Is there an average and/or an expected drop in PSA after Lupron shot?

Posted by olman @olman, Jul 24 3:25pm

I read in one of the other posts here that “ you didn’t provide enough info “
Since I’ve been moved from my regular VA regime to the Oncology Clinic; what strange to me is how little “ the team “ tells me. So after my first Lupron shot I wasn’t told anything about what to expect. After my second shot my PSA must have dropped so much that everyone reacted as if I hit the lotto. But although I know it dropped about 100 points. I still have no idea what it all means. And all I was told is “ unless you’re hit by a bus you can rest assured that you will die from this cancer.
Talk about not providing enough info!

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

Profile picture for olman @olman

Thanks for the reply Jeff. Getting older has been most difficult as I become either wiser or more judgmental; not understanding how and why I’m so unfamiliar with the in’s and outs of this cancer.
When I was told to report to the oncology clinic and showed up, one of the nurses met with me to explain why I was transferred to the clinic from regular urology appointments. She went on: “ you’re here because we want to know why your PSA has been going up AFTER A Prostatectomy. “ She reminds me of the history: 6 months ago your PSA was 60, then a few months ago it rose to 100, then a couple of months after that it hit 112” I interrupted her to first say: “ I still have my prostate” She immediately replied: “ No you don’t. It says right here in your records that you prostate is missing “ ( strange choice of words, it would have made more sense to me is she gave me a date that it was removed ) She dives back into the records perhaps looking for that information. But she misinterpreted, I later found out; words to the effect that my “ pelvic floor was empty “ or something akin to that which were the words of someone in the process who read the so called definitive test which I’ve seen it mentioned here; which involves a PET and CAT SCAN done at the same time. I had that test conducted twice 3 months apart.
The first time it was ordered by my Urologist, who called me the minute he got the results, which was before I returned home after the test ( about 90 minutes after the test. I really like my urologist who was sincerely concerned that I hadn’t done anything since the cancer dx and warmed me that with a PSA OF 100 I very likely had the cancer Metastasize into my bones or other likely places that this cancer goes if not treated in some approved way ( hormone therapy and or radiation ) My doctor excitedly said I’m calling you about the results of you test which presents both positive news and a mystery. “ The cancer has not spread but that it hasn’t spread with a PSA of 100 for many months now ‘WHY HASN'T IT SPREAD’ is the mystery” I think you should consider hormone therapy at the minimum and we’ll redo the test in a couple of months.
I agreed to his suggestion already after discussing the results of the test with the assigned oncologist in the oncology clinic. BTW I really like him as well mostly because he was a great listener and he was aware of my fear of Lupron based on watching my Dad after he started Lupron injections. He suggested starting with a one month dose. In fact he ordered it while I was still talking with him; he called up to the Urology clinic to administer the one month dose. Turned out that the pharmacy didn’t have one month doses but it took over an hour to tell me I had to return for the shot once it was in house. Turns out that the message to notify me when it arrived fell thru the cracks of VA HEALTH CARE. It took well over a month before I was notified that it had arrived but there wasn’t an appointment open with my doc for three months and I had to make numerous calls for the VA to realize that the doc didn’t need to administer the shot. It was close to three months before I drove the 150 miles to get the shot which a nurse administered to the fatty part of my arm. By then my PSA reached 112.
They scheduled a retest of the PET/CAT scan which I was told by the same oncologist who approved the one month dose. He said your retest is almost the same as your first test so I recommend starting radiation. I asked about the type of radiation that seems to target the cancer only.
Meanwhile someone in the chain of command saw things differently and said that it was now in my bones.
Almost 4 months have passed and I have mostly been told erroneous info; like I have no prostate.
Meanwhile after 3 one month doses of Lupron, my PSA went from 112 to 15 seemingly Delighting everyone who has seen the 97 point drop. But I was also told by the doc who said I can rest assured that “ this cancer will be the death of you “ that I am not a Candidate for radiation! That makes no sense to me since the first oncologist wanted to target the cancer in the prostate.
This brings me back to the furst news of cancer " the size of a dime " in my Prostate.
i dont know who to believe. I've been to two very well respected cancer, hospitals, and the VA each one has a different take on what I should do making me even more confused.
Sorry for the Length of this post.
I'd like to hear what the people here in the Mayo Clinic connect form have to say maybe I can get some better advice than what I've been getting from the so-called professionals
Thanks again for replying!

