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What to Expect After Lupron Shots Stop - Gleason Nine

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Posted 5/7/2018 3:34 AM (GMT 0)
Hello Everyone,

I have had been very blessed during my two year stint of Lupron shots in that my PSA went to non-detectable. As one can see from my signature data, I have aggressive prostate cancer. The side effects of the Lupron are everything everybody writes about, but I am glad I have taken the treatments.

Is it normal to see a bounce in PSA after going off Lupron with Gleason Nine cancer and if so, what is the normal time one see a bounce?

Please don't worry about hurting my feelings. Based on how much cancer they found when they removed my prostate and what they found in the original biopsy, common sense tells me I should see a bounce in count since Lupron's role is to suppress the cancer rather than cure it.

If any of you are Gleason nines out there, I would love to hear about your experiences. If you prefer, email me personally. Again, do not worry about being candid.

Thanks and I appreciate all your responses.

Bob
Posted 5/7/2018 3:59 AM (GMT 0)
You should not really see a bounce as your testosterone comes back up if the treatment has been curative. If it wasn't curative, your PSA will rise, not bounce.
Posted 5/7/2018 4:12 AM (GMT 0)
Thanks Tall Allen. You really help a lot of people with your knowledge. My first six month post Lupron treatment PSA blood draw will be in June. Hope all is going well with you as well.

Bob
Posted 5/7/2018 4:38 AM (GMT 0)
I'll just second what TA said and add the real question will be was this curative or will you have to go back on HT at some point. The waiting for results is likely going to be a bit of a worry generator as so much is riding on that result.

about all you can do now is watch and wait for the T levels to rise. Hopefully you get some relief from the HT - hopefully forever, but it's a big guess.

Andrew
Posted 5/7/2018 5:18 AM (GMT 0)
I don't have much to add to what the others have said. Nobody can tell you what your PSA will do. If the radiation and the hormones cleaned up all the cancer that remained after your surgery then your PSA will remain very low for a long time. This is certainly possible. Also a possibility is that you have significant metastases outside the area treated by the radiation and the Lupron has been holding down your PSA. If that is the case then your PSA may start to climb quickly as soon as the Lupron wears off. There's a third case between the other two where you have tiny metastases that aren't large enough to elevate your PSA but will gradually grow. That would show up as a very slow PSA growth.

Obviously the first possibility -- the one where you are cured -- is the best one but even if one of the others applies the disease can usually be managed, even for Gleason 9 guys.
Posted 5/7/2018 1:23 PM (GMT 0)
Good news on the success with Lupron, and thanks for the update.

Not much to add to what the other wise folks here have said. I would suggest checking your testosterone along with the PSA as you recover from the hormone therapy. Doctors don't always think of doing that, but should if you suggest it.

People vary tremendously in how fast the testosterone recovers, and that will somewhat pace the PSA. Having both numbers should help you and your doctor better understand any PSA patterns you see as the hormone therapy "releases". Ideally, your testosterone will recover to a nice normal range while the PSA stays low; that's the sweet spot you're aiming for!
Posted 5/7/2018 1:43 PM (GMT 0)
Good Morning Bob, we too are in the exact same boat as you are G9, aggressive, pos pathology report post op yada yada Lupron etc and wondering exactly the same thing ! I just wanted to reach out and say best of health and well wishes to you I totally understand what you are saying what the heck is the PSA going to do when we stop the HT ? I ll let the guys with all the experience reply with words of wisdom and read their responses but you are nt alone Warm Regards JK
Posted 5/7/2018 2:28 PM (GMT 0)
Bob, you've asked the $64,000 question. What indeed will happen? My pathology was not nearly as bad as yours, but I'm sure there are many, MANY of us here who are asking the same thing. We (you and I) have been fortunate so far that the PSA tests while on ADT have been nearly undetectable, and what happens next will determine which direction the rest of our lives will take.

You know how difficult the journey has been just to get this far. Every cancer survivor, if nothing else, spends the rest of their lives worried about a possible recurrence. We are not alone in this. But many (and I do know a few) had RP/RT combo 10-20 years ago, even before HT became common practice, and their PSA stabilized at undetectable. Let's just keep our fingers crossed and hope the nightmare is nearly over.
Posted 5/7/2018 3:08 PM (GMT 0)
I can't add much here except that Redwings suggestion to test "T" level along with PSA is a good idea often overlooked. The effect of those Lupron shots can take a while to wear off, depending on your age, a year or more....Best of luck to you Bob....
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