Hi everyone, I am a 56 year old male with bone mets in hip and femur. (Gleason - 8, 11 of 12 cores cancerous). I went on Casodex two weeks prior to my 3 month Lupron injection almost three months ago. After just over a month, my PSA level dropped from 8.8 to 1.0, and my testosterone level dropped to less than 3 ng. Very fortunately, I became eligible for a clinical trial; therefore, had to have complete blood work completed this week (one week before my next 3 month Lupron injection). I just received the test results and, since my last blood test in early May, my PSA dropped to 0.125 (from 1.0), but my Testosterone rose from less than 3ng to 19ng. I am wondering if any of you have any experience with this. Of course, my paranoia is that I am becoming ADT resistant after only 3 months since the testosterone level is rising....and that the PSA level is sure to follow. On the other hand, I am hoping that maybe the fluctuation of 16 or so ng may be normal and I am still within a safe range.....or, maybe since it is time for my next Lupron injection next week, the effects of the 3 month Lupron injection are starting to wear off, and this is just normal behavior for the testosterone level. I just wanted to mention again that I do take 50 mg of Casodex daily in addition to the 3 month Lupron injections. I haven't seen this question addressed, cant find it with searches; therefore, would so much appreciate it if any of you with experience in this category would be able to provide any feedback. Thank you all so very much again!
Testosterone level rising toward end ... - Advanced Prostate...
Testosterone level rising toward end of Lupron cycle
Testosterone levels below 20 are good and if you read the information provided by the company that makes Lupron, they only guarantee T levels below 50. I would keep an eye on it, but you are OK. at 19 for sure. The only way to guarantee consistent T levels below 20 is to have an orchiectomy and that's not something many people want to do because it's permanent. With surgery, you could expect consistent testosterone levels around 15. If you are becoming resistant, it's not because your T level is 19.
I wouldn't worry about it at this point, but do keep an eye on your T and PSA levels and only deal with what you have to and only when it happens. That's really the only way you can do this and still maintain your sanity.
Just in case you didn't already know, Casodex doesn't lower your testosterone level, it blocks the androgen receptors on the Pca.
Gregg, thank you for the email and the reassurance, and agree, I will definitely not get worked up about what may happen....and for that matter, even what is happening now. Thank you again. I appreciate it.
There's definitely a bit of learning curve on how to deal with these things mentally and emotionally. The whole thing is overwhelming and there are so many variables. You can spend a lot of time thinking about every turn the road might take. But that only robs you of the quality of life you have in the here and now, and that's really all we have. We have to learn not to let that get taken away from us. I try to only think about things that I can take positive steps to do something about it.
Thank you Gregg57. I am very much with you in your thoughts and really appreciate your replies. I feel really good from a physical and mental standpoint and am doing everything I can to kick this things butt. I think, what I am wondering, purely from a clinical perspective is, does anyone have any data on whether testosterone, which is rising since my last Lupron injection,will be followed by a rising PSA score, and secondly, , does this phenomenon occur toward the end of the 3 month Lupron cycle? Thank you again for taking the time to reply. I really appreciate it!
I wouldn't expect that a PSA increase would follow a testosterone increase as long as you stay at castrate levels. My understanding is that the Lupron shot would actually last for 4 months before testosterone levels start slowly rising. So taking it at 3 month intervals should give you some overlap. Remember though, Lupron does not guarantee anything below 50, and 50 is not considered low enough. All of us on ADT have to keep an eye on our testosterone levels. Some people have to switch to something else if it doesn't get their T levels low enough. My opinion is that testosterone levels should be checked monthly. I think you are right to be concerned about testosterone levels, especially in light of the fact that research has shown that T levels are a predictor of the length of time to castrate resistant PCa. I am considering an orchiectomy for this reason since I'll be on Lupron for the rest of my life anyway. With surgery, you can get consistent levels of 15 in a matter of hours after the procedure.
Here's an article on the subject of Testosterone levels and time to castrate resistant PCa.
ncbi.nlm.nih.gov/pmc/articl...
Hey guy! I did the orchiectomy 9-1-16 ..One time blue cross didn't get our payment somehow..It was time for my Lupron shot..And we weren't cover.Curiosty showed me the cost of a lupron 3 month dose is $6.700 . Who could afford it? Straitened out my insurance and they paid.Besides APC I've been lucky enough not be on others drugs.After ADT you are already casterated anyway.My balls were tiny after RT & ADT.Those two guys just got in my way anyway. I originally mistakingly thought that no shots meant that the symptoms would diminish.Not the case.Either way the "casteration" is what drives the side effects..For me it was a no-brainer..I was already castrated chemically so ???Why take the shots for life??Orchiectomy is permanent partial fix for A.P.C.?. Strangely for me it has been some What of a mental relief, once you have made the decision to do it. I'm sure that my insurer is happy not to pay for ADT...Good luck in your decisions....