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I really like your urologist. He definitely has the care of his patients in mind.

You are now at a stage where radiation is really the normal treatment. The cancer has spread past the prostate, and in that case they prefer to use radiation to get rid of everything.

Any doctor that tells you that this cancer is the death of you is incompetent. I know so many people that are five or 10 years past that promised date. There’s no way a doctor can tell you that prostate cancer is the reason you are going to die, unless you are totally soaked with cancer and your tests don’t show that..

I’ve heard from some people that taking a one month shot is better than a three month shot, But once you get about five or six months in, there’s really no difference. You might ask to switch to Orgovyx, A daily pill that works the same, but It does not have as many side effects for some people.

You, of course, could start using the estradiol patch. The patch study showed that it was just as effective as ADT, but causes Many fewer side effects

The fact that your PSA only dropped to 15 after four months is a concern. Within six months, it’s supposed to drop to < .1. If it doesn’t, then your cancer may already be castrate resistant.

They frequently have a patient on a second drug soon, if the PSA doesn’t drop to undetectable.. Zytiga or One of the lutamides is prescribed. If your PSA does not continue to drop, ask your doctor about this.

Have a talk with your oncologist. Bring up the issues I’ve addressed here and ask with their solution is to the problems.

Did somebody go out and find your prostate and put it back in? 😀😒

REPLY

WOW! Thanks to everyone who contributed here.
I want to reread all of them and likely ask more questions and contribute more new information.
I’m wondering if I need to look at other forums to use for questions and feedback?

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I have a contract to finish before 5 pm.

I have much to ask

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Jeff,
As mentioned earlier: the read of the PET/CAT scan seems to be up to interpretation and no one explained exactly what has one doctor telling me that the scan there’s not much dif between the 1st and 2nd scan and the shadow areas can be spot treated the other doc said I’m no longer a candidate for radiation “ only if you’re in pain. I’ve had no new definable “ pain “ just the same old arthritis and degenerative disc pain. I actually thought that my records got mixed up with a different patient. I’d like a different facility to review them.
And most of the nurses and doctors reacted like a 97 point drop in PSA after two one month shots of Lupron. You think that it’s not enough. They added prednisone and Abiraterone to my daily meds. As mentioned I feel really good walking 4 miles a day and would increase the mileage, but my shins tell me no not yet.

More later

REPLY
Profile picture for olman @olman

Jeff,
As mentioned earlier: the read of the PET/CAT scan seems to be up to interpretation and no one explained exactly what has one doctor telling me that the scan there’s not much dif between the 1st and 2nd scan and the shadow areas can be spot treated the other doc said I’m no longer a candidate for radiation “ only if you’re in pain. I’ve had no new definable “ pain “ just the same old arthritis and degenerative disc pain. I actually thought that my records got mixed up with a different patient. I’d like a different facility to review them.
And most of the nurses and doctors reacted like a 97 point drop in PSA after two one month shots of Lupron. You think that it’s not enough. They added prednisone and Abiraterone to my daily meds. As mentioned I feel really good walking 4 miles a day and would increase the mileage, but my shins tell me no not yet.

More later

Jump to this post

Great to hear you’re feeling good even after starting abiraterone. Some people have a real problem with it with fatigue.

I’ve never had that problem with eight years on ADT. I just got back from the gym and I’m going to walk on the track for a while.

Good to hear your energy is still up. Abbie will bring your PSA down to undetectable because it brings your testosterone down to below five. Tends to bring on more hot flashes and fatigue. I’m working with one guy now that couldn’t take it after a year. He had to get off Abbie because of the fatigue. He even moved up to 10 mg of prednisone, which helps fatigue, but it wasn’t enough for him.

