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Topic: 40 and diagnosed with 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: Sep 2, 2011 07:29AM

LtotheK wrote:

Ladies,

I am super-depressed this morning.  I await a call from my oncologist, but when she's calling me on the cell, we know it's bad.  She says my bone scan shows osteoporosis and osteopenia.

Looking for advice about how to move forward.

Background:  40, 4 rounds TC for IDC Stage 1, healthy, fit (5' 8" and 130) and active (as in, can't really up the ante too much at the gym).  Vegetarian.

Vices:  sugar, coffee, alcohol.  Wondering what real impact removing these would have.

Thanks....

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Sep 2, 2011 07:43AM ICanDoThis wrote:

Well, there is some indication that switching to an alkaline diet may help, but the biggy is likely to be getting your blood calcium, Vitamin D, magnesium, and assorted trace elements into line.

Your onc may suggest a visit to an endocrinologist. That's who treated mine. They may want to look into your parathyroid (NOT thyroid, parathyroid) levels. Mine were high, my Vitamin D was super low, calcium was high, etc.

Went onto 50,000 ius of Vitamin D3 weekly, and blood levels started to go up. My osteoporosis (which was just over the line) went back to  osteopenia.

Other things that may be going on - are you on any other meds - I take an inhaler that includes a steroid for asthma, and that can kick your bones to the curb. Heartburn medicine can cause calcium to not be absorbed.

My endocrinologist recommended a tanning bed. Honest. We went to Hawaii, and my vitamin D levels rose 10 points in a week. As a result, I am now getting 10-15 minutes of sun daily, and feel pretty good.

Doctors will likely recommend Fosamax - or the generic, or Boniva. I'm not nuts about it, but I am taking Boniva.

But, what helped me the most psychologically, was finding out that I have only a 5% chance of having a fracture, despite a messy Dexa scan. Ask about your FRAX score - this is a scale that the World Health Organization came out with that combines DEXA with a wide range of other considerations - sort of like Adjuvent OnlineSmile

There is a lot going on in this area. At your young age, I would definitely be looking for a specialist.

Hope this helps.

Sue - Proud to be Krista's Mom Dx 12/28/2007, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH)
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Sep 2, 2011 07:48AM LtotheK wrote:

Wow, I just can't thank you enough, ICanDoThis!  Wonderful information for endocrinologist and the FRAX scoring.

I am on Tamoxifen. I am unsure if I'm in menopause, this pends further tests in October. (In pre-menopausal women, it can attack bone much like AIs.)

I pushed for a bone scan, given my family history.  My grandmother, for all intents and purposes, died of osteo.

Interestingly enough, I saw my TSH scores recently.  While my doctor didn't flag them, one was low, which in fact indicates slight hyperthyroidism.  So, the endocrinologist is a great idea.

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Sep 2, 2011 05:48PM cycle-path wrote:

Good advice from ICanDoThis. 

I was diagnosed with osteoporosis when I was, I think, about 50. There's a lot you can do about it other than what you're doing. 

It's been a while since I was first diagnosed so I don't remember all the tests, but there's a urine test that the endocrinogist will want. It tells whether the excess calcium is being excreted in the kidneys. I think they also do thyroid/parathyroid function tests for a similar reason, but as I say I don't remember exactly.

You really need to go to an endocrinologist -- I love the guy I go to, who's very interesting and smart and has lots of ideas. Get thee to the endocrinologist right away!

I've been on Fosamax, which ruined my esophagus, and introvenous Boniva and Reclast. The latter two have helped and my spine is now osteopenic rather than osteoporotic.

In spite of being osteoporotic for a number of years, during which I've taken many very hard falls (I have an extremely large and rambunctious dog), I've never broken a bone. I had one mother@# of a sprain once and several enormous gashes, but no broken bones. So it's not as though your bones are mush in spite of what the doctors may tell you. 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Sep 2, 2011 06:15PM - edited Sep 2, 2011 06:17PM by LtotheK

Thank you, everyone!

