Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: Mar 30, 2020 12:59AM
A little history...I already had osteopenia and osteoporosis long before my CA diagnosis. I was taking hormone replacement therapy which I came off of as soon as I received my diagnosis. I had been getting a little bit of bone health improvement on HRT. My endocrinologist requested Prolia from my insurance co twice, but they twice denied it. I am not a candidate for oral meds.
On April 6 I will begin 30 radiation treatments after which I will start taking endocrine therapy. Did you have bone density scans prior to starting endocrine treatment? I am actually due in April for my bi-annual DEXA scan but it hasn't been ordered yet.
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Mar 30, 2020 09:08AM Beaverntx wrote:
I was already on a regular schedule for DEXA scans as I have osteopenia (the reason I take Tamoxifen rather than an AI) so no special scan before starting. And the next one was due within the year -- so far, so good.
Mar 31, 2020 03:28PM striveforhealth wrote:
Hello Spookiesmom and Beaverntx. Thanks for your responses. I will also take Tamoxifen rather than an AI.
Apr 6, 2020 01:01PM striveforhealth wrote:
I am scheduled for a DEXA scan in May...provided we are able to go out for appointments by then....God willing.
Jul 12, 2020 09:19AM striveforhealth wrote:
I did start taking Tamoxifin which I'm told will be helpful for my bone health.
I finally received a copy of my bone density scan results from May and discussed them with my endocrinologist. My lumbar T-scores go from -1.7 to -3.2. The left femur from -1.8 to -3.1. ; right femur from -2.0 to -3.4.
Endo recommended an infusion of Reclast. Waiting to hear about an appointment for infusion. Has anyone else used Reclast infusions?
Jul 14, 2020 11:24PM - edited Jul 14, 2020 11:28PM by macb04
/Hi, I wanted to bring up Vitamin K2, which is used for treatment of Osteoporosis in Japan. It is very safe, with no upper limit of toxicity ever found.
Vitamin K2 works in concert, synergistically, with Vitamin D and Magnesium, to take Calcium out of soft tissues spaces ( like Coronary Arteries or the Aorta) and putting it into your bones where it belongs. Numerous studies have shown it lowers risks of Osteoporosis and Heart Disease.
And I hope you have all read the studies linking Calcium Supplements with Heart Attacks and Strokes. I have included one article here that said Calcium can be taken as a supplement, ONLY when taken with Vitamin K2 and Vitamin D3.
I will add that without sufficient Magnesium, you can not effectively chelate that Calcium out of soft tissues into bones.
from research organizationsLow magnesium levels make vitamin D ineffective Up to 50 percent of US population is magnesium deficient
Essential Nutrient Interactions: Does Low or Suboptimal Magnesium Status Interact with Vitamin D and/or Calcium Status?
Free PMC articleFull-text linksCiteAbstract
Although much is known about magnesium, its interactions with calcium and vitamin D are less well studied. Magnesium intake is low in populations who consume modern processed-food diets. Low magnesium intake is associated with chronic diseases of global concern [e.g., cardiovascular disease (CVD), type 2 diabetes, metabolic syndrome, and skeletal disorders], as is low vitamin D status. No simple, reliable biomarker for whole-body magnesium status is currently available, which makes clinical assessment and interpretation of human magnesium research difficult. Between 1977 and 2012, US calcium intakes increased at a rate 2-2.5 times that of magnesium intakes, resulting in a dietary calcium to magnesium intake ratio of >3.0. Calcium to magnesium ratios <1.7 and >2.8 can be detrimental, and optimal ratios may be ∼2.0. Background calcium to magnesium ratios can affect studies of either mineral alone. For example, US studies (background Ca:Mg >3.0) showed benefits of high dietary or supplemental magnesium for CVD, whereas similar Chinese studies (background Ca:Mg <1.7) showed increased risks of CVD. Oral vitamin D is widely recommended in US age-sex groups with low dietary magnesium. Magnesium is a cofactor for vitamin D biosynthesis, transport, and activation; and vitamin D and magnesium studies both showed associations with several of the same chronic diseases. Research on possible magnesium and vitamin D interactions in these human diseases is currently rare. Increasing calcium to magnesium intake ratios, coupled with calcium and vitamin D supplementation coincident with suboptimal magnesium intakes, may have unknown health implications. Interactions of low magnesium status with calcium and vitamin D, especially during supplementation, require further study.
