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

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@scottbeammeup

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.

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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.

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@scottbeammeup

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.

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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.

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@jeffmarc

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.

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Jeff, our office required full medical histories and lists of drugs. Many times I had no idea what these drugs were since they were so new; so you MUST use your PDR to find out what they do and if they will interact with anything you might be using.
I was constantly learning about new drugs and new diseases. Unfortunately, we did not keep statistical records of what percentage of patients were taking what drug; we were lucky that the software could do accurate billing and insurance filing! Today, the systems are much more sophisticated and robust.
Both patients were on Zometa for metastatic cancer - a woman with breast cancer and a man with cancer of “unknown origin”; baffles me to this day how a pathologist could be unable to identify what organ/gland a cell comes from.
Phil

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@gently

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.

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Hey gently, good info on this topic - good to have it broken down into the good vs bad.
As far as the anabolic is concerned, I always foolishly assumed that T was a major component - Along with HGH. Maybe I’m confusing them with PED’s?
What’s in them? Thanks,
Phil

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@heavyphil

Hey gently, good info on this topic - good to have it broken down into the good vs bad.
As far as the anabolic is concerned, I always foolishly assumed that T was a major component - Along with HGH. Maybe I’m confusing them with PED’s?
What’s in them? Thanks,
Phil

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Heavyphil, Tymlos and Forteo are parathyroid hormone-- the first 34 amino acids.

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@gently

Heavyphil, Tymlos and Forteo are parathyroid hormone-- the first 34 amino acids.

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Oh man, thanks for that….I’m thinking “anabolic steroid”!💪

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@gently

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.

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I did have a DEXA scan before starting radiation and ADT. My baseline had a couple areas that were -1s. My worst was -1.5. I didn't have any -2s and definitely not any -3s. The worst damage is in my hip area so I'm thinking maybe radiation also had something to do with it.

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@scottbeammeup

I did have a DEXA scan before starting radiation and ADT. My baseline had a couple areas that were -1s. My worst was -1.5. I didn't have any -2s and definitely not any -3s. The worst damage is in my hip area so I'm thinking maybe radiation also had something to do with it.

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scottbeammeup,
I had a similar experience. After radiation I had a -5.6 on dxa in the femur. I wasn't able to verify cause but had edema in the sacrum. I speculate that the dxa measured an area of edema. So edema weakens the bone, but can resolve more quickly than genuine bone loss. This is complete speculation on my part. I haven't had dxa reading that low since, -3.3 was the lowest.
Incorrect positioning for a dxa scan can skew the readings.
You might repeat the dxa in a few months. I would but I wouldn't delay a bone anabolic.
With this idea, I should add that radiation can damage bone in many ways--through the marrow, destruction of blood vessels within the bone, by increasing the number of acid producing cells in the matrix.
I'd be curious if a reading at a different facility would give you a better reading. If in a few months resolution of edema would change the low reading.
I do suspect that you are better off than it seems. Still, I wouldn't risk fracture by waiting.
And especially with all this information in consideration, I would suggest that you think about Forteo or Tymlos rather than an antiresorptive bisphosphonate.
Bless your choice.

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I was osteopenic prior to ADT, and ADT accelerated bone loss quite quickly. With my first infusion of Reclast, I had severe flu-like symptoms (nausea, high fever, dizziness, diarrhea) that lasted for about an hour 2 days after my infusion. After the symptoms passed, I was simply tired for about a week. After my second infusion, I had a mild fever, headaches, and fatigue for about a week. Tylenol addressed the symptoms. Some doctors require a signed release from your dentist prior to receiving the infusion. My dentist did say that should dental work involving the jaw become necessary, they would time it around my infusions, so that there would be less chance of necrosis.

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