reclast.

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@beachbabe

Has anyone taken Anastrozole or other AI without taking a bisphosphonate and had no significant change in bone density? Could taking calcium and Vitamin D3 alone plus exercise maintain bone health?

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I wish! One year into Letrozole and into osteoporosis - started Fosamax and I was so hesitant but endocrinologist say way too high spinal fractures!

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@windyshores

My bones worsened on aromatase inhibitors so I cannot comment on the consequences of TNBC treatment like yours.

I do suggest a bone builder like Tymlos, Forteo or Evenity before doing a bisphosphonate (Reclast. Zometa, Fosamax etc.) or Prolia. I did Tymlos because the dose was adjustable, and am now doing Evenity before locking in gains with Reclast.

Cancer docs may suggest Reclast or Zometa though. There is some info on possible preventative effects with cancer that I cannot confirm but your docs can comment on that.

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My endocrinologist never mentioned anything g but Fosamax or Reclast to start! He is very well respected at MGH-Boston so I wonder why he never mentioned the bone builders you mention?!!

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@sessioja

I have visited 5 different docs now all have insisted on biophophates Reclast being the most recommended The last endocrinologist said no to bone builders because I had radiation. Was that an absolute no for you? Did you not have radiation? Did you. have to go against his advice to use Tymloos?
I’m scared either way
jas

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Same! I had radiation but MGH never mentioned anything but Fosamax or Reclast?!

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@ssmab

I'm sorry you have the osteoporosis Osteoporosis issue too. I had one TNBC stage 1a tumor and one ER+PR+ Her2- stage 1a tumor in the other breast diagnosed 12/22 at age 70. I had a low Ki67 or 5%. I also have osteoporosis. Went to Mayo Rochester for treatment. Double mastectomy, clear margins, no node involvement. No chemo, on Tamoxifen even tho I am way past menopause for the ER+ because Tamoxifen builds bone. I also receive Zometa infusions for the osteoporosis 2x a year for 3 years. The Mayo Oncologist told me that Zometa can help to avoid recurrence in breast cancer patients and that why they give Zometa. He said studies show that women who have had breast cancer and have been on Zometa have a higher 10 year survival rate. So I thought great! I'll take that. I am exercising, eating 7-9 fruits and vegs a day and avoiding alcohol and processed meats as I was told these things would help to avoid recurrence. That info is from the Breast Cancer Survivorship area at Mayo. Sending Love and healing wishes to you and all on this site❤️

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So helpful! I decided to hold off on Reclast which I think is Zometa and started Fosamax weekly bill a month ago as side effects seemed slightly less but maybe I should start with Zometa as Letrozolf has done a number on my bone density after only one year! Given that you have 2 infusions a year is that split dose which I hear might be “easier” and less side effects! Is that why 2 a year?

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@semurrey

My endocrinologist never mentioned anything g but Fosamax or Reclast to start! He is very well respected at MGH-Boston so I wonder why he never mentioned the bone builders you mention?!!

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@semurrye I am sure your endo knows what they are doing 🙂

Reclast, Zometa and Fosamax all might have protective effects with cancer.

They are used to combat bone loss with aromatase inhibitors but triple negative cancers aren't on those meds. That is why I said I did not know about bone meds for TNBC.

And your bones may not be bad enough to need bone builders,

I "misspoke" above and meant to say that in general bone builders are suggested before bisphosphonates but in the context of TNBC, I would trust your oncologist and endocrinologist and apologize for not being clear.

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@semurrey

So helpful! I decided to hold off on Reclast which I think is Zometa and started Fosamax weekly bill a month ago as side effects seemed slightly less but maybe I should start with Zometa as Letrozolf has done a number on my bone density after only one year! Given that you have 2 infusions a year is that split dose which I hear might be “easier” and less side effects! Is that why 2 a year?

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Hi Sue Ellen,
It's the full dose just 2x a year for 3 years so a total of 6 infusions. I believe the normal dosage if you have not had breast cancer is one infusion a year but I'm not sure for how many years.
I will have my 3rd infusion April 9th at Mayo.
For my first infusion last April of '23, I hydrated well as they told me to for a couple of days before the first infusion. I had my infusions in the slow manner, over 30-45 minutes. I ended up having flu like symptoms for a few days that first time.
In October of '23 for my second infusion again I hydrated well but a couple of days after the infusion I got dizziness from that one. No flu symptoms tho. I called Mayo and the oncology nurse told me to drink an electrolyte drink like Gatorade or Pedialyte for a few days to help get rid of the dizziness. That helped.
Now I see a few gals are mentioning on Connect that they drink 2 Gatorade (or Pedialyte) the day before the infusion, and take 2 Tylenol that night.
Then the day of the infusion drink one Gatorade and take 2 Tylenol that morning. That will be my new strategy for my next infusion! Hoping this 3rd dose will be better.
I had fractures before I started Zometa. Those are the pits so I sure do need bone building drugs. Since they can also help keep recurrence away in the bones, I will take them! Good luck to you❤️

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@ssmab

Hi Sue Ellen,
It's the full dose just 2x a year for 3 years so a total of 6 infusions. I believe the normal dosage if you have not had breast cancer is one infusion a year but I'm not sure for how many years.
I will have my 3rd infusion April 9th at Mayo.
For my first infusion last April of '23, I hydrated well as they told me to for a couple of days before the first infusion. I had my infusions in the slow manner, over 30-45 minutes. I ended up having flu like symptoms for a few days that first time.
In October of '23 for my second infusion again I hydrated well but a couple of days after the infusion I got dizziness from that one. No flu symptoms tho. I called Mayo and the oncology nurse told me to drink an electrolyte drink like Gatorade or Pedialyte for a few days to help get rid of the dizziness. That helped.
Now I see a few gals are mentioning on Connect that they drink 2 Gatorade (or Pedialyte) the day before the infusion, and take 2 Tylenol that night.
Then the day of the infusion drink one Gatorade and take 2 Tylenol that morning. That will be my new strategy for my next infusion! Hoping this 3rd dose will be better.
I had fractures before I started Zometa. Those are the pits so I sure do need bone building drugs. Since they can also help keep recurrence away in the bones, I will take them! Good luck to you❤️

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Regarding Zometa infusions: Initially I was told to take Zyrtec the day before, hydrate, and Tylenol as needed. I'm on blood thinners etc. now and mostly should not take any NSAIDs, nor most pain medications. Tylenol in general has never really been helpful for me, unless in super high dosage as given in hospital.
However, I've been lucky. After 1st infusion with no side effects at all, all I do now is moderately hydrate (when you're tethered to the infusion line you don't want to be desperate for bathroom break), and let it go at that. So far 4 rounds of Zometa with no side effects - other than some improvement in DEXA scan.

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@windyshores

@semurrye I am sure your endo knows what they are doing 🙂

Reclast, Zometa and Fosamax all might have protective effects with cancer.

They are used to combat bone loss with aromatase inhibitors but triple negative cancers aren't on those meds. That is why I said I did not know about bone meds for TNBC.

And your bones may not be bad enough to need bone builders,

I "misspoke" above and meant to say that in general bone builders are suggested before bisphosphonates but in the context of TNBC, I would trust your oncologist and endocrinologist and apologize for not being clear.

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I appreciate all you offer! I have ILC and so wonder why doc didn’t mention bone builders-I’m at -2.7!
Thx again! I’m so stressed about this Fosamax as already have joint pain from Letrozole and now have a “heaviness” in legs that sometimes wakes me around 3am. I’ve been on Fosamax for about one month!

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