Make sure you are on a bone strengthener. It really is essential while On ADT. I saw a bone doctor in one of the conferences about six months ago and he discussed the fact that every person on ADT should have a bone strengthener. I was on Fosamax for about six years. It’s pretty easy to take. I’m on Zometa now.

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Great info Jeff! Allow me to share a few things that I learned from watching my Dad on Lupron.
Dad’s cancer was detected when he was 70 yo. I was detected at the same age. His doctor want to physically cut his manhood off. That was his last visit to that doc. The year was 1992. He started taking Saw Palmetto pills and seeing a urologist who did Prostate massages. I don’t recall the history of his PSA. That said his Doc told him about “ a new treatment “ called Lupron. He agreed to take it and there were changes in his PSA Immediately! That said no one mentioned to him anything about calcium supplements. His posture started changing rapidly and on the day he got his Lupron shot it was amazing to see a different man walk out before the shot and the man who walked after the shot. The fatigue and what I called Apathy factor changed his personality ( no one has mention any of these same possible side effects to me at all. I told my docs that I didn’t want to go thru what my Dad went thru. He passed away in 2014 at the age of 92 and after deciding that he was ready to die; “ I’ve lived a good life
. I survived a Nazi OW camp for nine months. I have a great family. I had a great life and I’m ready to go. He stopped taking Lupron. My mother wanted him to continue, but he hated the way he felt, and he hated what it was doing into his body.
I happened to be going to his doc and although uncomfortable as ($&@“ I think the prostrate massage helped now to just ask for one makes docs and staff look at me like I’m a sex pervert and have even suggested going to a sex worker. I’m getting off the main part of what I wanted to tell you about a drug that I was taking and asked the doc if he would RX it for Dad it’s called Provigil. He agreed and it worked well for the fatigue factor ( I’m also taking it now; asked for by me) it really works well for the tiredness and works fairly well for the apathy.
Dad eventually stopped taking because his choice was to sleep most of the day away while watching ( eyes closed ) Two and a Half men the calcium drain had this powerful man all bent over struggling to walk so he didn’t want to be stimulated to be awake during the normal waking hours. It was sad to see him suffer so I’m trying to learn from watching him.
But as mentioned I’ve gotten horrible advice from most doctors at the VA I’m taking what I think will help prevent the calcium depletion; a good tasting liquid and vitamin pills from the drug store not one of the doctors mention any of the pills that you mentioned. Which ones should I ask my oncology pharmacist to RX for me?
And I’d like to recommend Provigil or Nuvigil for fatigue. Strangely enough it helps me sleep when I go to bed around 11 pm. My bathroom trips are down to 1 or two occasionally more depending on what I consume during the day including a glass of wine on occasion.
I’d love to find a support group that’s got member similar to what we have here. Sadly the wrong group can have horrible consequences. One group I can to in Florida had 15 members all who had prostatectomies the leader of the group was strongly suggesting that I have mine removed. I stopped going to that group as I noticed that they all had complaints . The only man with do complaints was a 92 yo Jewish man who wanted me to play golf with him. I would have if I played golf which I never got into.
I do want to know about calcium meds and anything else that will keep me alive at least as long as my Dad that would mean 13 more years
Have you any knowledge about the prostate massage?
Thanks for educating me!
Much appreciated!

REPLY

Lupron takes 2-4 weeks to work and the race to the bottom can depend on your PSA at start. Some experience hot flashes, brain fog, loss of energy, head aches, depression, trouble sleeping and anemia. Exercise helps just about all of those symptoms. I went anemic on Lupron and switched to Ogorovy after 3 months and my blood numbers improved to normal after 3 months. 9 days afterwards the fog lifted and I felt great. Of course I immediately went out and rode hard on my mountain bike and was gutted the next day lol. Takes time to recoup from ADT.