==================================================================================Vitamin K₂ therapy for postmenopausal osteoporosis
Free PMC articleFull-text linksCiteAbstract
Vitamin K may play an important role in the prevention of fractures in postmenopausal women with osteoporosis. Menatetrenone is the brand name of a synthetic vitamin K2 that is chemically identical to menaquinone-4. The present review study aimed to clarify the effect of menatetrenone on the skeleton in postmenopausal women with osteoporosis, by reviewing the results of randomized controlled trials (RCTs) in the literature. RCTs that investigated the effect of menatetrenone on bone mineral density (BMD), measured by dual-energy X-ray absorptiometry and fracture incidence in postmenopausal women with osteoporosis, were identified by a PubMed search for literature published in English. Eight studies met the criteria for RCTs. Small RCTs showed that menatetrenone monotherapy decreased serum undercarboxylated osteocalcin (ucOC) concentrations, modestly increased lumbar spine BMD, and reduced the incidence of fractures (mainly vertebral fracture), and that combined alendronate and menatetrenone therapy enhanced the decrease in serum ucOC concentrations and further increased femoral neck BMD. This review of the literature revealed positive evidence for the effects of menatetrenone monotherapy on fracture incidence in postmenopausal women with osteoporosis. Further studies are required to clarify the efficacy of menatetrenone in combination with bisphosphonates against fractures in postmenopausal women with osteoporosis.
Jul 16, 2020 07:38AM windingshores wrote:
Striveforhealth, I would think with your scores that the doc would be putting you on Tymlos or Forteo, which make new bone. Reclast can actually make future treatment with Tymlos or Forteo less effective. People finish Tymlos or Forteo to increase density and follow up with Reclast or Prolia.
Jul 20, 2020 12:59PM striveforhealth wrote:
Thank you all for the responses. I am currently distracted by sudden onset of leg/knee pain and instability but I will do more reading here and elsewhere about treatment for osteoporosis.
Right now I am awaiting a call for an MRI appointment to check to see if there is an issue with my tendon or ligament. Ugh! Always something! Trying not to get down but I'm struggling and unsteady walking.
Jul 20, 2020 03:40PM MinusTwo wrote:
Strive - I discovered that Medicare would pay for a DEXA scan more frequently than every two years if there was reason to believe there had been a major change or trying to track the problem. And if you doc fought for it.
I brought my osteopenia back up to normal over several years, then chemo tanked it down to osteoporosis. This was discovered during my first regular DEXA after cancer treatment. In addition to all the good vitamins, the doc put me on Prolia shots twice a year. I was able to get another DEXA scan after only a year to see if this regime was working.
Jul 21, 2020 10:33AM striveforhealth wrote:
Thank you Minus Two. You have a good doc. Were Prolia injections successful for you? Medicare and Tricare for Life already denied Prolia for me...twice now. I'm not sure how hard my doc fought for it other than filling out the insurance company's paperwork to justify my need for it. Bean counter vs medical doctor....
Jul 21, 2020 11:56AM SpecialK wrote:
strive - insurance companies generally like to see you fail oral or infused bisphosphonates before approving Prolia, mainly due to cost. I read above that you are not a candidate for oral meds, but what about at least one infusion of Reclast? That would allow your doc to resubmit to insurance for coverage of Prolia because he/she could indicate that you had tried an infused med. I am also hoping that the inability to take oral meds was noted on the request for approval previously submitted. I too am unable to take oral meds due to a previous reflux repair surgery many years ago, and Prolia was approved for me by Tricare Prime, with no appeal necessary, it was immediately approved - so I am wondering if Medicare is the hold up here. Generally speaking, the supplemental will not cover in full what the primary has denied. I understand Medicare would be your primary, with Tricare as a supplement, but there are others on this site that have Prolia coverage on Medicare. I too had pre-existing osteopenia that was worsened by breast cancer treatment, and was on Prolia for 6 years. Prolia reversed my bone loss back to a normal measurement, with no discernible side effects. I have been off now for a bit, but my DEXA done after being off for about a year showed I had maintained density, and I am due for my next DEXA in January.
