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Is there REALLY a monster in the closet?

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Posted 5/18/2014 3:39 AM (GMT 0)
I feel like a little kid holding the closet door closed - he's convinced that there's a monster in there, but is afraid to look inside to see.

With undetectable PSA, when does it make sense to go off continuous ADT and try intermittent? Eighteen months ago, this question was not even on the radar for me, as I thought I was in a downward spiral.

I was diagnosed in September 2011, G7, PSA 52, T3bN1M0. Started on Lupron immediately. IMRT Tomotherapy 3/12 to 5/12, 82 Gy. After radiation, PSA fell to 0.01 on 8/14/12, then started to rise incrementally. By Feb 2012, psa was up to 7.9. That's when we found a single metastatic lesion at L2. Radiation to met 30.5 Gy, completed 4/12. After this spot radiation, PSA dropped to <0.02 by 5/6/13, and remained undetectable. Since I met the requirements, I was able to receive Provenge treatment, completed 4/4/14. PSA is still undetectable after 12 months.

I was told that, for me, the best outcome with high-risk PC was IMRT with 3 years ADT. I will reach the 3 year mark in September. I feel that the vertebral lesion was a more aggressive, androgen independent strain, with the rapid doubling time (2 weeks!) and progression while on continuous ADT. Since the spot radiation 12 months ago, there has been no PSA rise, which to me indicates that there is a fair chance that my excellent RO was able to completely knock it out . After 12 months, if there was a remnant of this fast-growing colony left, we should have seen it by now.

But back to the basic question - Originally, RO stated that we would continue ADT for 2-3 years, then stop and see where PSA leveled out. I think that, with all the positive indications, this could work. I'd restart if PSA went above an agreed-upon setpoint (? 4-4.5). Haven't spoken to my Radiation oncologist yet, but Medical oncologist wants me to wait another year, 2 years from the second radiation. But I'm not sure I can wait that long - "Lupron Brain" seems to get worse as time goes on!

Does anyone have any experience to share, or comments?

Bob
(posted on another forum, also)
Posted 5/18/2014 3:43 AM (GMT 0)
Bob -- I feel for you man. I think advice in your case is best left to your doctors. take care.

ed
Posted 5/18/2014 5:14 AM (GMT 0)
That's a tough one. I wouldn't even start to answer that one, except to say you should ask the RO before you decide.

I know you hate the thought of another year, but unless you've got a good reason not to, I'd follow the doc's advice.

Andrew
Posted 5/18/2014 3:58 PM (GMT 0)
I'm going to weigh in on this because my treatment protocol was similar to yours, although my initial numbers at Dx might have been better.

I also had IMRT (9 weeks at 81 Gy, you had 82 Gy) along with a Lupron pattern similar to yours. In my case, following treatment, my PSA also went to undetectable, but in my case has remained there (see my signature below).

Your case becomes different since you said they found the "single metastatic lesion at L2" which was then apparently treated successfully with the spot radiation. That's great. Then 2-3 years additional Lupron were added. Your question is about whether you can eliminate the final year of Lupron, and be done with its side effects, but still be okay in your overall treatment.

Another factor: you didn't mention your Gleason score, but you did say in your post that your case was "high risk" and that you were taking Provenge. That being the case, I would assume your G score is at least 7 and more likely 8 or 9.

It would seem to me that you have reached the "whack-a-mole" stage of your treatment, looking for and "whacking" any distant lesions that may arise (buy hopefully won't).

That being the case, if it were my decision, I would tough it out with the Lupron. I know you can do this because you did it with the IMRT. Remember the patience you probably had to find in yourself when you "toughed it out" with the IMRT, especially near the end? You were able to do it. You know from your own experience that getting through IMRT was largely just a matter of patience.

Let it be so with the Lupron. If you've got this beast down, finish it off now, and don't give it a possible break by letting up on the treatment plan your doctor thinks is good.

I think this is especially the way to go if your case is "high risk" as you originally mentioned.
Posted 5/18/2014 5:35 PM (GMT 0)
I don't have an answer, just some things to consider. To some extent, it seems that higher doses of radiation can substitute for longer time on ADT. The radiation to your bone met was on the low side, so a longer course of ADT may be needed. The studies that found that 18 months of ADT was as good as 3 years did not include men with metastases.

- Allen
Posted 5/18/2014 9:46 PM (GMT 0)
Thanks, all -

F8 - thanks for the thoughts!

81GyGuy - Gleason was a mixed 7 - (3+4 on R, 4+3 on L). And you are correct - I also refer to this as the 'wack-a-mole' stage. So far, nothing has popped up in the last 13 months, but I'm ready if it does. You may be correct, that I should just 'tough it out' and make sure this beast is finished. Guess I'm feeling whiny at the moment (things are going too well!).

Tall Allen - thanks for the info. As of September, I will have been on continuous ADT for 3 years, including the time for both radiation treatments. 6 months ago, when my wife asked my MO how long I'd have to be on ADT, he said 'forever'. Now, after I asked again, he says 1 more year - big change! Maybe it'll get shorter when I ask him again in a few months!

Bob
Posted 5/19/2014 1:09 AM (GMT 0)
Can't advise you directly, different circumstances with my case, but I wish you t he best as you continue to go forward.

