Some of you know my story; RP on January 4th, IMRT starting June 1st just ended last week. 5 Firmagon shots going to Lupron on September 1st. Dr. Richard Lam of Prostate Oncologists in Marina del Ray absolutely wants me on Zytiga starting now for 12 months. Says it will increase likelihood of permanent remission from 40% to 55-60%. Dallas uro surgeon says don’t take it, keep it for “possibly later.” His take is that it doesn’t improve my odds enough to pull the trigger and expose Zytiga to any possible cancer cells. Lam and his associates say, “blast it now.”
I have 6 bottles of 60 each so am I “locked and loaded.” Zytiga/prednisolone for a year? Is it worth it? I have some heart issues but Lam says those can be monitored and Zytiga stopped if necessary. Cannot make myself pull the trigger and start.
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TEBozo
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So you are taking it adjuvant to salvage radiation? There really is no data yet, and none are expected from the Phase 2 trial for about a year. Where did Lam get his numbers from?
Tall Allen, you are right there is no study to show that with RP= IMRT+ ADT that adding Zytiga helps kill any micro cancer cells. However, Richard Lam, MD Director of Research and an oncologist ( one of 3) with Mark Scholz's group in Marina Del Ray, Prostate Oncology Specialists, have been giving it to men like me with my numbers for several years and according to Lam and his partner Turner, they have many men that are in "permanent remission." That is, of course where I want to be!
I know that this might be aggressive but even my RO at UTSW in Dallas is in favor of it.
Yes, I know that POS is doing that, but they have not published anything. Are they seeing more "permanent remissions" than they would see without the extra toxicity (i.e., is there a control group?) I am always skeptical of claims made verbally that are not backed up by a peer-reviewed publication. If what he is telling you is true, he should publish it.
You are operating in a near data-free zone, and with deep respect, repeated rephrasing of the question just can’t get you a good answer at this time. There are at least four trials looking at aspects of your query but none will report in a timeframe that will assist you, and it’s not clear to me that they will in any case address the issue your Dallas urologist is raising - that earlier Zytiga use may disadvantage you later. That’s hard to test, and of course doesn’t apply if the earlier use is the factor that gets you a cure (the trials are aimed at testing for a differential in “cure” rate).
I have huge sympathy for your position but you need to recognise the realities of the current state of knowledge and take your decision.
For what it’s worth, in a similar but slightly less challenging situation than yours (5 months undetectable post op and no nodes involved, plus negative PET PSMA scan) I opted for the Zytiga and am just into the 8th month. But that’s just my choice, made based on my evaluation of the risk/reward calculation and broad consultation - in the end, the choice is yours.
In your place, I would focus on the cost of regret rather than potential side effects (these can be monitored - it won’t “strike you down” overnight) and even more speculative possible lost future benefits through early exposure - but that’s my calculation,... you need to make yours.
The numbers Lam is quoting haven’t been published, as far as I am aware... did he cite any source or his own clinical experience to back these estimates up?
You have been worrying about this for months - I think it’s time to just make a decision.
Stuart, I am going for it. Monitoring BP and doing blood work every 3 weeks. I just CANNOT look back in 3-5 years and say that I wished that I was more aggressive and I do NOT want to treat this like a chronic disease for the rest of my life. Thanks for your thoughts-I mean it.
Well, congratulations on making what has clearly been a pretty fraught decision - I think it’s the right one, for whatever that’s worth.
My MO had me taking my BP at home regularly, with full blood work every couple of weeks at first - just to keep an eye on the liver. I have had several episodes of elevated liver numbers, but have been able to control these by eating a lot of salads and taking milk thistle capsules daily.... it’s just a case of giving the liver a bit of a hand with the level of toxicity it is dealing with.
I agree with the others. There is evidence that primary ADT increases your odds of a long term remission, but not for the adding Zytiga on top of it. Currently, there is only evidence to support early Zytiga along with primary ADT for men with metastatic disease. In my opinion, you are adding toxicity with no evidence to support it. I think it might be a long time before anyone can prove the benefits of adding Zytiga since the length of time for remission is already long in most cases.
I can see the logic, but I'm guessing these are small mets. Technically, you are considered non-metastatic if you can not see your mets with T99 bone scan and CT. So you are hormone sensitive, non-metastatic. As far as I know, Zytiga is not approved for that indication.
Guys, thanks for all of your thoughts. It is a very interesting dilemma. Seems I have too much information.
1. No RP+ ADT+ IMRT+ Zytiga/prednisolone studies completed yet. Only intact prostates.
2. Gallium PSMA PET at UCLA gave RT at University of Texas Southwestern a really clear picture of what to radiate.
3. Uro surgeon NOT a/my Oncologist but his male nurse is source of Lupron shot therefore, when ,I see/speak to him he says "hold off, not standard of care." I think HE believes its 50/50 I'm permanently out of woods.