Jul 21, 2020 12:55PM edj3 wrote:
In my case, and because my pelvis fractured while running (no falling or anything), I moved right to Prolia. Unfortunately I had an allergic reaction to the second injection so now I'll move to Tymlos.
Jul 21, 2020 01:42PM striveforhealth wrote:
edj3 Spontaneous fracture....had you already been diagnosed with osteopenia or osteoporosis? That fracture must have been shocking. I hope that you do well with Tymlos. My endocrinologist was hoping that the Tamoxifen would help my bones but with this latest DEXA scan she feels I need the Prolia or Reclast.
SpecialK I too have had serious GI issues including gallbladder, chronic reflux and colitis so for the same reason as you I am not a candidate for oral meds. I had a Nissan Fundoplication procedure done twice! Hard recovery. UGH! About 1 1/2 years after the first surgery the repair slipped and really messed me up for a long time. My doc at the VA dismissed my complaints and symptoms of a Paraesophageal Hernia so it was undetected until I went outside the VA system for care. I went through almost of year of episodes of feeling like I was having a heart attack prior to getting properly diagnosed and having the surgery to repair this. Those were challenging and frightening times. I wouldn't want to go back there again.
My endocrinologist did say she was placing the order for a Reclast infusion a couple of weeks ago but I never heard back about an appointment and now I'm struggling with ligament and tendon issues so I've have some extra time to think this treatment through while also waiting for an MRI appt of my knee. I'm kind of feeling like it's always something with me. Geez! I see my husband getting frustrated too which doesn't help. I think this connective tissue issue is from the Tamoxifen but my MO office doesn't. All I know is it came on suddenly and that I did not injure myself. Trying to keep my chin up while I'm coping with all of this!
Thanks for the responses. I appreciate them.
Jul 21, 2020 02:42PM edj3 wrote:
striveforhealth I hadn't been diagnosed. I actually ran a half marathon and a 10k with it broken, I thought it was a groin strain. But that last 10K, I knew something was really wrong and by the end I couldn't walk. And now this year, even with the Prolia, I broke a bone in my foot training for a marathon (I most certainly did not overtrain, been working with a coach and actually listening). It's pretty discouraging to be honest.
Jul 21, 2020 02:57PM MinusTwo wrote:
strive - yes Prolia has brought my bones back up from osteoporosis to osteopenia. I've had 8 shots and will continue for a few more. Then on several lady's recommendations, I'll have one Reclast and let it sit for a year.
Jul 21, 2020 02:57PM striveforhealth wrote:
edj3 Discouraging to say the least....I'm so sorry. You're a very active and obviously athletic woman so these spontaneous fractures are problematic for your lifestyle. Congratulations for trying to keep active but I'll hope for no more fractures for you! Follow your coach's instructions.
I'm just trying to stand and walk like a normal person...lol. I don't ask for much!!! Ha, ha. My MRI has been scheduled for Thursday afternoon so I'm at least on my way to finding out what is causing the instability, pain and clicking in my right knee. In the meanwhile I'm trying to keep off it as much as possible.
Jul 21, 2020 03:16PM striveforhealth wrote:
MinusTwo I'm glad you've has good results with Prolia. Wish I could get it and also follow with Reclast if necessary later.