David
Posted 8/23/2014 10:48 PM (GMT 0)
Still seeing PSA at <0.02 (16 months so far), so I'm planning to have another serious discussion with my Med Onc at the end of September, which will be a total of 3 years on Lupron, and will be 17 months of undetectable PSA. I really want to try intermittent ADT at that point.
Bob
Posted 8/23/2014 11:37 PM (GMT 0)
Bob,

There are some folks here whom have had great success with intermittent HT, and I'm sure they will chime in shortly (you may very well be ready for a vacation). I know there are some drugs you might consider taking while on an HT vacation, but don't know the specifics. I hope you get some great inputs to discuss with your Onc!

Congrats on your successes thus far! My best to you!
Posted 8/23/2014 11:48 PM (GMT 0)
I'm at 15 months on ADT2 and the side effects are fairly tolerable but relentless. Hot flashes and fatigue, mainly. The response has been great so far, still undetectable PSA, but with the same concern about future risk. My 5+4 G9, stage 3, is a very high risk scenario. So, it's great to have such a good PSA response but the risk of recurrence is really high.

They told me ADT for 2 years at first, but at one of my follow up appointments both the UO and the RO were saying 3 years on ADT would be recommended in my case. Whatever, in for a penny in for a pound. I'll take the side effects for the best shot at wiping out the beast (I'm optimistic).

Next PSA check is in November, and I'm fully expecting it to still be undetectable. Doesn't matter, I'm on board for the 3 year tour no matter what the side effects are along the way. I'd hate to quit it early due to irritation with side effects, then find myself in trouble 5 or 6 years out wondering if I should have stayed on it.

It's not easy either way, really.
Posted 8/24/2014 1:07 AM (GMT 0)
Redwing,
I was told the same thing when I started, that I'd be looking at 24 months of ADT with my IMRT, then we'd stop the Lupron and see where the PSA leveled out. Over the next 6 months, this changed to 36 months, but I was OK with that - just happy to have a good chance of staying alive. The vertebral met really threw everyone for a loop, but after the spot radiation (STRONG radiation!), PSA dropped back to undetectable almost immediately. At this point, there are no studies that give longer survival to IMRT and ADT exceeding 36 months. But, if the beast has not completely quieted down, extending the program only seems logical.
I'll post again after my medonc meeting next month.

Any advice from those on Intermittent ADT? How's it working for you?

Bob
Posted 8/24/2014 3:41 AM (GMT 0)
Kayak,

You and my husband are very similar with the exception that you had a bone met after IMRT and he metastasis to his bladder and lymph nodes before IMRT

He reaches his 3rd year on ADT (Lupron, Casodex, Zytiga) in September as well. All of his medical oncologist (MD. Anderson & Prostate Oncology Specialist) and his RO have told him that after three years, they feel the risk outweighs the benefits.

So, while he is willing to go another 6 months for more Zytiga time since it was added later, they aren't giving him a choice.

At diagnosis, they thought he would fail ADT within 18 months. Thankfully, he hasn't.

Now we are curious (anxious) to see what his PSA will do once all of this stuff is out of his system.

I'll be watching this topic closely.

Thanks for posting it!
Posted 8/24/2014 4:55 PM (GMT 0)
Ms WW,
Similar does not do it justice - we appear to be on parallel tracks! I'm pleased to see that your husband has achieved such a low nadir, and has maintained it for so long! Has there been any current imaging for the bladder & Lymph node mets?

So, I'm curious - are you saying that you are also looking to trying intermittent ADT? Or, have I misread this? With the mets, it sounds like the Drs. are concerned with starting them up again with ADT.

I discussed, with my MedOnc, if there was a great risk of starting up any micro mets, where we would not be able to tamp things back down again. He said that, if the restart trigger was reasonable, that there was not much chance of starting an uncontrollable cancer increase, but it would be brought right back down with Lupron again.

I may be an oddity in that I was diagnosed as Metastatic castrate-resistant due to the rapid growth of my vertebral met while I was on continuous Lupron. But, the spot radiation seems to have knocked this agressive cancer colony out completely, since there has been no rise in PSA for the last 16 months - it's as if I'm ADT sensitive again. But I retain the diagnosis (which qualified me for Provenge)!

Let me know what you're planning!

Bob
Posted 8/25/2014 4:54 AM (GMT 0)
Actually, they are wanting to remove him from all meds. Lupron, Casodex, and Zytiga.

My husband is hoping to be able to stay on Zytiga a little bit long since it was added to the mix about two years ago. I think he want to give all meds the same time period. Lots will be up for discussion with that but the medical oncologist may totally disagree due to their belief that at this point the risk outweighs the benefits.

He gets imaged every 6 months. Last imaging 5 months ago indicated that the mets had moved away from the bladder and all but one lymph node had mostly resolved.

You case is interesting with the mets while on ADT, but once zapped, you're technically no longer hormone resistant. It does make you wonder about the variances of the cell types.

I think my husband's oncologists are still scratching their heads about him making it three years on ADT without going refractory/resistant. At diagnosis, they gave 18 months as a general time for him to fail ADT.

As to what we are planning... probably a trip to Tahiti! (grin)
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