Everything quit working

Posted by oldfords @oldfords, Mar 15 10:17am

I have been taking nebequa, lupron and chemo for two years and all has quit working and PSA is back to 6.08 Now I guess I will start Xtandi, Orgovyx, and Plavicto. Has anyone else taken this combination? MyPet Scan showed tumers are growing, But I have no pain. I also had two deep bone biopsy, but my bones are too hard to get enough sample to run many of the tests they wanted. What a mess, I guess I will just keep going and see what happens

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Profile picture for bajjerfan @bajjerfan

Man with my issues with ED from PreGabalin I don't think I'd want an erection that badly. It makes my libido feel like -50 on a scale from 1-10. I can't imagine it would even feel good.
Quite a few years ago my PCP prescribed a med called Accupril for high BP. It killed my ability to get it up big time. There wasn't enough Viagra in Iowa to overcome it.

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@bajjerfan

I guess the fact that it kills my libido makes abstince easier to tolerate along with the fact that if I got off of it the outcome would be worse. Also I think it might be possible that getting off and back onto a med might affect how well it works. Just IMO.

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Profile picture for bajjerfan @bajjerfan

@bajjerfan

I guess the fact that it kills my libido makes abstince easier to tolerate along with the fact that if I got off of it the outcome would be worse. Also I think it might be possible that getting off and back onto a med might affect how well it works. Just IMO.

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@bajjerfan
If you can stay undetectable for a year or a year and a half with ADT, then stopping it does make sense for a lot of people. I know people that have gone years without having to go back on, even though they had high Gleason scores. Some people may have only gone a year, but going back on ADT drops their PSA back down. I know one guy who’s taken five breaks, Each time his PSA comes back but the drugs keep him under control when he starts them again. The only thing he noticed is that the amount of time he can take a break is shorter each time he does it.

It does make sense for even people with aggressive prostate cancer to do this.

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Profile picture for jeff Marchi @jeffmarc

@bajjerfan
If you can stay undetectable for a year or a year and a half with ADT, then stopping it does make sense for a lot of people. I know people that have gone years without having to go back on, even though they had high Gleason scores. Some people may have only gone a year, but going back on ADT drops their PSA back down. I know one guy who’s taken five breaks, Each time his PSA comes back but the drugs keep him under control when he starts them again. The only thing he noticed is that the amount of time he can take a break is shorter each time he does it.

It does make sense for even people with aggressive prostate cancer to do this.

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@jeffmarc
I am not on any ADT treatment. I was referring to Pregabalin which causes ED and kills my libido. I don't if it's possible to have a healthy libido, but still get ED. In my way distant past I have had a couple of instances of failure to perform, but still had the desire so I assume they are mostly independent of each other.

If I get off of PreGabalin too often I fear it may start not to work as well. Best leave well enough alone.

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Profile picture for bajjerfan @bajjerfan

@jeffmarc
I am not on any ADT treatment. I was referring to Pregabalin which causes ED and kills my libido. I don't if it's possible to have a healthy libido, but still get ED. In my way distant past I have had a couple of instances of failure to perform, but still had the desire so I assume they are mostly independent of each other.

If I get off of PreGabalin too often I fear it may start not to work as well. Best leave well enough alone.

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@bajjerfan
This does not appear to be a prostate cancer treatment. What is the reason you take it?

It is said to be used to treat nerve pain, fibromyalgia, and epilepsy.

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Profile picture for jeff Marchi @jeffmarc

@bajjerfan
This does not appear to be a prostate cancer treatment. What is the reason you take it?

It is said to be used to treat nerve pain, fibromyalgia, and epilepsy.

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@jeffmarc

As far as I remember @beaquilter husband was prescribed that as a sleep aid.

IMHO that is really very strong medication if used that way. Since it is not addictive doctors are throwing pergabalin on patients for everything under the sun : / and when I say "heavy" I mean HEAVY ! I took only one pill ( when I had some damage to my lingual nerve) and had "out of body experience" @@ !!! Needless to say, I never took another one ...

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Profile picture for jeff Marchi @jeffmarc

@bajjerfan
This does not appear to be a prostate cancer treatment. What is the reason you take it?

It is said to be used to treat nerve pain, fibromyalgia, and epilepsy.

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@jeffmarc

I was taking GabaPentin for nerve pain, but it never helped me much. When I was recovering after lumbar surgery one of the hospitalist doctors switched me to PreGabalin. I don't know if it did much for the nerve pain, but it did help me with chest pain from diabetic neuropathy as well as semi severe itching from some unknown malady, but probably neuropathy of some sort. It doesn't help with my current pain issues which leads me to believe that it's not nerve related.

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Profile picture for bajjerfan @bajjerfan

@jeffmarc

I was taking GabaPentin for nerve pain, but it never helped me much. When I was recovering after lumbar surgery one of the hospitalist doctors switched me to PreGabalin. I don't know if it did much for the nerve pain, but it did help me with chest pain from diabetic neuropathy as well as semi severe itching from some unknown malady, but probably neuropathy of some sort. It doesn't help with my current pain issues which leads me to believe that it's not nerve related.

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@bajjerfan
I’ve never heard that gabapentin was useful for nerve pain. At least I know now it doesn’t help.

To try to resolve the nerve pain get a hold of a palliative care doctor, You can probably get a referral from one your doctors.They can work with you to try to resolve any kind of medical problem you have at to least make you feel better. I would imagine nerve pain would be one of their common issues.

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Profile picture for jeff Marchi @jeffmarc

@bajjerfan
I’ve never heard that gabapentin was useful for nerve pain. At least I know now it doesn’t help.

To try to resolve the nerve pain get a hold of a palliative care doctor, You can probably get a referral from one your doctors.They can work with you to try to resolve any kind of medical problem you have at to least make you feel better. I would imagine nerve pain would be one of their common issues.

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@jeffmarc
That was what my first pain doc recommended it for.

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Profile picture for surftohealth88 @surftohealth88

@jeffmarc

As far as I remember @beaquilter husband was prescribed that as a sleep aid.

IMHO that is really very strong medication if used that way. Since it is not addictive doctors are throwing pergabalin on patients for everything under the sun : / and when I say "heavy" I mean HEAVY ! I took only one pill ( when I had some damage to my lingual nerve) and had "out of body experience" @@ !!! Needless to say, I never took another one ...

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@surftohealth88
Hopefully I replied correctly.
Yes my husband was prescribed the lowest dosage of gabapentin for sleeping, one pill at night didn't work, the next month they said to take two pills, it still didn't work for sleep but it changed his mood for the better and hot flashes disappeared!
After a month on it now PSA didn't go down it technically went up from the previous month (from 0.19 to 0.2)
He immediately thought it was gabapentin and has stopped it. We'll see in two weeks if PSA is just steady or what and then he might go back on it.
Still need something to sleep!

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Profile picture for jeff Marchi @jeffmarc

@bajjerfan
I’ve never heard that gabapentin was useful for nerve pain. At least I know now it doesn’t help.

To try to resolve the nerve pain get a hold of a palliative care doctor, You can probably get a referral from one your doctors.They can work with you to try to resolve any kind of medical problem you have at to least make you feel better. I would imagine nerve pain would be one of their common issues.

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@jeffmarc After my husband had surgery at Mayo Rochester for oropharynx cancer, his Mayo surgery team prescribed gabapentin for nerve pain, caused by them moving nerves around in his neck during the surgery on his tonsil and lymph nodes.

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