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Posted 3/11/2017 8:54 AM (GMT -5)
In March 2016, I had a normal bone density test. This test was done when my radiation/hormone Treatments started.

Had a follow up bone density test yesterday. Told that I have Osteopenia. Z-score = -1.3. Test site Distal Radius (Wrist)

As I understand it, Osteopenia is bone loss That hasn't gotten to the level of osteoporosis. Radiation is a cause.

I take a Vitamin D supplement. I walk a lot but Exercise level has decreased since Christmas due to two separate, month long colds.

Looking for suggestions to stop/reverse this condition.

BTW, In late January, I tripped on a curb and fell on my left hip. Ouch. My mobility is fine but I still have a very minor sensation there. Fortunately, when I fell, I landed on a leather bag that I was carrying

Al
Posted 3/11/2017 11:16 AM (GMT -5)
My husband has a similar story. He had DaVinci in 2010, followed by radiation. In April he tripped while walking and broke his shoulder. When the orthopedist saw his x-ray he said he guessed that my husband had had prostate cancer by how frail his bones were. He then had a bone density test and he has osteoporosis in one of the areas that was scanned (I don't remember which one). He walks or goes to the gym every day, eats healthy, and is careful while walking. I have read that weight bearing exercise is the best thing to do to strengthen your bones.
Posted 3/11/2017 12:17 PM (GMT -5)
One of the questions on the intake sheet for my scan was "have you had prostate cancer?" I wasn't aware of a relationship of ostopenia from radiation or surgery but definitely from hormone therapy. Something else to keep up with. Sigh.
Posted 3/11/2017 12:45 PM (GMT -5)
I never heard of that before - and highly doubt that it's true. How would radiation to the prostate cause bone loss at the wrist? A known and much more likely cause is the Lupron.
Posted 3/11/2017 1:31 PM (GMT -5)
Physician Assistant discussed the bone scan that I had yesterday. The drop in bone density was significant in his opinion. Going back for a retest in 3 weeks. He said that the extensive radiation has caused bone loss - Osteopenia. I'm sure that my age, along with the Lupron was also a factor. I'll ask him about that.

TA, As I understand it, the test site (wrist) is not the only place where I have bone loss. Logically, if I have bone loss there, I have it in the rest of my skeleton.

Al
Posted 3/11/2017 1:37 PM (GMT -5)

Tall Allen said...
I never heard of that before - and highly doubt that it's true. How would radiation to the prostate cause bone loss at the wrist? A known and much more likely cause is the Lupron.

I was going to write something similar. The low testosterone over many months is known to affect bone remodeling. I can't see a biological reason for the typically short-term (1-45 days or so) radiation therapy to the prostate to be a significant factor in weakening of (far-away) bones.

PS: I found out that, prior to hormone therapy, I already had osteoporosis in my spine (and osteopenia in my hips). There is controversy whether osteopenia is a real disease, or just something dreamed up by the pharmaceutical industry to promote the selling of bisphosphonates and similar drugs. Whatever, weight-bearing exercises are highly recommended for patients with osteopenia and/or osteoporosis and, unlike the drugs, have NO side effects.

PS#2: Ca and vit D are important as well to promote healthy bones. Make sure your intake is appropriate for your age.
Posted 3/11/2017 2:00 PM (GMT -5)
Manfred-

That's exactly my point. Radiation is localized - it cannot cause bone loss in remote places. Your bone loss had to be from systemic therapy. ADT is a known factor for systemic bone loss. Why look further than that for a cause? You have an opportunity to educate that PA.
Posted 3/11/2017 2:02 PM (GMT -5)
Being of Scandinavian decent, I started this journey with osteopenia. I am on zometa infusions every 6 months to help prevent further density loss from ADT. I also take my calcium and vitamin D supplements. Unfortunately I have too many other issues going on to keep up a healthy exercise regimen so hopefully everything else is enough for now. I will find out when I do another bone density test in a few months. Good luck to you with your density issues. -JR
Posted 3/11/2017 2:05 PM (GMT -5)
TA - I'll definitely discuss with the PA in 3 weeks.