REPLY
Profile picture for olman @olman

Great info Jeff! Allow me to share a few things that I learned from watching my Dad on Lupron.
Dad’s cancer was detected when he was 70 yo. I was detected at the same age. His doctor want to physically cut his manhood off. That was his last visit to that doc. The year was 1992. He started taking Saw Palmetto pills and seeing a urologist who did Prostate massages. I don’t recall the history of his PSA. That said his Doc told him about “ a new treatment “ called Lupron. He agreed to take it and there were changes in his PSA Immediately! That said no one mentioned to him anything about calcium supplements. His posture started changing rapidly and on the day he got his Lupron shot it was amazing to see a different man walk out before the shot and the man who walked after the shot. The fatigue and what I called Apathy factor changed his personality ( no one has mention any of these same possible side effects to me at all. I told my docs that I didn’t want to go thru what my Dad went thru. He passed away in 2014 at the age of 92 and after deciding that he was ready to die; “ I’ve lived a good life
. I survived a Nazi OW camp for nine months. I have a great family. I had a great life and I’m ready to go. He stopped taking Lupron. My mother wanted him to continue, but he hated the way he felt, and he hated what it was doing into his body.
I happened to be going to his doc and although uncomfortable as ($&@“ I think the prostrate massage helped now to just ask for one makes docs and staff look at me like I’m a sex pervert and have even suggested going to a sex worker. I’m getting off the main part of what I wanted to tell you about a drug that I was taking and asked the doc if he would RX it for Dad it’s called Provigil. He agreed and it worked well for the fatigue factor ( I’m also taking it now; asked for by me) it really works well for the tiredness and works fairly well for the apathy.
Dad eventually stopped taking because his choice was to sleep most of the day away while watching ( eyes closed ) Two and a Half men the calcium drain had this powerful man all bent over struggling to walk so he didn’t want to be stimulated to be awake during the normal waking hours. It was sad to see him suffer so I’m trying to learn from watching him.
But as mentioned I’ve gotten horrible advice from most doctors at the VA I’m taking what I think will help prevent the calcium depletion; a good tasting liquid and vitamin pills from the drug store not one of the doctors mention any of the pills that you mentioned. Which ones should I ask my oncology pharmacist to RX for me?
And I’d like to recommend Provigil or Nuvigil for fatigue. Strangely enough it helps me sleep when I go to bed around 11 pm. My bathroom trips are down to 1 or two occasionally more depending on what I consume during the day including a glass of wine on occasion.
I’d love to find a support group that’s got member similar to what we have here. Sadly the wrong group can have horrible consequences. One group I can to in Florida had 15 members all who had prostatectomies the leader of the group was strongly suggesting that I have mine removed. I stopped going to that group as I noticed that they all had complaints . The only man with do complaints was a 92 yo Jewish man who wanted me to play golf with him. I would have if I played golf which I never got into.
I do want to know about calcium meds and anything else that will keep me alive at least as long as my Dad that would mean 13 more years
Have you any knowledge about the prostate massage?
Thanks for educating me!
Much appreciated!

Jump to this post

My father also died of prostate cancer, At 88 his father lived in 98. I remember the day he told me Lupron stopped working. I had never heard of it and was unfamiliar with what was going on, But he told me his cancer was getting worse as a result. My father had his teeth ground down and crowned without Novocain, when I was a teenager. He’d come home to dinner after seeing the dentist and eat normally. The last few weeks before he died, he was on so much morphine that he couldn’t carry on a conversation. Didn’t realize that my father dying of prostate cancer would not be a good omen for me.

In my case, it turns out not only did I get prostate cancer genes from my father I got BRCA2 From my mother. As a result, I got prostate cancer at 62 whereas my older brother got prostate cancer at 75 because he doesn’t have BRCA2.

You’re having some issues with the VA and I may have some information that will help you get better treatment. Ancan.org Holds a veterans health online meeting every first and third Tuesday of the month. They have a whole bunch of military people from generals and Colonel’s to all ranks, helping people get the best care they can possibly get. They know how to go around the military to get outside doctors and have it paid for It might really make a difference for you to attend a meeting.

