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Topic: 41 with pre-treatment bone loss

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

Posted on: Feb 2, 2019 09:58AM

OTMom wrote:

My MO ordered a baseline dexa before starting me on ovarian suppression and AI. I got the results in my patient portal and they're not good.

L-Spine: T-score -2.5, Z-score -2.2

Left Femoral Neck: T-score -2.2, Z-score -1.9

Left Hip: T-score -2.0, Z-score -1.8

My next appointment with my MO is 2/11, so I know we'll talk details then, but I'm wondering what other people's experiences have been when starting out with low bone density. The plan had been to do OS+AI because I also have endometriosis and this would be a way to target both. I assume she'll tell me I have to do tamoxifen, which means we just don't treat then endo. Not really thrilled about that since I spent the last year+ trying to figure out the source of pain/GI issues I was having and now that I know what is causing it, all options for treating it are off the table.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/13/2019 Whole-breast: Breast Hormonal Therapy 3/3/2019 Arimidex (anastrozole)
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Feb 2, 2019 10:14AM JaBoo wrote:

Hi, I am sorry I don't have a solution, just a very similar problem.

I did chemo with ovarian suppression as I am high risk for recurrence, grade 3, very high Ki67. Before starting the AI, my MO sent me for a baseline DEXA scan with no worries whatsoever, because I am very active and eat healthy.

Well, the T-score in my spine showed -2,6 = osteoporosis - bummer!! At 38! But both femoral necks are in the green zone, not even osteopenia.

My bone turnover is fine (from blood + urine). Blood showed low vit. D.

I received vit D3 in two various forms and vit. K2. I was told to get enough calcium in my diet and be very cautious of calcium supplements.

My MO proceeded with starting me on an AI on top of the ovarian supression. This should be more effective to keep my high risk cancer away. I don't really know what happens to my bones!

dx at 38 Dx 5/22/2018, IDC, Left, 2cm, Grade 3, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/14/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 6/19/2018 Lumpectomy: Left Hormonal Therapy 7/16/2018 Zoladex (goserelin) Chemotherapy 7/16/2018 AC + T (Taxol) Targeted Therapy 9/13/2018 Herceptin (trastuzumab) Hormonal Therapy 1/11/2019 Aromasin (exemestane) Surgery 1/21/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 3, 2019 11:46AM OTMom wrote:

Sorry you're dealing with this too. I have no idea what they'll do with me since OS+AI aren't specifically indicated for the cancer. It's just the only way to treat that plus the endo. So frustrating.

They didn't put you on calcium or bone building supplements of any kind? Just dietary calcium? That's interesting. I would imagine they would be more aggressive but obviously this is all new to me so I have no idea how it all works.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/13/2019 Whole-breast: Breast Hormonal Therapy 3/3/2019 Arimidex (anastrozole)
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Feb 3, 2019 02:11PM edwards750 wrote:

I have osteoporosis so I’m surprised they didn’t prescribe something like Bonita which is what I take monthly. I have heard taking too many calcium supplements is not a good thing. You can get calcium from food obviously do that helps too.

Osteoporosis is painful. There were a couple of times the pain was unbearable. I have it in my right hip. I took Arimidex the first year I was DX which attacks the bones. I reminded my MO of my condition and she switched me to Tamoxifen. It was after 1 year on the drug so no telling what additional damage I did to my bones. Thanks doc.

I bought a donut pillow to sit on and it helps. I even went to a chiropractor but he thought the severe pain I was having was caused by my sciatic nerve. My internist said it was the osteoporosis but at least I didn’t have any fractures.

It’s much better now but it flares up every now and then.

Diane

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Feb 4, 2019 05:01AM JaBoo wrote:

OTmum, the bone doctor didn't want to put me on any bisphosphonates, he said my system had enough to deal with in the last year.

The more I look at these bone drugs the more cautious I am and I am very glad he didn't think it necessary for me. I am very young, I would have to be on bisphosphpnates for a very long time - and when they are discontinued the bone loss is even quicker. Or they can cause femoral fractures, oh my. The next step would be Prolia (denosumab) and the like, but these are even harder to discontinue.

So I am now waiting and seeing - I am sheduled for a scan to see if the vaitamins have any effect. I plan to start with rigorous weight bearing exercise with weighted vest to put more weight on my spine.

