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Topic: Dexa shows osteopenia, again, sigh.

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: May 14, 2021 11:59PM

claireinaz wrote:

Hi all,

Just finished my six month checkup with MO (all was well, but...) Dexa scan shows osteopenia in hip and spine again. I've been on Tamoxifen (1 year) then an AI for 8. I'm back to getting Prolia injection every six months, which seemed to work the last time I did them with no side effects. But I'm heading into windup of taking any AI, looks like next April.

I'm reaching out to others who regained bone after stopping an AI. Wondered what your experience was like, and how long it took before you did reverse bone loss after you were done with whatever AI you were taking.

I don't need advice on what to do or take to protect my bones, since I've been doing it for years already (yoga, weights, walking/hiking, mag, calcium, Vit K2, vit D, I never smoked, rarely drink and then it's 1 or 2 and no more, etc. etc.).

I'm hoping that when I finish exemestane I'll get some bone back and won't have to continue with Prolia, at any rate.

Claire in AZ


9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 23, 2021 05:24PM windingshores wrote:

I would not worry a lot about having osteopenia. I have had osteoporosis for 14 years and did 5 years of Femara with no fractures. I am surprised you are on Prolia, with osteopenia. You can only take it for 5 years total and once you stop your bones go back to baseline, and then you need something else. Some doctors are prescribing really early . Tamoxifen would not affect your bones of course.. In my experience an AI drops your bone density the first year and then the density stabilizes. it seems the Prolia was prescribed for you due to the AI as a preventative, but osteopenia is not that worrisome yet in my view.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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May 24, 2021 04:41PM edwards750 wrote:

My MO started me on Arimidex which was a big mistake. I already had osteopenia and Arimidex attacks the bones. She did switch me to Tamoxifen but the damage was already done. I had osteoporosis which I gotta tell you was extremely painful. My internist prescribed Boniva which I take once a month. It has helped considerably. My last scan showed my numbers were in the osteopenia range.

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May 24, 2021 08:40PM claireinaz wrote:

Hi Edwards750/Winding shores, thank you. I only got 3 or 4 Prolia shots total. The Dexa scan 3 years ago showed no osteopenia after those 3-4 injections, so no more Prolia because insurance wouldn't cover it--there was no justification for it. I suspect that if next Dexa shows no improvement after a few injections of Prolia, I might look into Boniva after researching, of course.

Since I'm 62, but super active and do a lot of weightbearing exercise, I might suspect this is somewhat age related but also because I've been on Arimidex, then Aromasin for nearly 9 years and Tamoxifen before that.

I have either Zometa or Prolia scheduled for Wed.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 24, 2021 09:19PM AliceBastable wrote:

Just as an FYI, Dexa scans can have errors. The first one I had in 2018 showed osteopenia and osteoporosis. I always wondered about that reading because the scan felt rushed and I didn't think I'd gotten my body completely positioned. I had another scan last year and told the technician that I wanted time to get positioned correctly, and explained what had happened at the previous one. This one showed such vast improvement (very mild osteopenia) that my primary doc was freaking out and was ready to submit me to a medical journal until I clued her in. So if your hip or spine is even a little off where it needs to be for the scan, it can cause errors.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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May 24, 2021 09:29PM edj3 wrote:

And I'll chime in and say that the values also don't tell the whole story, at least not always. In my case, those numbers indicate osteopenia, and not very bad at that.

However--I've fractured my pelvis while running, and then two years later my foot. The pelvic fracture is what got me the osteoporosis dx, not my DEXA scan.

(and yes, I've lifted weights, eaten correctly my entire life--sometimes you just get a shit hand for your DNA)

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 25, 2021 04:07AM MinusTwo wrote:

Note - the data about Prolia only being good for 5 years is outdated. The numbers are stretching out to 10 years now. More details available this summer.

Some of this depends on your age. If at age 77 & living alone. I have a hip or spine fracture with osteopenia, I'll be warehoused w/o much hope of living on my own again. So I see an endochrinologist and continue to take my Prolia shots.