You’re talking about meeting people that have similarities to what you find in this group. I have been involved in the advanced prostate cancer weekly meetings at Ancan.org For about four years. There’s a group of people that meets there every week and most of the people have been there for a long time and are there to help and to get help. If you come to a meeting for the first time, they will give you close to a half an hour to discuss what’s going on with your case and what can be done about it. They’ve been helping people for 15 years and really know their stuff. It’s a large group, Between 35 and 50 people show up to every meeting.

There’s another group I meet with that’s similar in that people know each other, some for a long time and they’re really friendly in the group. They meet twice a month. I’ve been going to these meetings for about a year. It is call the Cancer support community https://www.cancersupportcommunity.org/. This is another place you might like to come to the meetings and learn a lot. You do need to get authorized ahead of time so you just have to call and they want to make sure you have prostate cancer.

REPLY
Profile picture for olman @olman

Thanks for the reply Jeff. Getting older has been most difficult as I become either wiser or more judgmental; not understanding how and why I’m so unfamiliar with the in’s and outs of this cancer.
When I was told to report to the oncology clinic and showed up, one of the nurses met with me to explain why I was transferred to the clinic from regular urology appointments. She went on: “ you’re here because we want to know why your PSA has been going up AFTER A Prostatectomy. “ She reminds me of the history: 6 months ago your PSA was 60, then a few months ago it rose to 100, then a couple of months after that it hit 112” I interrupted her to first say: “ I still have my prostate” She immediately replied: “ No you don’t. It says right here in your records that you prostate is missing “ ( strange choice of words, it would have made more sense to me is she gave me a date that it was removed ) She dives back into the records perhaps looking for that information. But she misinterpreted, I later found out; words to the effect that my “ pelvic floor was empty “ or something akin to that which were the words of someone in the process who read the so called definitive test which I’ve seen it mentioned here; which involves a PET and CAT SCAN done at the same time. I had that test conducted twice 3 months apart.
The first time it was ordered by my Urologist, who called me the minute he got the results, which was before I returned home after the test ( about 90 minutes after the test. I really like my urologist who was sincerely concerned that I hadn’t done anything since the cancer dx and warmed me that with a PSA OF 100 I very likely had the cancer Metastasize into my bones or other likely places that this cancer goes if not treated in some approved way ( hormone therapy and or radiation ) My doctor excitedly said I’m calling you about the results of you test which presents both positive news and a mystery. “ The cancer has not spread but that it hasn’t spread with a PSA of 100 for many months now ‘WHY HASN'T IT SPREAD’ is the mystery” I think you should consider hormone therapy at the minimum and we’ll redo the test in a couple of months.
I agreed to his suggestion already after discussing the results of the test with the assigned oncologist in the oncology clinic. BTW I really like him as well mostly because he was a great listener and he was aware of my fear of Lupron based on watching my Dad after he started Lupron injections. He suggested starting with a one month dose. In fact he ordered it while I was still talking with him; he called up to the Urology clinic to administer the one month dose. Turned out that the pharmacy didn’t have one month doses but it took over an hour to tell me I had to return for the shot once it was in house. Turns out that the message to notify me when it arrived fell thru the cracks of VA HEALTH CARE. It took well over a month before I was notified that it had arrived but there wasn’t an appointment open with my doc for three months and I had to make numerous calls for the VA to realize that the doc didn’t need to administer the shot. It was close to three months before I drove the 150 miles to get the shot which a nurse administered to the fatty part of my arm. By then my PSA reached 112.
They scheduled a retest of the PET/CAT scan which I was told by the same oncologist who approved the one month dose. He said your retest is almost the same as your first test so I recommend starting radiation. I asked about the type of radiation that seems to target the cancer only.
Meanwhile someone in the chain of command saw things differently and said that it was now in my bones.
Almost 4 months have passed and I have mostly been told erroneous info; like I have no prostate.
Meanwhile after 3 one month doses of Lupron, my PSA went from 112 to 15 seemingly Delighting everyone who has seen the 97 point drop. But I was also told by the doc who said I can rest assured that “ this cancer will be the death of you “ that I am not a Candidate for radiation! That makes no sense to me since the first oncologist wanted to target the cancer in the prostate.
This brings me back to the furst news of cancer " the size of a dime " in my Prostate.
i dont know who to believe. I've been to two very well respected cancer, hospitals, and the VA each one has a different take on what I should do making me even more confused.
Sorry for the Length of this post.
I'd like to hear what the people here in the Mayo Clinic connect form have to say maybe I can get some better advice than what I've been getting from the so-called professionals
Thanks again for replying!