Update:  this is going to be a weird ride.  My hip measurement was -3, which is just plain insane for a woman my age.  The doctor called the endocrinologist, and I have an appointment September 12 for a full workup.  He said he wants the Z scores, and "isn't impressed with T scores".  

I will keep everyone posted.  It is just a big fat shock, I felt like I already did my tour of duty on these health issues last year...I'm a bit depressed and angry.  For the first time, I really feel like my body is letting me down big time. 

By the way, the thing that really bothers me is not having to take the meds, it's that so much speculation seems to indicate the biophosphanates don't reduce fracture risk, and they may build the wrong kind of bone... 

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Sep 2, 2011 06:28PM - edited Sep 2, 2011 06:43PM by LouLou40

Don't be depressed about it, I was dx with osteoporosis at 40 also. I'm very fit and healthy and just figure it's a result of chemo induced menopause and being a small frame.

I hate taking meds but discussed the bisphosphoates with my Onc at length and decided the benefit out weighed the slight risk of long term SE's, he thinks 2 yrs of Zometa will be adequate.

So, I am on zometa every 6 months x 4 infusion, take vitd and calcium supplements, I also saw a PT who specialised in osteoporosis and just incorporated the resistance training into my normal gym routine, she did a research trial on it for her Phd and found it only takes 30min of resistance training x 4 a week to see an increase in BMD.I Will have another dexa scan in Nov and i'm hoping for a big improvement in my T and Z scores, my initially T score of right hip was -2.8, spine was slightly better, can't remember the Z score but in the bottom 2% for someone my age and race etc. 

It's a reverse-able condition, so I figure it's great to know about it at a young age, do something about, I recon knowledge is power.

Lou 

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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Sep 2, 2011 09:28PM LtotheK wrote:

LouLou, you are a rock star, I thank you so much.  You basically gave me my weekend feeling so much better about this!

Thank you all so much.

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Sep 11, 2011 11:44PM Jorf wrote:

Please wait to see someone who knows what they're talking about before getting too worried. (Anyone who tells you that you have both osteoporosis and osteopenia is not knowledgable enough about bone health to listen too carefully to.) Glad you're seeing an endo.

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Sep 11, 2011 11:54PM crazy4carrots wrote:

Actually, I believe it's possible to have osteoporosis in a specific area such as the hip, and osteopenia in other areas.   My niece was dx'd with an osteoporotic right hip at age 42.  Her other hip was deemed osteopenic. (She had gone into very early menopause)

The demagogue preaches doctrine he knows to be untrue to men he knows to be idiots. Dx 1/10/2008, ILC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR-, HER2-
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Sep 12, 2011 08:38AM LtotheK wrote:

Linda, how interesting!  I see my endocrinologist today, so that is a bit more encouraging.  My other areas tested osteopenic.  And, yes, it looks like I'm in menopause at 40, which is the biggest bummer of all time.  Next to bc....

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Sep 12, 2011 07:32PM - edited Sep 12, 2011 07:32PM by LtotheK

My endocrinologist did a thorough intake, including blood and urine work for thyroid, parathyroid, and a slew of other things.  His take:  chemo + menopause before my peak bone building years (which he says go through the 30s) is likely the culprit.

He wants me to take a drug called Prolia, which currently has the bejeezus scared out of me.  One step at a time.  I do, however, sometimes understand why the holistic/naturopathic folk jump off this train entirely.  It does feel sometimes like a vicious cycle:  take this drug, get that, take this for that.

Lindausa,would you mind telling me what they did for your niece?  Did she go on biophosphonates?

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Sep 12, 2011 07:35PM LtotheK wrote:

Hey cycle-path, you and I are birds of a feather.  It was my spine, as it turns out, that tested osteoporotic.  My other measurements were osteopenic.