Going forward, I need to get back to the gym regularly, watch my weight and be more careful - I can't fall

Al
Posted 3/11/2017 2:44 PM (GMT -5)
It's possible you had low T for years before being diagnosed with prostate cancer (like I obviously did). I found out after being picked up from routine blood work after my cancer surgery. I asked for bone density test because I knew of link between low T and osteoporosis in men. Fortunately I found an endocrinologist who was willing to give me T even though I was 3 years out from prostate cancer surgery, a big controversy in those days. After using T for 3 years my bone density is much improved. I realize you can't take it now because you're just starting ADT and they want to drive your T low. But there are other drugs u could take to improve your bone density now, u should definitely ask ur doctor...
Posted 3/11/2017 3:13 PM (GMT -5)
My baseline bone density test at initiation of hormone therapy was normal. T values around 0, where they should be.

After just 18 months on Lupron+Casodex (ADT2), I was found by a DEXA scan to have osteopenia. My hip area T value was -2.3, and -2.5 is the border for actual osteoporosis. (I'm 1/4 Swedish; why is Scandinavian descent a risk for this?).

My new onco was kind of scoffing about the whole bone loss issue, saying "Well yeah, it's overstated, and this is not usually a problem.". He looked at my actual 1st scan results, and then said, "Well yeah, we need to keep an eye on this."!

I've been on Prolia, calcium supplements, D3, and quite regular weight-resistance exercise for almost 2 years. A retest at 3 years showed no further deterioration, and actually a small improvement to -2.0. Nothing much to celebrate, but at least it wasn't worse.

The ADT2 is a known cause of this bone density loss, but I was surprised how fast and how much mine had declined. This ADT2 ended a year ago. Unless it has to begin again, the bone density is likely to continue to improve. If I have to restart hormone therapy, we'll just have to keep checking it every other year.

It does worry me with my favorite pastime being motorcycling. A moderate unplanned get-off could cause me serious injury if my bone density is so compromised.
Posted 3/11/2017 11:06 PM (GMT -5)

Hello !

I've been on continuous ADT hormone shots since my diagnosis in 2013.

Shortly thereafter, a bone density test showed that I had the beginning stages of osteopenia.

The bone density test was relatively quick, easy, and noninvasive.

My doctors prescribed Vitamin D and also daily calcium pill supplements to boost bone strength.

ADT hormone shots such as LUPRON, FIRMAGON, and ZOLADEX, in essence, begin to "leech away" bone density and bone strength.

I, like some of you posting on this thread, am mostly Scandinavian in my heritage.

Some research indicates that those of Asian or Scandinavian descent can be more likely to have bone density issues.

To build back bone density, my oncologist has prescribed PROLIA injections.

You might have seen the advertisements for PROLIA on television or in magazines.

The PROLIA injections are given every six months. In my case, they are covered by my insurance.

I know when posting a thread topic, it is good to hear from a wide variety of respondents, so I thought I would share my first-hand experiences in overcoming osteopenia, with the help of daily calcium pills and PROLIA injections, every six months.

Sent with my best,
"Cyclone Fan" ~ Iowa State University
Posted 4/10/2018 9:02 PM (GMT -5)
Another Bone density test this week - Z score dropped to -1.7 from -1.3. Still in the Osteopenia zone.

PA wants me to start Prolia shots. Also wants to add some calcium supplements with my dose dependent on my recent Blood test Calcium level.

I might request a Dexa Scan. As I understand it, this is a full body bone scan.

Before I do anything, wanted to check here for some comments.

Should I request the Dexa Scan or is the Quick wrist test good enough?

Any issues or side effects from the Prolia shots?

Retest and follow up in three months.
Posted 4/11/2018 12:03 AM (GMT -5)
I was diagnosed with osteopenia about 10 years ago. I have taken Vitamin D supplements and done strength training with weights ever since. My bone density is now better than average for my age group.
Posted 4/11/2018 7:31 PM (GMT -5)
I was diagnosed with osteopenia as they were sorting out the Lupron / Prolia scheme. That has progressed to osteoporosis as time passes.

I do take calcium, vit D, and vit K2 (on doc's advise) to try to keep it at bay.
Posted 4/11/2018 9:33 PM (GMT -5)

TimG said...
I was diagnosed with osteopenia about 10 years ago. I have taken Vitamin D supplements and done strength training with weights ever since. My bone density is now better than average for my age group.

142 said...
I was diagnosed with osteopenia as they were sorting out the Lupron / Prolia scheme. That has progressed to osteoporosis as time passes.

