feeling defeated with severe osteoporosis

Hi Everyone,

I have not been here for awhile but today I got some bad news and decided I needed to get back here and research some more. to give you a little bit of information about my history. I am 62 yrs old and In 2017 I had Invasive ductal carcinoma in one breast. I had a bi-lateral mastectomy with reconstruction. no chemo or radiation since lymph nodes were clean. I was stared on anastrozole for my breast cancer and fosamax for my osteoporosis. I take calcium and vitamin D. well today I went back to my endocrinologist after having my bone scan after 2 yrs. I am now in severe osteoporosis. I feel like I'm treading water backwards here since I know the anastrozole causes bone loss. I have lost ground on the fight. I have not been good about exercise but will now start walking 30 minutes a day. my hips are the worst. I guess I just needed to come here an ask if anyone has found a good way to naturally help bone. I see my oncologist nurse in January and will see what she recommends. Maybe try a different drug that doesn't attack my bones. I just feel defeated

Agree with Meow12. My MO prescribed tamoxifen for me since I'd fractured my pelvis before the breast cancer dx. He also sent me to an endocrinologist who dx'd osteoporosis, not osteopenia as originally thought. I'm on Prolia for the osteoporosis, so you may also want to see about a different bone drug too. But yes tamoxifen doesn't weaken your bones.

thanks edj3,

I saw my endocrinologist yesterday after having a ton of tests done. He determined there was no underlying cause for my osteoporosis. We did discuss going on a different drug. There is a brand new one on the market that just came out in May. It not only stops the breakdown of the bones but also builds up the bones. A lot of drugs that build bone come with a chance of bone cancer but this one doesn't I guess. It's brand name is Evenity. I am going to try and read up on this one.

Didn't know there is another new drug! Will be looking to see if you choose that one and how you make out with it. It says it is given monthly. Good luck.

I too fear I am losing the bone battle. I am 58. First, I don't think switching to Tamox. will be agreeable to MO with family history of heart attacks and strokes. I still have all my lady parts too. God knows we don't need to be waking them up! I'm done with them and I've had no issues since going thru menopause----LOL Second, I was diagnosed just before BC with osteoporosis in my hip and osteopenia in spine. I can feel my spine getting worse. Exercise does help. I am set for a DEXA in a few weeks and I am already prepared for another failing grade. I see my MO after that and the plan for me is Prolia. I also recently read where some folks are getting treated with Reclast before Prolia now. I do know it's not good to just stop it, there needs to be a plan in place.

muska, any side effects from Prolia? Do you have an exit plan?

No side effects from Prolia so far. The exit plan after four years on Prolia, is:

- bone density scan after last Prolia shot (to get a new baseline)

- one shot of a 'regular' bisphosphonate six months after the last Prolia

- follow-up bone density scan about two years after the last Prolia

- if significant bone deterioration two years after discontinuing Prolia, switch to tamoxifen

Well now you guys have me scared lol. I was started on Femara 2 years ago. I had a DEXA scan back then and had some osteopenia in my left hip. I have a DEXA scan scheduled in December. I have been taking fosomax along with Femara, but I've read a few stories where Fosamax didn't help. Ugh I guess I will find out. I do walk twice a day every day for about 45 minutes each walk. Hope that helps.

Nancy

muska.... Hmmm I did not know that about Prolia! Thanks for sharing that information.

I have osteoporosis in my hip. I had somepainful episodes last year but none since then. My MO prescribed Arimidex when I was DX in 2011. It attacks the bones and I already had osteopenia. She switched me to Tamoxifen after one year because I complained. Idk how much damage had already been done to my bones by then.

I take Boniva one a month, Vitamin D, calcium tablets (2kinds). My internist suggested the Prolia shot 2x a year. It’s pricey and I read some ladies had bad side effects. Doesn’t mean I would but still considering side effects. Thankfully I’m off tamoxifen.

Diane

muska unless things have changed in 2 years my insurance denied my Oncologist’s request to put me on Prolia. 1) because I didn't have osteoporosis, but osteopenia and 2) because they said I had not tried any of the other bone strengthening medications. Now if I had osteoporosis that might be a different story. I have a dexascan next month and we shall see where I’m at

Nancy

Obviously, different insurers have different rules but most major insurers do cover Prolia in women who are on AIs after BC diagnosis and have demonstrated bone loss. As an example, please see Cigna Prolia Authorization form.

Had my bone density test today. Should know results in a week. I already have osteoporosis. Ugh.

Diane

edj - if you have your Prolia shots at an infusion center ordered by the MO or at a doctor's office - it is usually not covered under the drug formulary sections. My shots every 6 months are covered because it was the cancer treatment that threw me into osteoperosis and it's not a drug that the pharmacy fills for me to take at home. Maybe that will work.

It is good to know that Boniva plus calcium & vit D helps - I've not been good about doing the boniva and am starting to do it every month on schedule.

Dorothy - I’m diligent about taking Boniva but not the calcium tablets, etc, as much. Obviously Boniva helps - at least in my case it did. I am going to do better about taking them because every little bit helps.

Osteoporosis is horrific so whatever you have to do to prevent getting it -do it. There were times I couldn’t sleep because of the pain in my hip. Not so much anymore thankfully.

Diane