Jul 21, 2020 06:36PM SpecialK wrote:
strive - the Nissen fundoplication is the surgery I had as well. I aspirated an antibiotic prescribed for something unrelated and ulcerated my esophagus so badly I couldn’t eat any solid food for six weeks. That led to a workup that revealed the reflux and a severe hiatal hernia. I had the surgery but became quite ill with pneumonia while still hospitalized that was a result of contaminated surgical equipment. My only symptoms of reflux were numerous cases of aspiration pneumonia and chest pain - just like a heart attack! So crazy that you mentioned that! In my Nissen pre-op workup I had an esophageal ph probe, and I experienced spasms - that was the heart attack-likechest pain - I never had heartburn, ever. It is a miracle that my Nissen is still holding - my BIL is a gastroenterologist and said the average benefit is about two years. I did not want to endanger that success with oral meds, and I had no problem with Tricare coverage for Prolia.
Jul 23, 2020 08:54AM striveforhealth wrote:
Wow! You've been through it! So glad you're doing well now. I hope your Nissan holds so you don't have to go through that again. My surgeon (the second one) used Gortex to "shore up" the repair...his words. He said it should remain intact forever. Fingers crossed... and like you, I can't take the chance with the oral medication for osteoporosis.
My knee MRI is set for this afternoon with an ortho consult for next Thursday. Pain is worse by the day so I'm struggling to get by with each new day. Once I have this issue figured out and know if the Tamoxifen caused this I can go back to working with the endocrinologist on my osteoporosis treatment. She must have dropped the ball with the request for the Reclast infusion though because I never got the call to schedule the infusion.
Jul 23, 2020 09:30AM SpecialK wrote:
strive - it was a crazy experience for sure and I have been fortunate that my relief from reflux has lasted as long as it has - I am grateful, particularly in light of the complications I experienced related to the surgery itself. In addition, I was one of the few that struggled with motility and was able to eat very little for quite a while after surgery. Eating triggered the release of a bubble from the stomach and whatever I ate sat on top of the bubble for a long time until the food could get beyond and reach the stomach, which again felt like acute chest pain. This lasted for about two months post-op, so I definitely don't want to repeat that if I can avoid it!
I will say that I experienced knee pain while on letrozole and I also saw an ortho doc. I had run into a trailer hitch in a parking lot but it was a minor bump. The resulting pain and inflammation was definitely outsized in comparison to the degree of injury - I had continued on my way after this bump, which should only have produced a bruise at most. I developed chronic and intense pain that lasted for several months, some days just walking was a challenge and stairs were next to impossible, pushing up with that leg just was too painful. The fix was a cortisone injection, and the problem went away for good. I assume that the incongruent pain from such a minor injury was due to the letrozole, but there is really no way to know. I did discuss this with the ortho and he didn't confirm or deny but said it is surely possible. Hoping for an easy fix for you as well.
Jul 23, 2020 09:51AM striveforhealth wrote:
SpecialK - Could it be possible that we are twins separated at birth??? lol I also had/have motility problems. Mine were some time after the second surgery along with some other GI issues. I am doing pretty well now with only an every now and again issue with food sitting in the esophagus causing an issue for me.
Thanks for your thoughts and your responses. I appreciate that. :-)
Jul 23, 2020 01:25PM SpecialK wrote:
strive - separated at birth...MAYBE????? Lol! Happy to help, and I hope you can get resolution of the knee pain asap!
Jul 30, 2020 09:38PM LillyIsHere wrote:
A question for you Ladies: Is Prolia better than Zometa and why? My MO recommended Zometa since it has shown to slightly reduce the recurrence.
Also, I had a knee pain and a big lump in the back of the knee that just showed up one day. I had never experienced anything like this before and I got worried. X-ray and MRI showed normal bones and ligaments, strange considering I've been in Letrozole for 8 months now, but fluid buildup in the knee and Baker's cyst in the back.
Jul 31, 2020 02:36PM - edited Jul 31, 2020 02:37PM by striveforhealth
My MO appointment is next week when I will be discussing meds for bone health...again. I had a left knee issue crop up and this has been distracting me in addition to being excruciatingly painful. I can barely walk.