Jump to this post

I'm stage 4, sadly, 4+3. I've been to the three best facilities for cancer in the country. I'm being treated at Sloan Kettering and got second opinions at Mayo and MD Anderson. They all gave me the same information on the treatment which is good. The end goal was to get radiation for the prostate and the hip where the cancer has gone.

Interesting is that my PSA was only 3.6 after being 1.7ish and that's what prompted the MRI. Less than a PSA of 4 is usually a wait and see thing. I was stage 4 at that point.

With me, before Lupron and abiraterone, they gave me an oral medication to shut the testosterone receptors of the prostate cancer down. Lupron will raise the testosterone levels in your body initially and that's why they gave me the first medicine, can't remember the name but starts with Bi ( I can find it if you want me to). You don't want to be feeding the cancer if you can help it.
I will be on Lupron and Abiraterone for a total of two years and if I make it that far, they will take me off of those and wait and see.

I'm currently completing my SBRT radiation treatment with 5 sessions for the prostate and three for the hip. The radiation isn't real bad. The first session of the prostate, I felt a burning down there and after subsequent sessions, Aleve seemed to fix things. The hip, I haven't felt anything after two sessions. The prostate sessions lasted about four-five songs on the music and the hip was two or three songs for each session.

If in doubt, or for the hell of it, go to the best place you can find to get a second or third opinion. For me, each opinion cost Medicare about $900 and i had to pay travel expenses.
Why did i get second and third opinions, because I didn't want to be on my death bed wishing I should have done more.

BTW, the second opinion idea came from people here in this web site and it was the best thing I could have done. Takes away all doubt of the treatment I was receiving.

Good luck and don't assume the doctors know everything,

REPLY
Profile picture for bonanzaman @bonanzaman

I'm stage 4, sadly, 4+3. I've been to the three best facilities for cancer in the country. I'm being treated at Sloan Kettering and got second opinions at Mayo and MD Anderson. They all gave me the same information on the treatment which is good. The end goal was to get radiation for the prostate and the hip where the cancer has gone.

Interesting is that my PSA was only 3.6 after being 1.7ish and that's what prompted the MRI. Less than a PSA of 4 is usually a wait and see thing. I was stage 4 at that point.

With me, before Lupron and abiraterone, they gave me an oral medication to shut the testosterone receptors of the prostate cancer down. Lupron will raise the testosterone levels in your body initially and that's why they gave me the first medicine, can't remember the name but starts with Bi ( I can find it if you want me to). You don't want to be feeding the cancer if you can help it.
I will be on Lupron and Abiraterone for a total of two years and if I make it that far, they will take me off of those and wait and see.

I'm currently completing my SBRT radiation treatment with 5 sessions for the prostate and three for the hip. The radiation isn't real bad. The first session of the prostate, I felt a burning down there and after subsequent sessions, Aleve seemed to fix things. The hip, I haven't felt anything after two sessions. The prostate sessions lasted about four-five songs on the music and the hip was two or three songs for each session.

If in doubt, or for the hell of it, go to the best place you can find to get a second or third opinion. For me, each opinion cost Medicare about $900 and i had to pay travel expenses.
Why did i get second and third opinions, because I didn't want to be on my death bed wishing I should have done more.

BTW, the second opinion idea came from people here in this web site and it was the best thing I could have done. Takes away all doubt of the treatment I was receiving.

Good luck and don't assume the doctors know everything,

Jump to this post

That first pill you took was Biclutamide (Casodex) another one of the lutamides.😀

I actually took Biclutamide when I became castrate resistant. My oncologist had me take it for a year and it kept my PSA from rising much, Went on abiraterone after the year..

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