I do take calcium, vit D, and vit K2 (on doc's advise) to try to keep it at bay.

I was about to suggest(highly recommend) researching V K2 as an addition to the Vit D, as well as magnesium. Some years ago, my wife was diagnosed with osteopenia, and her doctor prescribed one of those bisphosphonates, take 1 pill ever so often. She had a horrible response SEs from that 1st pill, ironically severe joint and bone pain, and said "to heck with that" and took no more of them. She got more aggressive with her vitamin D(2000 iu per day?), calcium and magnesium and has not worsened over these last 8 or 9 years. More recently she has joined me with adding some K2. I personally feel that all of those items are actually more important than the calcium, depending on your diet of course. But I am only suggesting that you research this for yourself. You may, or may not, find those additions worth while.
( PS: all of the above is in relation to bone halth in general, I have no idea how it might relate to problems caused by PCa treatment. But I do see 142's doc has recommended all but the magnesium.)

And I forgot, also strontium(always with MORE calcium than strontium), another one you might want to look into.
/www.ncbi.nlm.nih.gov/pubmed/16856092

/www.ncbi.nlm.nih.gov/pubmed/25480348

Also notice that strontium is included here with the drugs recommended for osteoporosis, though I believe it is available as a supplement. Of course, check with your doctors! There is some question about possible cardiac SEs, but a 2014 study "did not find evidence for a higher risk for cardiac events associated with the use of strontium ranelate in postmenopausal osteoporosis." Also, of course, most of these studies are on women, as the usual suspects for osteoporosis.
/www.ncbi.nlm.nih.gov/pmc/articles/PMC5688964/

Somebody said...
Treatment with strontium ranelate is effective at reducing the risk of vertebral, nonvertebral, and hip fractures in women with postmenopausal osteoporosis. Strontium ranelate has been evaluated in two clinical trials with durations of 5 years—with the main analysis carried out after 3 years—involving more than 7000 women. The results at 3 years showed that the drug reduced the risk of vertebral, nonvertebral, and hip fractures (in a high-risk subgroup) by 41, 16, and 36%, respectively. The results at 5 years confirmed the results observed in the first 3 years. The drug modestly increases bone formation markers (ca. 15%) while simultaneously reducing those of bone resorption

Post Edited (BillyBob@388) : 4/11/2018 9:15:50 PM (GMT-6)

Posted 4/12/2018 12:25 AM (GMT -5)
I didn't know that Magnesium is bone-friendly. I take it as a sleep aid, so it's nice to know that my bones may be strengthened as well.
Posted 4/12/2018 7:04 AM (GMT -5)

Manfred said...
Any issues or side effects from the Prolia shots?


Prolia and bisphosphonates are known to cause osteonecrosis of the jaw. I've had extensive dental work since starting Lupron and my oral surgeon will not work on anyone who has had bisphosphonates.

Vitamin K increases ("improves") blood clotting. Anyone on blood thinners should be aware of that.

Magnesium is a great sleep aid and facilitates calcium absorption. Various compounds have different absorption rates as well as GI SE's.
Posted 4/12/2018 10:12 AM (GMT -5)

Manfred said...
Another Bone density test this week - Z score dropped to -1.7 from -1.3. Still in the Osteopenia zone.

PA wants me to start Prolia shots. Also wants to add some calcium supplements with my dose dependent on my recent Blood test Calcium level.

I might request a Dexa Scan. As I understand it, this is a full body bone scan.

Before I do anything, wanted to check here for some comments.

Should I request the Dexa Scan or is the Quick wrist test good enough?

Any issues or side effects from the Prolia shots?

Retest and follow up in three months.

A DEXA scan examines the spine and hips, not the whole body
My intuition says that the wrist test is a poor substitute for a DEXA scan, but it is way less expensive and better for mass screenings. There is a 'quickie' heel test as well.

Of course there are side effects for Prolia, like any other drug. One has to study the numbers and determine (maybe with input from your dentist) if the risk is acceptable.