I can sure see some good reasons to have an orchiectomy. As you say, you are already castrated chemically so there is really no difference. I'll be on Lupron for life anyway so why not? The side effects are the same, but you no longer have to go in and get the shots. There's the cost of the shots and also going in for one more thing. I want as few trips in to the hospital as possible for mental health. And there's the pain of the shots. My first one wasn't bad, but the last one hurt like hell for a couple days. Not looking forward to the next one. As far as testosterone levels, an orchiectomy provides the lowest and most consistent T levels so it's a better solution for fighting the cancer too. There are probably guys that have had a reduction in PSA when they went from Lupron to surgery. Once I'm done with chemo, I'm going to see about doing it.
It's a taboo in our society.But my prostate cancer specialist from the U of Az. Now in the mayo clinic in Scottsdale is a seik from India and in the 3rd world maybe it's accepted better or a cost effective solution to the same problem.My wife backed me. My results thus far are good.The shots suck.I feel more level compared to some of the ups and downs as the shots seamed more powerful at first a little and near the end they seamed to weaken and I'd feel less side effects..I've had some depression in my life,after the surgery I had a couple months of telling myself that like the bull casterated and put out to pasture that I was through and not worthy to walk this earth. Make room for someone else..But I came out of it..Havnt heard anyone else on this site admitting orchiectomy.Maybe I'm the only one????
My onco suggested that I waited one yr before doing it. Not to give you tmi but it did not stop me from errections ..my onco told me that RT on top of ADT wwas the nail in my coffin for errections..He was wrong.I m better after the surgery and I get wood morning and night....I try to explain the shit that I go through to my friends or brothers but it seems unless you re there they can't fathom the depth of totall hormone dep.. For a guy.Keep you sanity and you'll be ahead of the game..
Yes Sir! Gregg 57, you are on point, as usual.Thanks !
It is important to note that the 1 month shot is really a 4 week shot (28days) and the 3 month shot is a 12 week shot (84 Days) and that is different from 3 months.I do believe the 19 still qualifies as a acceptable T score as it was shown long ago anything under 32 is good, It would indicate in my opinion that the shot was starting to wear off. It is good you are checking the T because if is not lowering to an acceptable range there are things that can be done to get it in the acceptable range. If it stops working the T will be castrate and the psa will increase, lets hope that is a very long time away for you.
Thank you Dan for the very good detail. I do think it is ironic that my PSA improved, but the T went up. Like you, I just have that feeling it is due to being at the end of my cycle. it will be interesting to see how the pattern is established. Thank you very much again for your reply and the knowledge. i am very definitely new at this game!
I like the name Sticking around1. I suspect your psa will go even lower. There was a study showing increased survival by adding 6 rounds of docetaxol chemo to initial lupron early, I also saw a report from ASCO this year that adding zytiga early has survival advantage, Might ask your MO about that. I myself am an 11 year dxed at stage 4 high Gleason and made it with various hormone manipulations such as Lupron , Nilandron, Casodex, xtandi and zytiga psa never went below 3
Thanks Dan, I tell you, you reply and what you have gone through for the duration is a pretty darn big inspiration. It just reinforces how incredibly important extreme mental toughness plays, maybe the larges role in winning this huge battle. Thank you. Also, thanks for the comment on my user name. For some reason, it was the very first thing that cam to mind! Thank you again!
11yrs, that's impressive, you've been thru the mill..Thanks for your truthfulness to us that are just beginning this ride..
Resistant means that your PSA is rising while being on Lupron. It does not mean that your T rises while on Lupron. You are confusing things.
What is the trial you are on.
I know a fellow who went on Lupron in 2003 after failing surgery and radiation. In 2006 his PSA began to rise. He is a big fellow, 6 feet 6 inches, 300+ pounds. Maybe the standard dose of Lupron wasn't enough for him? In any case, they measured his T level and found it was 86 ng/dl. They added Casodex to his regimen. Now, in 2017, 14 years after beginning ADT, his PSA is 0.10. He keeps chugging along, still on just Lupron and Casodex.
I think that you should continue monitoring testosterone along with PSA, but it looks to me like your treatment is highly effective and, hopefully, you're on your way to still lower PSA levels.
Best of luck.
Alan
Hi, you have to have a new concept of this disease, it is dealt with day by day. Constant monitoring, adjustments, ups- downs, med to med, procedure changes.
Its like a chess gamem, move, counter-move. Just besure and see at least 2 Drs. Like chess, there are several ways to treat PCa.
You'll be fine, even if we've got it from here on, we.have to get use to constant daily dealing with it. Be at peace with it .
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