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Sep 12, 2011 07:52PM crazy4carrots wrote:

L -- My niece is the very definition of the "non-compliant patient"!  She was Rx'd fosamax, took it for about 6 months, and gave it up.  She has been fine for the last 15 years!
I know I've written about this before, but maybe it bears repeating:  Her mother was dx'd as osteopenic about 3-4 years ago and faithfully took her fosamax.  Her dexa scan showed nothing wrong in December.  While wintering in Mexico, in late March she experienced pain in her femur in the morning, went out for lunch, stepped off a curb afterwards and fractured her femur in 4 places.  The surgeon told my BIL that her femur was very osteoporotic (what????!).  She had surgery and when she returned to Toronto, her orthopod told her never to touch bisphosphonates again, as he had seen too many cases like hers.  Now that's scary stuff!   My PCP had me on Fosavance for the past year, due to slight osteopenia.  I stopped taking it in April and had a dexa last week.  I see my onc for the results on Thursday and am ready for a battle, because she is the one who said - because of Femara - I should be taking a bisphosphonate.  Anyhow, I've been taking 3-4000 IUs of Vitamin D3, calcium citrate with magnesium and other minerals, and drink milk, eat yogurt and prunes.  I am SO sceptical of the whole issue of osteopenia.  And there is no osteoporosis in my family history. 
The demagogue preaches doctrine he knows to be untrue to men he knows to be idiots. Dx 1/10/2008, ILC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR-, HER2-
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Sep 12, 2011 09:32PM LtotheK wrote:

Ugh, Linda, that is whack (I'm glad you are sharing).  Let me get this straight:  did her doctor suggest it was the bios that caused her fractures?? 

I think one thing is clear from the latest research:  osteopenia is reversible in a lot of cases with natural interventions.  I must admit, even though I'm a philosophical down the middle type of gal, it weirded me out to see the drug rep in my endocrinologist's office.  I felt like, well, there goes the drug he'll be administering to me next week...

Hey, it's tough business trying to get mileage out of these bodies, I keep remembering that 100 years ago, I'd likely be dead in a gutter.  Messing around with the body's delicate systems is no cakewalk.  My doctor asked me to look at Prolia's site. Not sure why, the SE warnings are enough to get the mellowest of persons in a lather (heart infections; high cholesterol; jaw necrosis; atypical fracture; impeding the body's natural ability to make bone...)

I know I shouldn't seek medical advice, I'm not.  But I'm curious what others might do in my situation.

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Sep 12, 2011 09:48PM crazy4carrots wrote:

L -- The orthopedic surgeon in Toronto only said that he had encountered cases similar to hers and advised her not to take any more biophosphanates.

I'm really concerned about the information provided by dexa scans.  What are they actually reading?  In my SIL's case, the dexa showed no signs of osteoporosis, and yet her femur told a much different story.

Certain drugs tend to remind me of that great law of physics:  For every action, there is an equal and opposite reaction. 

The demagogue preaches doctrine he knows to be untrue to men he knows to be idiots. Dx 1/10/2008, ILC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR-, HER2-
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Sep 12, 2011 09:58PM cycle-path wrote:

LtotheK, if I remember correctly (and the odds are not particularly high), I am osteopenic in my spine and osteoporotic in one or both hips. I think (but I don't really remember) that my first DEXA said I was -penic but almost -porotic in both spine and hip, and then I went to obvious -porosis in both. Now I'm just -porotic in my hip(s) and -penic in spine.

I think tomorrow I may call my doctor's office and get my DEXA history. Sheesh, the swiss cheese holes in my memory have got to be worse than the gaps in my bones! 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Sep 12, 2011 10:00PM LtotheK wrote:

Linda--I've made that EXACT quote here, too!  I believe that is the case in many arenas in our treatments.  Anyway, I'll keep everyone informed. Never thought Reclast would look like the easy way out...until I started reading more on Prolia.  This is harsh stuff, no two ways about it.

Interesting you are questioning the DEXAs.  Very interesting indeed, hadn't thought of that.

Well, I'm talking to a friend and survivor, and we've decided a second opinion is warranted.

I'll probably end up where I always do:  question like crazy, and go ahead with the meds because there is no perfect answer.  But, I felt today more than ever that sometimes getting into all these treatments is the merry go round that never stops.