PS: This is copied from the 'official' (Amgen) Prolia (denosumab) site:

5.4 Osteonecrosis of the Jaw

Osteonecrosis of the jaw (ONJ), which can occur spontaneously, is generally associated with tooth extraction and/or local infection with delayed healing. ONJ has been reported in patients receiving denosumab [see Adverse Reactions (6.1)]. A routine oral exam should be performed by the prescriber prior to initiation of Prolia treatment. A dental examination with appropriate preventive dentistry is recommended prior to treatment with Prolia in patients with risk factors for ONJ such as invasive dental procedures (e.g. tooth extraction, dental implants, oral surgery), diagnosis of cancer, concomitant therapies (e.g. chemotherapy, corticosteroids, angiogenesis inhibitors), poor oral hygiene, and co-morbid disorders (e.g. periodontal and/or other pre-existing dental disease, anemia, coagulopathy, infection, ill-fitting dentures). Good oral hygiene practices should be maintained during treatment with Prolia. Concomitant administration of drugs associated with ONJ may increase the risk of developing ONJ. The risk of ONJ may increase with duration of exposure to Prolia.

For patients requiring invasive dental procedures, clinical judgment of the treating physician and/or oral surgeon should guide the management plan of each patient based on individual benefit-risk assessment.

Patients who are suspected of having or who develop ONJ while on Prolia should receive care by a dentist or an oral surgeon. In these patients, extensive dental surgery to treat ONJ may exacerbate the condition. Discontinuation of Prolia therapy should be considered based on individual benefit-risk assessment.



Posted 4/12/2018 10:37 AM (GMT -5)

Tim G said...
I didn't know that Magnesium is bone-friendly. I take it as a sleep aid, so it's nice to know that my bones may be strengthened as well.

RobLee said...
Prolia and bisphosphonates are known to cause osteonecrosis of the jaw. I've had extensive dental work since starting Lupron and my oral surgeon will not work on anyone who has had bisphosphonates.

Vitamin K increases ("improves") blood clotting. Anyone on blood thinners should be aware of that.

Magnesium is a great sleep aid and facilitates calcium absorption. Various compounds have different absorption rates as well as GI SE's.

Many years ago, when I was in my early fifties, I had a bone density test ( by ultrasound? ) done at the free health fair our hospital provided for employees. ( Got my 1st PSA, it was nice and low, maybe around 1? ) So as they are taking our blood pressure and samples, I notice there is a line with only women- the line for the bone density test. I decide to get mine done, the only man in that line! ( it was free, after all, and painless/non-invasive)

So they told me I have a bone density either equal to or greater than(can't remember which) an 18-30 year old woman. Whatever it was it was the top score for women, they did not even have the #s for men available. I have never really been able to find out for sure, but my guess is that was pretty good for a 50 something year old man. ( I have not done well finding data for men) I did find this: www.project-aware.org/Health/Osteo/osteo-when.shtml

Somebody said...
Once thought to be a natural part of aging among women, osteoporosis is no longer considered age- or gender-dependent. It occurs in all populations and at all ages. Starting in midlife, both men and women experience an age-related decline in bone density..............The dramatic aging-related decline in DHEA is seen by some as the main reason bone density begins to decrease long before menopause.14
Normally there is a decrease in bone mass after the age of 35-40. In persons with osteoporosis, bone loss is characterized by accelerated loss of calcium from bones without sufficient replacement.23 Many women mistakenly believe that osteoporosis is something they need be concerned about only after menopause; however, recent evidence indicates that osteoporosis often begins early in life and is not exclusively a postmenopausal problem.........


I don't think I was supplementing with vitamin D back in those days(wish I had been), and if I was it was no where near what I take today. But I do remember that I had been supplementing with magnesium for a number of years by then. I took it for general health reasons, possible benefits for blood pressure, sleep, etc. But I had also read it was good for maintaining bone mass, which is why it occurred to me to take that test while it was free. Even though I only scored > than or = to the best possible score for young women, and men normally have a higher bone density than women, I figure that was still a pretty good score, maybe better than average for a man my age, maybe. I have not been able to find out though what the actual #s are for men vs women at various ages. But I could not have gotten any better score based on what was available to me. Was it the magnesium? Or maybe just pure coincidence? No way for me to know I guess.

Post Edited (BillyBob@388) : 4/12/2018 9:42:37 AM (GMT-6)

Posted 4/12/2018 9:51 PM (GMT -5)
When I started Prolia, I first had to get a "clearance letter" from my dentist. This was to verify I didn't expect any major dental work. The risk of osteonecrosis of the jaw is apparently fairly significant, so they want to minimize the risk as much as possible.

