Feb 2, 2019 10:14AM - edited Jul 9, 2019 02:43AM by JaBoo
Posted on: Feb 2, 2019 09:58AM
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.
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Feb 2, 2019 10:14AM - edited Jul 9, 2019 02:43AM by JaBoo
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.
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.
Feb 4, 2019 05:01AM - edited Jul 9, 2019 02:41AM by JaBoo
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.
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.
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" .
Feb 4, 2019 11:40AM hapa wrote:
Eating prunes might help:
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!
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.
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.
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.
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
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.
Feb 6, 2019 06:15AM Rah2464 wrote:
Yes, thank you very much SpecialK!
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.
Feb 6, 2019 10:33AM SpecialK wrote:
rah - check out Garden of Life, link below.
Feb 7, 2019 06:04AM Rah2464 wrote:
SpecialK - wow! looks great! Thanks ever so much I will give it a try.
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.
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.
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