4. Oncologist Brad Hirsch's Texas Oncology take on the Zytiga/prednisolone is it wont give me bang for buck. Weird thing he said was he'd take it "if it were free." He's a Duke educated person. Go figure.
5. Richard Lam MD of Prostate Oncology Specialists, Marina del Rey and his cohorts say, take it. 100% certain. Mark Turner MD and Mark Scholz are his partners. Kill it now. In reases cure potential by 15-20%. Up from 50%-50%
6. Blood pressure controlled with Carvedilol and Losartan, I have a slightly increased aorta that cardiologist says has only increased slightly since 2012.
7. I am better than 50%-50% that I'm going to try it, watch my blood sugar, blood pressure, and calcium scores.
For me, they found my one met with an Axumin scan with PSA of 3...I was negative on bone scan and CT scan....my MO at Cleveland Clinic put me on Zytiga and got my first Lupron injection within 2 weeks....I did stereotactic radiation 6 weeks later at UPMC--Dr Burton......I have my 10 month f/u at end of August...so far, God has given me the blessing of being "undetectable" on my PSA tests....I chose to hit it hard early while in the initial part of the disease...I guess I'll find out if that was a mistake over time....currently, I am very satisfied....Holding onto a bullet when your castle is under siege makes no sense to me...kill the buggers while there are less of them...Many drugs in development....
Ultimately, the choice is yours....best of luck....
Except, the God part But, I will say this for you. Maybe, your God has given you the fantastic ability to research well, take a calculated decision and then execute and monitor. All the very best to you, Fish.
I’m in agreement with Don P. If adding Zytega to Lupron in metastatic disease increases survival 40%, it’s likely it will help in your case. Keep in mind Lam and his group were adding Zytega to Lupton long before the trials proved it to be a game changer. These guys are ahead of the curve. It’s a no brainer in my mind. But that’s me. Time to decide my friend. No guarantees in this business
Howdy TE, we still haven’t connect BUT glad that you’re sharing your history here. Here’s my take on Zytiga. Standard of Care for ADT is first generation hormone suppression and androgen blockage. This is typically Lupron or Firmagon (to get you to castrate level) and Casodex or similar drug to block androgen receptor from (presumably) feeding the PC cells. Zytiga/Xtandi/Erleada, in my opinion are newer and second generation anti-androgens drugs, so to me it really is a matter of cost and hope that newer drugs like it will have better response to managing PC with similar SEs like libido, gynecomastia, hot flashes, energy and muscle decline. I believe that with PC, there is still no “permanent” cure, so we will all someday get recurrence or die of something else. So the question is can you tolerate the SEs and can you afford it (with insurance that pay). I’ve been lucky that at 17 months I am still at “undetectable” PSA, and still able to tolerate the SEs and stay active.
J, keep rocking those undetectables! Saw Kristi last month, she said Dr A looks good, feels good, etc.
GD
Ask each of the doctors suggesting how to treat, “Doc, if you were in my shoes, what would you do? Which treatment would you seek? Hopefully, they will pause and really think about the question.......
GD
Just curious. Why both Zytiga and Lupron when both shut down testosterone from the testicles? Doesn't Zytiga shut down all T except that generated by the cancer cells themselves?
TE, what is your current PSA? With a heart condition, I would be careful and try to stay with what we know, there is no evidence of early use of Zytiga and you could be doing long-term damage besides the Side Effects.
BTW, does anyone in the Los Angeles area know of a good if not great MO besides the three at Prostate Oncologist Specialist?
PSA <0.05. Scholz's group wants BP numbers and blood work every 3 weeks at first. Scholz's group been administering Zytiga/prednisolone for intermediate PC. Mine has local nodes involved pre and post op.
Just came across this post, I am a little late to the thread, but like you I had an immediate PSA right after RP in Feb. .9 Bad biopsy, Gleason 9 with at least one lymph node. Started casodex and Lupron end of April and dropped the Casodex after 30 days and added Zytiga. I actually pushed for it with my oncologist because I figured there was a good chance some PCa cells were out of the area already where my Salvage RT would cover. Now down to <.1 (As far as Kaiser will measure.) Hardly any side effects besides a little anemia and a little loss of muscle strength even though I work out a lot. Finally starting SRT in about 3 weeks. I have been waiting for my incontinence to get better.
So how did you do now that you are done with SRT. Any bad side effects?
How about Zytiga side effects? Any recommendations for SRT?
Dont know the difference between SRT and IMRT, which I had. PSA 0.17 right before beginning June 1st radiation treatments and January 4th surgery. I am a little more incontinent after July 31st completion of radiation. Dallas uro surgeon said stop with surgery and radiation. LA oncologist said tak Zytiga/prednisolone and I started August 10th. Last PSA on July 8th was <0.05, with 3 weeks to go with radiation
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But, I will say this for you. Maybe, your God has given you the fantastic ability to research well, take a calculated decision and then execute and monitor. All the very best to you, Fish. 
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