Osteoporosis and Osteopenia treatment and prostate cancer?

scottbeammeup,
I don't have any side effects at all with Forteo. An advantage with Forteo and Tymlos is that they leave your system within 4 to 24 hours. So if you don't tolerate you just stop taking it and try something else. Reclast is particularly fraught because is can affect you for an entire year. Prolia is worse because even though it is six months, you can't stop taking it without risking multiple fractures. You have to take Reclast after.
Zometa, the same drug as Reclast, is given at lower doses and in intervals of months. A person is less likely to have intense side effects because the dose is lower. I think that most people ache in the joints with this class of drug.
Did you have a bone scan before ADT. It strikes me that your bone loss is fairly rapid. Is it possible that you have secondary cause for osteoporosis.

scottbeammeup,
with those T scores, I'd ask for an anabolic. It simply builds better bone and faster. You can completely circumvent the effect of testosterone loss on the bone with Tymlos or Forteo.
When your testosterone levels rise again (and I feel certain they will), you probably won't need the anabolic. The anabolics are a little inconvenient because they are a daily injection with a tiny needle. I'm on Forteo and consider it an amazing medication.

Sure is good to have a dentist on here to give us the inside information.

My dentist’s office requires that I give them a list of all my medication’s. Did you do that? Did you have a Count of how many total people were on Xgeva and Zometa, Two people had necrosis out of X on Xgeva or Zometa.

Do you recall which drug those two people were taking that caused it.

I know when I fill out the medication list it’s drug, drug, drug so I’m not sure the software has the ability to filter that information If someone wanted details.

Thanks. My readings were all around the -2.5 range, with a couple over -3 and none higher than -1.5. The reason the doctor is suggesting a bone building medication is that my testosterone started to come back (was in the 300s) but now is dropping again (in the 100s) instead of increasing and he thinks I may have testicular failure. I'm noticing all the old ADT symptoms starting to come back even though I haven't taken Orgovyx in 5 months. They're still not as bad as before except the mental ones but I think that's just me feeling crushed by yet another setback.

Thank you. The oncologist doubts that I have bone metastasis because my post-ADT testosterone readings have consistently dropped .4 to .1 and now to .04. Do the stronger bone building medications also have stronger side effects? I really feel I was misled re Orgovyx side effects and am going to be EXTREMELY cautious about ever taking any medication again.

A doctor might prescribe medication at any point after -1, depending upon other risk factors.
If there is a possibility of cancer metastasis to the bone, bisphosphonates are generally prescribed. And commonly if you are on long term ADT bisphsophonates or Prolia are prescribed.
If you were on short term ADT and have quit the, likelyhood is that you would wait for testosterone to restore bone.

When I had a bone scan and a PSMA pet test I was informed that there was a metastasis on my L4. I was not told anything about a reading. I was just told that I had a metastasis.. If there is a metastasis, then SBRT radiation can frequently eliminate it. That should be your concern more than the reading. Did they find a metastasis?

If you get SBRT then because cancer has reoccurred, you want to go on ADT to try to prevent it from spreading to other parts of your body. You don’t want to let it sit there and not treat it, But just going on ADT is not enough of a solution for a bone metastasis, if you’re looking for long-term survival. ADT will probably stop a Metastasis from growing further, but that’s only for a matter of time, before it starts to grow again.

Hate to intrude on that thought, but while in practice I had two patients with osteonecrosis of the jaw; not pretty and very difficult to treat.
They could just be those few statistically unlucky to get it so you have to temper your decision with the risk vs the benefit.
If you have ANY dental issues - especially periodontally involved teeth (bone loss advanced enough to require extraction in the future) get those attended to BEFORE initiation of therapy; you cannot do any invasive dental procedures while on bisphosphonate type drugs.

I just had a bone scan with 1.7 1.8 reading. Apparently 2.5 is severe. What levels caused your drs to recommend drug therapy for it?

scottbeammeup,
Reclast is one of those drugs that some take with no side effects, many take and experience flu like effects for several days or a week, and some have extreme misery lasting a year or more.
If your bone loss is strictly testosterone loss, I'd suggest a stronger bone building medication Tymlos or Forteo. It your bone loss might be related to bone metastasis Reclast (zoledronate) would give you better protection. The injection is much easier, unless you have side effects.
Zoledronate is usually given to cancer patients. One advantage is that you can get it at a lower dose.
There is more buzz on Reclast on the osteoporosis support page where you'll find osteonecrosis and atypical femur fracture. https://connect.mayoclinic.org/search/?search=reclast+side+effects
There isn't any way to get Reclast out of your system. So you are pretty much trapped for a year. The few who are hospitalized are given IV steroids.