The other thing is, I am really petite, BMI 19-20 my whole life. I am thinking - how can they compare my bones to an average 30 years old female, that would be about 40-50 pounds heavier than me? I think it is obvious that my bones have to be lighter... they carry a lighter person... but this is just my reasoning. I don't know whether it's correct

dx at 38 Dx 5/22/2018, IDC, Left, 2cm, Grade 3, 1/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 6/14/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 6/19/2018 Lumpectomy: Left Hormonal Therapy 7/16/2018 Zoladex (goserelin) Chemotherapy 7/16/2018 AC + T (Taxol) Targeted Therapy 9/13/2018 Herceptin (trastuzumab) Hormonal Therapy 1/11/2019 Aromasin (exemestane) Surgery 1/21/2019 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 4, 2019 07:53AM OTMom wrote:

I didn't know that about discontinuing the bone building meds. Ugh. I'm also pretty small. I've heard that's a risk factor for osteoporosis- just didn't think I'd already have it at 41. I had a doctor tell me to stop taking calcium several years ago, so I did. Unfortunately I also don't tolerate dairy well, so I probably don't get enough calcium in my diet.

I have a lot of lower back pain and pain in my left hip, which is what they measured. I had read that osteoporosis is not painful, so I'm interested to hear you say that it is, Diane. Would be nice if rebuilding bone helped with the chronic pain.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/13/2019 Whole-breast: Breast Hormonal Therapy 3/3/2019 Arimidex (anastrozole)
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Feb 4, 2019 08:27AM leftduetostupidmods wrote:

I already had osteopenia before starting AIs. My Breast Surgeon recommended Vit D3 5,000 UI daily, 600 mg calcium twice a day with 3 hours delay between taking the vit D3 and the calcium, and to keep my vitD levels between 60 and 65. My osteopenia has improved. I had it both in spine and femural head, now it's only in the spine and much milder.

left this forum this time for good due to how stupid moderators are
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Feb 4, 2019 08:30AM leftduetostupidmods wrote:

OTMom, osteopenia is painful, and so is osteoporosis. This is a case of dr. having no idea what they're talking about, the same as "breast cancer isn't painful" .

left this forum this time for good due to how stupid moderators are
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Feb 4, 2019 11:40AM hapa wrote:

Eating prunes might help:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC54097...

You need to eat six a day. I'm not sure if I read that in that article or somewhere else. Apparently prunes are made from a different species of plum than the plums you get in the grocery store, which is too bad because those are much tastier. I try to do six prunes a day, but that is quite a few prunes for me, though I too am small so maybe four or five is enough? I figure it won't hurt and might help, and is cheaper and easier than anything a doctor would give me.

I also do trail running and hiking and I keep telling myself that I'll start weight lifting any day now!

Dx 12/14/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (FISH) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, 3/18 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) 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
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Feb 5, 2019 02:43AM - edited Feb 5, 2019 02:45AM by LouLou40

I had a similar dx and also had low BMD pre starting Arimidex after chemo, 40 when diagnosed -10;yrs ago.I went into menopause during chemo. Hips in osteoporosis range and spine osteopenia, small frame and low weight most of my life probably contributed to the low BMD. Onc really wanted to try Arimidex with vit D and calcium suppliements, after 1 yr my BMD fell 11% so ceased the AI, no other hormonal treatment recommended due to low BMD, my period returned at the 2yr post chemo mark alwhich helped with BMD also.

I Did Zometa x4 infusions over 2 yrs which really increased my BMD back into low normal range. 2yrly Dexa scans since have shown BMD decline despite doing crossfit 3-4 times a week for 4 yrs, and eating lots of calcium rich foods , vit D has always been ok.

BMD now back into the osteopenia range - just off osteoporosis in hips, spine a bit better but still ostopenia. Happy to be monitored at present but may consider densumab in the future as now back in menopause.


Surgery 2/10/2009 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Dx 2/11/2009, IDC, 2cm, Stage II, Grade 3, 2/10 nodes, ER+/PR+, HER2+ Chemotherapy 3/10/2009 AC + T (Taxol) Radiation Therapy Targeted Therapy Herceptin (trastuzumab)
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Feb 5, 2019 05:55AM Rah2464 wrote:

hapa thanks for the link to the study on prunes! I am struggling to find a calcium supplement I can tolerate along with my Tamoxifen, and that I can actually swallow. And most of those darn chewables have soy lecithin in them. I am trying to get 500 mg supplemental calcium a day along with 2000 iu D3. I would like to get to around 800 mg supplemental but that will be a challenge for me. I have osteopenia, and my BMI is very low, can't seem to put weight back on while taking Tamoxifen so managing my bone health is critical.

Seachain, thanks for the tip about spacing out the time between calcium supplement and vitamin D pill. Didn't know about that.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 5, 2019 08:44AM - edited Feb 5, 2019 05:44PM by DATNY

Jaboo, you are right, it's impractical to compare your bone density with that of an average person,since you are petit and slim.

My local doc found osteoporosis a few months after I finished my treatment. He wanted to put me immediately on Evista. I went for a second opinion in one of the places associated with Harvard medical school. The doc there made the comment that is not that straightforward to made a diagnosis of osteoporosis since I did not have a early DEXA to compare with. She said some people may never reach the average maximum bone density, to which Dexa results are normalized.

