Osteoporosis and Osteopenia treatment and prostate cancer?

Posted by scottbeammeup @scottbeammeup, Mar 21 9:33am

I am not recovering from Orgovyx as quickly as expected and my post treatment DEXA scan shows osteopenia and osteoporosis that was not present pre-treatment. My doctor is recommending an infusion of Reclast (Zoledronic acid) that he says will last for a year.

I am very concerned, though, about the listed side effects: esophageal cancer, jaw necrosis and atypical fractures. I'm also leery because it seems every drug causes new problems that require yet another drug which causes further problems, etc.

I don't want to be in yet another situation where the cure turns out to be worse than the disease which is what seems to have happened with Orgovyx.

Has anyone taken this medication or known anyone who has? Has anyone had any of these major side effects? Were they treatable? Do you think this drug was worth it for you?

Thanks

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I have been getting 3 month Zometa infusions for the last nine months. My oncologist preferred this over Xgeva because it has a lower chance of causing those Issues with jaw necrosis. Xgeva is rated a little more effective than Zometa, but it has higher risk. I will be getting it for 2 years.

I was on Fosamax for about five years, It also is for strengthening your bones. You’re only supposed to be on that drug for so long. That’s why I switched over to Zometa.. Easier to deal with infusions than the fosamax weekly fasting requirement.

I know a lot of other people that have been on Zometa and Xgeva, Haven’t heard a single case where it’s actually caused problems.

REPLY

Thanks. I guess they have to list the rare side effects for legal reasons. I called my doctor and he said he's never seen a case of esophageal cancer or jaw necrosis from anyone who took this drug, but that it will probably give me a fever for 2-3 days that will resolve. They do have a daily pill form but the once a year infusion seems easier.

REPLY

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.

REPLY

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?

REPLY
@jeffmarc

I have been getting 3 month Zometa infusions for the last nine months. My oncologist preferred this over Xgeva because it has a lower chance of causing those Issues with jaw necrosis. Xgeva is rated a little more effective than Zometa, but it has higher risk. I will be getting it for 2 years.

I was on Fosamax for about five years, It also is for strengthening your bones. You’re only supposed to be on that drug for so long. That’s why I switched over to Zometa.. Easier to deal with infusions than the fosamax weekly fasting requirement.

I know a lot of other people that have been on Zometa and Xgeva, Haven’t heard a single case where it’s actually caused problems.

Jump to this post

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.

REPLY
@billfarm

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?

Jump to this post

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.

REPLY
@billfarm

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?

Jump to this post

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.

REPLY
@gently

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.

Jump to this post

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.

REPLY
@gently

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.

Jump to this post

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.

REPLY
@heavyphil

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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.