LillyWasHere - Since you're having knee pain too I thought you would be interested....Initially my MO sent me for an ultrasound to rule out a blood clot....good news...no clot. Then I had a MRI of my knee and met with an ortho doc yesterday. Like you, the good news is it isn't a ligament or tendon tear. That's really good news. I do have bone marrow edema and a partially ruptured medium size popleital cyst (Baker's) with fluid build up in the back and side of the knee. He thinks these things are more than likely a result of favoring my right ankle which unfortunately has a failed tibial tendon repair from May, 2019. He gave me a cortisone injection in the knee which should kick in by Monday or so with instructions to lay off it. I've been kind of doing that already because it's too painful, but OK. It takes a while for the swelling to go down and heal. I wish you luck with your knee.
Sep 3, 2020 01:48PM LillyIsHere wrote:
striveforhealth, just saw your response. Thank you! You are right when you mention favoring one side of the body vs the other. I am reading that estrogen deprivation, in my case, does damage ligaments and I probably have this problem as well since I'm getting tennis elbow now :)
Sep 8, 2020 11:43AM striveforhealth wrote:
One thing after another LillyWasHere. Fun!! I would say that my knee is about 70% improved at this point. It's been a hard summer for me with this knee so I'm glad it's finally getting better. Keep persevering! :-)
Sep 9, 2020 04:16AM Rah2464 wrote:
I keep seeing in this thread ladies mention having a Bakers cyst. I developed one as well, about 6 months after starting Tamoxifen. Makes me wonder if there is a correlation. I had never had anything like that before, no knee issues. I too, went through the X-rays to make sure there was no other issue such as a blood clot.
My next dexa scan is in two weeks as part of a workup to transition me from Tamoxifen to an AI. According to my MO I have to be fully menopausal for two years before she can switch me. But sometimes I wonder if it is the devil you know versus the devil you don't know. After my diagnosis, my MO ordered a dexa scan for a baseline which showed osteopenia. I have been trying to up my calcium, magnesium, D, and K as well as exercise so I am curious to see how I am doing. The tamoxifen really drives my weight down for some reason so who knows which way this thing will go.
Sep 9, 2020 09:02AM striveforhealth wrote:
Hello Rah2464. I had been on Tamoxifen for only 2 months when I got the diagnosis of Baker's cyst along with bone marrow edema. Were you in a lot of pain with the cyst? My MO and the ortho doc did not think the medication caused this. Who knows? The good news is my knee is healing. I'm post-menopausal so I would have been prescribed an AI if I didn't already have osteopenia. My MO felt that tamoxifen would help my bones so Tamoxifen it is for me. Did your MO suggest bone building medication for you? BTW, I've had the opposite reaction with my weight....gained about 15 lbs!! Ugh! It came on effortlessly and is so hard to get back to my original weight.
Sep 10, 2020 03:46AM Rah2464 wrote:
Strive - no the baker's cyst has not been painful at all, just ugly. Especially on my scrawny legs now stands out considerably. I think I will break down and get it drained soon because it has been there a year already and doesn't appear to want to depart on its own. I did have lots of bone pain the first year on Tamoxifen, especially in my shins. Its better now but I still get the daily "mystery pain" that twinges somewhere - a toe, a finger, that type of thing so bizarre.
Glad to hear your knee is better. My MO has not prescribed any bone building meds as of yet. That may change based upon this Dexa scan. Cannot see how I can have a good result with me being so thin now even with all my efforts. I have always been thin but I am now 10-12 lbs less than when I began this journey, about the weight I was in high school. Good grief.
Sep 20, 2020 04:00PM striveforhealth wrote:
Thanks for responding back Rah2464. I would say that my knee is now about 80% healed....hate to even say that because I don't want to jinx myself. lol I have very little pain now...so much better to not be limping around and wincing. We have put our house in CT up for sale so I really needed to have my knee in better shape to get things done. We are packing up 28 years of "stuff" and memories! A lot of physical and emotional work for sure. I'm just hoping that the Tamoxifen is doing what it's supposed to be doing. I think I mentioned that low weight has never been an issue with me....however, overweight has been a challenge. I have gained since being on Tamoxifen and no matter what I do I can't shed those extra pounds.
Be well and eat up...milkshakes, french fries and burgers....that should help you add a few extra pounds.
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