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Topic: feeling defeated with severe osteoporosis

Forum: Bone Health and Bone Loss — Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Nov 21, 2019 06:11PM

kmb4 wrote:

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

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Nov 21, 2019 08:41PM Meow13 wrote:

What about tamoxifen?

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Nov 21, 2019 11:51PM 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.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2019 04:02AM kmb4 wrote:

I was wondering that also. It's something I will discuss in January with her.

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Nov 22, 2019 04:11AM kmb4 wrote:

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.

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Nov 22, 2019 04:23AM 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

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Nov 22, 2019 05:17AM 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.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Nov 22, 2019 07:27AM 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.

Best.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Nov 22, 2019 07:35AM ctmbsikia wrote:

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

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Nov 22, 2019 08:11AM 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!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Nov 22, 2019 08:20AM 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

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Nov 22, 2019 10:38AM kmb4 wrote:

DorothyB- Evenity is not for breast cancer but for my Osteoporosis. So no it's not a hormone blocker

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Nov 22, 2019 11:46AM 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.

Nancy

2.8 cm tumor with LVI Dx 6/11/2014, IDC, Right, 2cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/24/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/22/2014 AC + T (Taxol) Hormonal Therapy 1/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/29/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/17/2017 Femara (letrozole)
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Nov 22, 2019 01:47PM 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.


Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Nov 23, 2019 02:25AM kmb4 wrote:

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

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Nov 23, 2019 10:33AM 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.

Nancy

2.8 cm tumor with LVI Dx 6/11/2014, IDC, Right, 2cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/24/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/22/2014 AC + T (Taxol) Hormonal Therapy 1/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/29/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/17/2017 Femara (letrozole)
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Nov 23, 2019 04:07PM 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.

Diane

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Nov 24, 2019 02:42PM 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.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Nov 24, 2019 03:24PM 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

Nancy

2.8 cm tumor with LVI Dx 6/11/2014, IDC, Right, 2cm, Stage IIB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 6/24/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/22/2014 AC + T (Taxol) Hormonal Therapy 1/28/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 1/29/2015 Whole-breast: Breast, Lymph nodes Hormonal Therapy 12/17/2017 Femara (letrozole)
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Nov 25, 2019 09:36AM 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?

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Nov 25, 2019 01:48PM 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.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Nov 26, 2019 03:19AM 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.

Dx 12/14/2017, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 1/16/2018, LCIS, Right Surgery 1/31/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/11/2018 Whole-breast: Breast Hormonal Therapy 6/25/2018 Arimidex (anastrozole)
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Dec 4, 2019 10:53AM edwards750 wrote:

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

Diane

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Dec 4, 2019 11:48AM 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.

Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Surgery 5/6/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 6/3/2019 Whole-breast: Breast Hormonal Therapy 9/23/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 4, 2019 01:32PM 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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 6, 2019 02:59AM 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.

Diane

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Dec 6, 2019 03:15AM DorothyB wrote:

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.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Dec 6, 2019 07:25AM muska wrote:

I self inject Prolia, and it is covered under my pharmacy coverage. It comes in self- injectable syringe. Saves time and money.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Dec 6, 2019 08:07AM 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.

Diane

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