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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May 25, 2021 04:51AM hapa wrote:

I'm also surprised you're on prolia for osteopenia. I had full blown osteoporosis at my first DEXA scan and haven't had any treatment. My fracture risk was pretty low. BMD is correlated to weight and your age, and your T score is based on where your BMD lands on the distribution of BMDs of white women aged 20-29. Here's an interesting article I read about osteopenia a while back about how cutoffs were determined:

How A Bone Disease Grew To Fit The Prescription

You can calculate your risk of hip fracture or major osteoporatic fracture here:

https://www.sheffield.ac.uk/FRAX/tool.aspx?country=9

Even with full blown osteoporosis, my risk of fracture was very low. My BMD was low because I'm thin. There is a blurb on that page that tells you what fracture risk warrants treatment, I was nowhere close.

Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 10/22/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 12/21/2018 Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Nerlynx
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May 25, 2021 09:22PM - edited May 25, 2021 09:24PM by MarciaM

Hello ladies;

Well, I've got results yesterday on my last dexa scan, i had stage 4 BC, and took steroids for a brain tumor ten years ago. I've been on a variety of bone loss meds and do an excellent diet of kale nearly every day. In 2019 when I got my dexa scans I saw that the osteoporosis had worsened even though i went off the Arimidex. So at that point, I ask my dr. for an RX for Evista. I had a terrible time with tamoxifen which had been prescribed ten years ago for BC, but I really didn't have that much trouble with Evista, which is prescribed for breast cancer as well. I tried it but it too failed. I'm not sure s I do exercise with yoga walks daily. I'm discouraged as it showed worsening symptoms and both parents were compromised by broken hips and had to be in nursing homes in their 70's. I did view a wonderful discussion of Dr. Mark Hyman , MD, functional medicine dr, discussing osteoporosis on youtube. he recommends a proper diet and no milk, instead, kale Vit D less calcium! I am going back to the drawing board will try to exercise more! I'm not taking prolia as I have autoimmune disease of all kinds and it's not safe.

I wish there was something else I cud do but I'm doing all I can. I'm remaining free of disease with regard to BC, that is a lot to be thankful for. Shrugg ! I wish you all good luck in addressing your osteoporosis!

Marcia



Marcia M Hormonal Therapy 5/20/2010 Arimidex (anastrozole) Dx 10/26/2010, IDC, 4cm, Stage IIIA, Grade 3, 7/14 nodes, ER+/PR- Dx 10/27/2010, IDC, 5cm, Stage IV, Grade 3, ER+/PR-, HER2- Surgery 11/4/2010 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy 1/3/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 5/15/2011 Breast, Lymph nodes
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May 26, 2021 05:52PM - edited May 26, 2021 05:55PM by claireinaz

Hi all,

Thanks for this conversation. I really do wonder if simply stopping the Exemestane will help, to my original query. I have about 9 more months of it, then I'm done. I'm not really ON Prolia; I had three injections, I think, and then because it reversed my osteopenia completely per a dexa scan, insurance wouldn't cover it anymore. So I haven't had any further injections for three years.

If anyone has any experience with their bone density improving when they stopped AI, I would really like to hear from them as I need some hope, not negative experiences, although I understand how disappointing it must be to wind up with bone problems on top of *(&( BC. I get it.

Thank you, Alice, for that voice of reason.

My grandmother had osteoporosis, broke her hip, had a terrible replacement, and I think that led to her demise, though she lived to be 99. My mother had it as well, with dowager's hump beginning in her 80s. I am much, much more active than they ever were. I eat better than they did. I am trying not to wind up like them, and navigate recurrence risk too, which is something they didn't have to do.

I have also heard that about less calcium, hapa. I read that since our typical western diet is high in protein, usually animal protein, that protein like that actually leaches calcium from our bones. I eat yogurt, very little cheese--it's like a garnish, but lots of fruits and veggies daily. LOTS of it :), and no animal protein other than fish. I've been eating like that for years, since before my dx but certainly afterward. It's supposed to reduce recurrence risk.

It's maddening, trying to protect every part of us and avoid recurrence at the same time.

C

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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