I had no evident side effects from the Prolia, except a good-sized hole in my wallet. It's quite expensive, and the only way I could get it administered was as an outpatient hospital procedure (my onco's office is in a hospital's cancer center). Dumb, because it's just a simple injection. But the shot is so expensive my GP wouldn't even consider administering it because of the insurance hassles. No clinic outside of a hospital setting was willing to do it for me.

Oh, and since my ADT ended and testosterone has recovered we decided eventually to stop Prolia. That's not common either it seems, and no one seems real sure about how one responds to its withdrawal. The dentist still has me on enhanced-fluoride toothpaste to minimize dental risks, just in case.
Posted 4/13/2018 8:08 AM (GMT -5)

Redwing57 said...
When I started Prolia, I first had to get a "clearance letter" from my dentist. This was to verify I didn't expect any major dental work. The risk of osteonecrosis of the jaw is apparently fairly significant, so they want to minimize the risk as much as possible.

I had no evident side effects from the Prolia, except a good-sized hole in my wallet. It's quite expensive, and the only way I could get it administered was as an outpatient hospital procedure (my onco's office is in a hospital's cancer center). Dumb, because it's just a simple injection. But the shot is so expensive my GP wouldn't even consider administering it because of the insurance hassles. No clinic outside of a hospital setting was willing to do it for me.

Oh, and since my ADT ended and testosterone has recovered we decided eventually to stop Prolia. That's not common either it seems, and no one seems real sure about how one responds to its withdrawal. The dentist still has me on enhanced-fluoride toothpaste to minimize dental risks, just in case.

See Todd1963's new thread on the very subject of the risk of osteonecrosis of the jaw related to use of these drugs. ( EDIT: OOPS, never mind, I see you have already commented over there)

Post Edited (BillyBob@388) : 4/13/2018 7:21:27 AM (GMT-6)

Posted 4/13/2018 8:17 AM (GMT -5)

RobLee said...

Manfred said...
Any issues or side effects from the Prolia shots?


Prolia and bisphosphonates are known to cause osteonecrosis of the jaw. I've had extensive dental work since starting Lupron and my oral surgeon will not work on anyone who has had bisphosphonates.

Vitamin K increases ("improves") blood clotting. Anyone on blood thinners should be aware of that.

Magnesium is a great sleep aid and facilitates calcium absorption. Various compounds have different absorption rates as well as GI SE's.

I forgot to say earlier: I think that it is only vitamin K1 that has an impact on blood clotting, not the K2 which is so essential for bone and other health issues. To the degree that they have sometimes advise people on certain drugs to stay away from certain dark green vegetables that were naturally high in K1. I always thought that was not the best approach, since those foods and indeed vitamin K1 were so needed for overall health. What it amounted to was since the K1 would lower the effectiveness of the drug, rather than banning the healthy food, just give a bit more drug. They determine the amount needed via blood tests anyway.
Posted 4/13/2018 8:21 AM (GMT -5)

Redwing57 said...
When I started Prolia, I first had to get a "clearance letter" from my dentist. This was to verify I didn't expect any major dental work. The risk of osteonecrosis of the jaw is apparently fairly significant, so they want to minimize the risk as much as possible.

I had no evident side effects from the Prolia, except a good-sized hole in my wallet. It's quite expensive, and the only way I could get it administered was as an outpatient hospital procedure (my onco's office is in a hospital's cancer center). Dumb, because it's just a simple injection. But the shot is so expensive my GP wouldn't even consider administering it because of the insurance hassles. No clinic outside of a hospital setting was willing to do it for me.

Oh, and since my ADT ended and testosterone has recovered we decided eventually to stop Prolia. That's not common either it seems, and no one seems real sure about how one responds to its withdrawal. The dentist still has me on enhanced-fluoride toothpaste to minimize dental risks, just in case.

My Uro administers Prolia injections in his office just as he does Lupron. Ultimately I decided against Prolia but other guys in the waiting room were getting theirs. My dentist also required a letter from my RO before he would begin work on my extensive dental needs, which included much bone planing and some gum grafts. And I've been on the Rx toothpaste since starting HT. So I guess for those who are new to this, this seems to be a fairly common protocol for those on long term therapy.

Edited to include Redwing's post I was responding to.

Post Edited (RobLee) : 4/13/2018 7:46:56 AM (GMT-6)

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