Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: Nov 22, 2019 12:11AM
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 defeatedLog in to post a reply
Posts 1 - 30 (43 total)
Nov 22, 2019 05:51AM edj3 wrote:
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.
Nov 22, 2019 10:11AM kmb4 wrote:
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.
Nov 22, 2019 10:23AM DorothyB wrote:
I will have to read up on Evenity - is it also a hormone blocker?
My MO has me on tamoxifen because of my osteoporosis.
I recently started taking some of my calcium supplement as "plant based" to see if that helps - will switch to plant based after I'm done w/ my current bottles of regular calcium. Also is supposed to help if you take calcium with magnesium in addtion to the Vit D
Nov 22, 2019 11:17AM ctmbsikia wrote:
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.
Nov 22, 2019 01:27PM muska wrote:
Kmb4, Prolia could help you greatly. Please discuss with your oncologist.
I started Prolia two years into AI therapy and when my bone scan showed increased osteopenia. Two years and 4 Prolia shots later my bone density was better than the baseline taken before chemo. My 8th Prolia will be in Feb 2020.
Nov 22, 2019 01:35PM ctmbsikia wrote:
muska, any side effects from Prolia? Do you have an exit plan?
Nov 22, 2019 02:11PM ElaineTherese wrote:
I'm also on Prolia. I have graduated from full-blown osteoporosis (high risk of fracture) to osteopenia in two years. I don't get any side effects from Prolia, and I will take it as long as I'm on Aromasin (only 6 more years!). Good luck!
Nov 22, 2019 02:20PM muska wrote:
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
Nov 22, 2019 05:46PM Nancy2581 wrote:
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.
Nov 22, 2019 07:47PM muska wrote:
Nancy, my first two years on AI and without Prolia, I exercised regularly, lifted weights, etc. Despite all that, bone density decline was noticeable. But bone density was not the only or even the main reason - for me at least - in decision to start Prolia. Studies have shown lower incidence of bone mets in women who are on Prolia.
Nov 23, 2019 04:33PM Nancy2581 wrote:
muska yes my oncologist wanted me on Prolia for that reason, but my lousy insurance denied it and said I hadn't tried any of the others first. I was peeved. So I guess now if I have osteoporosis (hopefully not) they will have to pay for it. Grrrr.
Nov 23, 2019 10:07PM edwards750 wrote:
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.
Nov 24, 2019 08:42PM muska wrote:
Ladies, with regards to insurance coverage of Prolia please check with your insurer. Mine covers 100% (I have a regular plan through my employer.) I think most major insurers now cover Prolia for patients with BC history who are on an AI and have demonstrated bone loss. Prior authorization or approval is required but my MO's office had no issues getting it.
Nov 24, 2019 09:24PM Nancy2581 wrote:
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
Nov 25, 2019 03:36PM ctmbsikia wrote:
Six months ago my insurance company also denied Prolia. I already had diagnosis of OS and it said that it wasn't an approved treatment. I guess they wait for you to fracture? My BC diagnosis was clearly noted on the paper as well, so I really don't know how they get it thru. Despite regular exercise I can feel a difference in my spine. If I sit too long, or over do it. Do I hope this med lends some relief? If I actually get it?
Nov 25, 2019 07:48PM muska wrote:
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.
Nov 26, 2019 09:19AM ctmbsikia wrote:
Thanks muska. I'm a little nervous about it, but I'll know soon enough if bones are worse and if my insurer will cover it this time. Scan is on the 9-Dec and see the MO again on the 16th.
Dec 4, 2019 05:48PM edj3 wrote:
My insurer did cover Prolia last year, had my first injection in September.
Guess what? In 2020, it's not on the formulary. So I must either have my endocrinologist appeal that, or pay out of pocket or find another drug.
Dec 4, 2019 07:32PM MinusTwo wrote:
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.
Dec 6, 2019 08:59AM edwards750 wrote:
I just got my test results from my bone density test. Good news. I’ve gone from osteoporosis to the range of osteopenia. Yea! I take Boniva once a month and take calcium and Vit D daily. I don’t do any weight bearing exercises but I am very active. My friend says I’m the energizer bunny! Haha
My internist suggested the Prolia shots but I didn’t want to financially or otherwise. I heard the shots are $1200 a pop. I also worried about some of the side effects. I do have a friend who has them and has no issues. She has osteopenia.
Dec 6, 2019 01:25PM muska wrote:
I self inject Prolia, and it is covered under my pharmacy coverage. It comes in self- injectable syringe. Saves time and money.
Dec 6, 2019 02:07PM edwards750 wrote:
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.
Dec 13, 2019 03:47PM ctmbsikia wrote:
DXA scores are back. I also have a cold and am really worried about taking my 1st Prolia shot on Monday if I still don't feel well by then?
Maybe I can wait a bit longer?
Any advice welcomed. Have a great weekend all
AP spine L1-L4 BMD: 0.910 g/cm2 T-score: -1.2, Low bone density
Total proximal femur BMD: 0.675 g/cm2 T-score: -2.2, Low bone density
Femoral neck BMD: 0.550 g/cm2 T-score: -2.7, Osteoporosis
Only changes that are statistically significant at 95% confidence level are reported below. The least significant change at this facility is 0.0223 g/cm2 in the lumbar spine and 0.0266 g/cm2 in the hip.
For assessment of rate of change, the lumbar spine is the preferred site followed by total proximal femur.
In the spine, there has been no statistically significant change in bone mineral density since the prior study.
In the total proximal femur, there has been significant decrease of 0.041 g/cm2 or 5.7 % in bone mineral density since the prior study.
FRAX data is not calculated as some T-scores are at or below -2.5.
Dec 13, 2019 04:33PM edj3 wrote:
My MO referred me to an endocrinologist because I fractured my pelvis from running. (I didn't fall, just from running . . . ok a lot)
I've only had one injection (in September) and that was at my endocrinologist's office.My MO's PA said maybe Reclast would be an option--I know b/c of the pelvic fracture, I did not pass go, I did not get $200 or a script for any of the oral meds. All my MDs know I won't stop running so the goal is to get my bones in good shape.
I'm a fan of that.