What is the thought process for this?

Posted by scottbeammeup @scottbeammeup, 22 hours ago

I'm one year post-Orgovyx and 18 months post SBRT radiation. My testosterone is 220 and has been dropping instead of climbing with my doctor thinking I may be having testicular failure. My PSA is .04 which they told me is excellent for still having a prostate.

As a result of low T, my DEXA scan shows osteoporosis and osteopenia, and I'm developing metabolic syndrome (high cholesterol, pre-diabetes, etc.), and still having tiredness and inability to put on any muscle despite working out like a maniac.

My doctor wants to put me on a bone building medication, a statin, and possibly a diabetes drug. I asked "why not just raise my T to normal so that these side effects go away" and the response was that it's too dangerous to do this.

This makes no sense to me--it seems that taking three medications for side effects is a lot more dangerous than supplementing with TRT and stopping if my PSA started to rise. This especially seems true given that I have a lot of "runway" before I reach a PSA of 2.04 which would be considered a BRC. I asked about this and was, again, told the same thing about T being too dangerous.

Am I missing something really obvious here? I really don't like the idea of having to take three more medications and am especially scared of bone building drugs since I've read that the side effects of those can be brutal pain and inability to move for weeks or months.

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Sorry, I don't have an answer, but I will be watching this thread since it sounds like I'm about 2 years behind you. (Intact prostate treated with Orgovyx and radiation.) I will say one thing. You are trying to apply common sense to treatment options. I have noticed that they are often mutually exclusive.

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Your doctor should’ve put you on bone strengtheners the moment you went on ADT. Waiting this long is really not good medicine, It makes me think your doctor is inexperienced.4

I was put on Fosamax For six years when I started ADT. It has kept my bones strong, and they don’t break when I fall (A very infrequent experience). I’m now on Zometa infusions that I get every three months. I’ve never had any bone pain from any of those drugs. Not sure where you’re finding out that people are having that problem, but I have not heard about that happening except in rare cases. Taking a Fosamax pill once a week in the morning sure didn’t cause any problems.

At a Prostate cancerconference a few months ago a bone doctor discussed how ADT makes the bones weak. He said that everyone on ADT should be on bone strengtheners as soon as they start. I guess your doctor never listened to that information.

At least your doctor does understand that having your testosterone rise too high is going to affect your PSA and may cause your cancer to reoccur sooner. A lot depends on what they found in your biopsy. Your Gleason score is very important to understand what’s going on, but you didn’t mention it. Was anything else found in your biopsy that was negative like intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. Any of those can make your cancer much more aggressive.

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Profile picture for jeff Marchi @jeffmarc

Your doctor should’ve put you on bone strengtheners the moment you went on ADT. Waiting this long is really not good medicine, It makes me think your doctor is inexperienced.4

I was put on Fosamax For six years when I started ADT. It has kept my bones strong, and they don’t break when I fall (A very infrequent experience). I’m now on Zometa infusions that I get every three months. I’ve never had any bone pain from any of those drugs. Not sure where you’re finding out that people are having that problem, but I have not heard about that happening except in rare cases. Taking a Fosamax pill once a week in the morning sure didn’t cause any problems.

At a Prostate cancerconference a few months ago a bone doctor discussed how ADT makes the bones weak. He said that everyone on ADT should be on bone strengtheners as soon as they start. I guess your doctor never listened to that information.

At least your doctor does understand that having your testosterone rise too high is going to affect your PSA and may cause your cancer to reoccur sooner. A lot depends on what they found in your biopsy. Your Gleason score is very important to understand what’s going on, but you didn’t mention it. Was anything else found in your biopsy that was negative like intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. Any of those can make your cancer much more aggressive.

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Jeff- does that apply for short term ADT also (4-6 mos) ?

REPLY
Profile picture for jeff Marchi @jeffmarc

Your doctor should’ve put you on bone strengtheners the moment you went on ADT. Waiting this long is really not good medicine, It makes me think your doctor is inexperienced.4

I was put on Fosamax For six years when I started ADT. It has kept my bones strong, and they don’t break when I fall (A very infrequent experience). I’m now on Zometa infusions that I get every three months. I’ve never had any bone pain from any of those drugs. Not sure where you’re finding out that people are having that problem, but I have not heard about that happening except in rare cases. Taking a Fosamax pill once a week in the morning sure didn’t cause any problems.

At a Prostate cancerconference a few months ago a bone doctor discussed how ADT makes the bones weak. He said that everyone on ADT should be on bone strengtheners as soon as they start. I guess your doctor never listened to that information.

At least your doctor does understand that having your testosterone rise too high is going to affect your PSA and may cause your cancer to reoccur sooner. A lot depends on what they found in your biopsy. Your Gleason score is very important to understand what’s going on, but you didn’t mention it. Was anything else found in your biopsy that was negative like intraductal, cribriform, Seminal vesicle invasion, EPE or ECE. Any of those can make your cancer much more aggressive.

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Thanks Jeff. I didn't know there was a pill version of bone meds. I'm definitely going to ask for that since if it does have a lot of bad side effects I can always stop.

My Gleason score was 4+3 based on one core being 4+3, a couple 3+4's, some 3+3s and some benigns. No intraductal, cribriform, seminal vesicle invasion, EPE or ECE but one benign sample did mention "high grade prostatic intraepithelial neoplasia (PIN)" if that's significant

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Profile picture for surftohealth88 @surftohealth88

Jeff- does that apply for short term ADT also (4-6 mos) ?

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According to that bone doctor that discussed this at that prostate cancer conference, everyone on ADT should be taking something for bone strengthening. I would imagine that someone only on it for 4 to 6 months could avoid that, As long as their DEXA scan showed that they were in good shape.

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Profile picture for jeff Marchi @jeffmarc

According to that bone doctor that discussed this at that prostate cancer conference, everyone on ADT should be taking something for bone strengthening. I would imagine that someone only on it for 4 to 6 months could avoid that, As long as their DEXA scan showed that they were in good shape.

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My pre-ADT Dexa was OK but post it isn't. I think it's because my testosterone return is EXTREMELY slow and my Estradiol is almost nonexistent.

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