So she put me on high intensity resistance training, 30 min twice a werk ( one does this with a fitness instructor, or at physical therapy) and asked me to take 1200 of calcium suplement (broken in two doses per day) and vitamin D until my blood work shows values are around 50. She recommended New Chapter brand for calcium supplement.

She said if within one year dexa does not show new bone loss, I will avoid medication. However, if I will still have bone loss despite this regimen, I will need to start meds.

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Feb 5, 2019 10:33AM Polly413 wrote:

Well this thread is so interesting. We are getting all kinds of conflicting advice from our doctors, etc. The insert with the letrozole I am taking advises the taking of calcium and D supplements. Mayo Clinic or some other respected cancer facility advises that if you are taking more than 500 mg of calcium that you split the dose to no more than 500 mg at a time -- i.e. since a common dose is 1000mg a day,, take it 500mg twice a day. That is what I have been doing. I do take a pill that has D with the calcium but from reading on here I am supposed to spilt that also. Yikes. Its complicated. I have a friend with osteoporosis (but not cancer) and she takes a calcium supplement on the advice of the doctor who is treating her for that. So I am amazed that some doctors advise against calcium supplements. I know that in general you have to guard against too much calcium but those of us on hormone therapy are depleting our calcium big time. I have full blood panels regularly at my MO's office and my calcium level is normal taking the supplement. Can anyone explain why we should avoid calcium supplements? Thanks. Polly

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Feb 5, 2019 02:31PM SpecialK wrote:

Here is a good comprehensive link from Mayo concerning calcium needs, sources, and dietary vs supplemental calcium. If you are taking Vitamin D supplements you should take them with food that contains fat to help them work better. Also below is a link about when and how to take mineral and vitamin supplements.

I was osteopenic prior to diagnosis of breast cancer. I fit the physical profile, petite Caucasian with low BMI, so I may have developed it anyway, but a total hyst/ooph at 45 had a definite impact. I had a number of DEXA scans after the hyst/ooph, and did try oral bisphosphonates for a bit, but a previous stomach repair surgery made taking them too difficult, and I remained stable anyway. Chemo and six months of Femara did cause marked bone loss - and I had a good pre-treatment baseline as I had a DEXA same day as mammo and US that preceded the breast cancer diagnosis. I started on Prolia in Feb of 2012 and had my last injection in March of 2018. I was an exceptional responder in that after 4 Prolia injections I had normal density. My MO discontinued the Prolia as he wanted a break, a check on density, then resumption if I needed it. I just had a DEXA, almost a year off Prolia, and I have lost zero density - still maintaining normal status.

https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/calcium-supplements/art-20047097

https://www.consumerlab.com/answers/which-vitamins-and-minerals-should-be-taken-together-or-separately/how-to-take-vitamins/

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Feb 5, 2019 03:43PM Polly413 wrote:

Thank you Special K for this information. Polly

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Feb 6, 2019 06:15AM Rah2464 wrote:

Yes, thank you very much SpecialK!

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 6, 2019 06:22AM Rah2464 wrote:

DATNY looked up the NewChapter brand of calcium. Looks wonderful except yup there it is - soy listed as a main ingredient. I am beginning to think soy is in everything manufactured to eat (almost). Oh well glad there are quite a few that can take them.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 6, 2019 10:33AM SpecialK wrote:

rah - check out Garden of Life, link below.

https://www.gardenoflife.com/content/product/vitamin-code-raw-calcium/

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Feb 7, 2019 06:04AM Rah2464 wrote:

SpecialK - wow! looks great! Thanks ever so much I will give it a try.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 7, 2019 06:29AM leftduetostupidmods wrote:

Oh yes, I forgot to mention the splitting of calcium. The body can only process 500 mg at a time, the rest gets excreted in urine, puts a strain on your kidneys and you might even make some kidney stones. Also, a lot of people don't metabolize calcium well because they lack enough magnesium and zinc, so supplementing those two also is a good idea.

My biggest problem with taking calcium is the size of the darn pills. They're so huge I choke on them. Fortunately I found a couple of years ago that Puritan's Pride has a gelcap version, it's called "Absorbable Calcium" and it's so much easier to take.

left this forum this time for good due to how stupid moderators are
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Feb 11, 2019 12:55PM OTMom wrote:

MO is going to go ahead with the suppression and AI. We'll add in calcium and zometa infusions and redo the dexa after some time and hope for the best. She's giving me a few weeks to recover from radiation and then we'll start lupron and arimidex. Yikes.

diagnosed at 41 Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 12/4/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/13/2019 Whole-breast: Breast Hormonal Therapy 3/3/2019 Arimidex (anastrozole)

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