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Sep 13, 2011 08:00AM Heidihill wrote:

Since I had bone mets I was getting Zometa infusions regularly for 2 1/2 years. A year after I stopped taking it I had a DEXA scan which showed above average results. Zometa does improve bone density on DEXA scans but that does not necessarily mean the bones are stronger. I figured given the above average results I still had room for error if my bones were weaker than they seemed. I lift weights daily to maintain my bone strength.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 13, 2011 08:49AM LtotheK wrote:

Bone building, from what I learned yesterday, is quite complicated. Apparently, they are not quite sure how the bone rebuilds on these drugs.  Ideally, bone acts like struts, providing strength on a diagonal line against the outer layer.  Whether these drugs do that is in question.  It points to the possibility they build brittle bone.  I've said here "wrong kind of bone", and cycle-path has very astutely corrected me.  But the fact is, it may not be bone integrity that actually protects against certain types of fractures.  I think it's imperative every woman ask what her FRAX risk of fracture is and weigh it against the chance of atypical fracture.

My endo did say the jaw necrosis stuff is very overstated.  It's about 3 - 5 cases per million.  Every dentist and doctor I've spoken with says they've never seen it.

My other issue for the pre-meno set:  when is someone going to test my fsh?? My endocrinologist yesterday said the same thing:  "Tamox is good for bone."  Clearly, he and my oncologist are less versed in younger women.  

What a drag....anyway, Heidi, can you tell me a little more about lifting weights?  I have an all-body workout I do every 48 hours, perhaps I should change it up to weight lift every day.  I hear it takes 4x/week @ 30 minutes to get bone results. Oh, I also ordered a rebounder!

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Sep 13, 2011 08:53AM LtotheK wrote:

By the way, cycle-path, you always give me a chuckle (odds are not particularly high--welcome to my world).

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Sep 13, 2011 05:12PM cycle-path wrote:

LtotheK, glad to be of service Cool

I've done a fair amount of research and talking to medical professionals about the jaw necrosis thing. The consensus is 1) it's rare; 2) it tends to happen to people on bisphosphonates who have had to have teeth pulled, which is why they tell you to take care of your teeth while you're on the drugs; and 3) there's reason to believe the people who did get osteonecrosis of the jaw were primarily or exclusively later-stage cancer patients, whose systems were pretty screwed up by various cancer treatments. I'm therefore not at all concerned about jaw issues for myself or most of the women I run across.

Let's talk about the issue of bone quality on bisphosphonates. I often like to give the warning that my medical training is limited to putting on Bandaids, but here's what I think. There's a natural cycle to things. Plants, for example, are known to have a particular life expectancy. Trees (other than some like Giant Sequoia) get to a certain age and then they die. If you try to artificially get them to live longer they become wacky. 

I think there may be something similar going on with the osteoclasts that naturally break down bone -- they "know" it's the end of the life cycle for that bit of bone so they take it away. And the Bisphosphonates interfere with that process. So maybe it's not that they build the wrong kind of bone, but that the bone they're kept from destroying is inferior bone. Anyway, it's something to think about.

I agree that you should probably have a FSH test. I wonder, though, what's the mechanism that causes cancer treatments to put one into early menopause? What aspect of "being in/past menopause" means that Tamox will be good for the bones instead of bad? Although the FSH test is the gold standard for determining whether you're in/past menopause, I'm not 100% certain that a high FSH level is what will tell how Tamox should affect your bones.

Yanno what I mean?

Hah! Now you have more things to research. That should keep you off the streets for a few days.  

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Sep 14, 2011 08:01AM Heidihill wrote:

Whole body workout sounds good, too! I assume you mean using your own body weight. I have some of those exercises in my routine but in addition use dumbbells, medicine balls, swiss balls, static weights machines, cable machines, kinesis machines.

Here are some exercises you can do with dumbbells.

http://www.brianmac.co.uk/exercise.htm

I also started stretching more than a year ago. I never really liked stretching but a personal trainer got me started doing it. I think this and exercise have really helped me. The link below talks about how bone marrow stem cells can turn into bone, muscle or cartilage with exercise as opposed to turning to fat when doing nothing. I think newer research has confirmed this.

http://www.seas.upenn.edu/~chenlab/newsreleases/NatureSU%20Stem.pdf

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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