Should I Keep Zytiga "In My Hip Pocket?" - Advanced Prostate...

Advanced Prostate Cancer

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Should I Keep Zytiga "In My Hip Pocket?"

TEBozo profile image
26 Replies

UT Southwestern Medical Center's Urology department is their most prominent. Huge teaching facility and very noteworthy physicians. I also consulted with Prostate Oncology Specialists, a 3 doctor oncology specialty group from Marina Del Rey, CA headed by Mark Scholtz MD (prostateoncology.com/prosta... After a radical prostatectomy on January 4, we found three of 14 lymph nodes to be cancerous. UT Southwestern Dr. explained that I would have to go on ADT for 12 to 24 months which would be Lupron plus IMRT radiation. After reading Dr. Scholz's book The Key to Prostate Cancer, I went to Los Angeles for a consult. They convinced me to have the new, experimental, Gallium PSMA scan which is ultra sensitive and would show micro-metastases and whether my cancer had spread to the bone bladder etc. Fortunately it had not but they found three more lymph nodes involved and Dr. Scholz's team contradicted my Dallas Dr. and suggested Zytiga and prednisone in addition to the ADT shots and radiation. After much research, with the help of people here and elsewhere, it certainly appears that the Zytiga and prednisone creates more successful outcomes than not.

When I presented this dilemma to my Dallas doctor, he said that he wanted to keep Zytiga "in our hip pocket." He further stated that the cancer cells actively seek immunity to the Zytiga and if that happened to me, my backup would be limited. This is totally opposite of Dr. Scholz's teams recommendation and they said hit it hard and hit it fast. While in LA, I got a Firmagon shot which I'm tolerating quite well and plan on continuing in lieu of Lupron.

What is a man to do?It is only life-and-death

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TEBozo
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26 Replies
6357axbz profile image
6357axbz

I’ll probably add the Zytiga/Prednisoe to my Lupron soon while I’m still hormone sensitive. I’m no expert but the consensus by those here seem to be do it now. Hit it hard and early. FYI I just started IMRT.

TEBozo profile image
TEBozo in reply to6357axbz

Where is here?

6357axbz profile image
6357axbz in reply toTEBozo

This blog

NPfisherman profile image
NPfisherman

TEBozo,

I would do what was advised by Dr. Scholz and do zytiga + ADT + adjuvant IMRT. Hit this sucker early on with the kitchen sink. Holding it in his "Back pocket" is not what is advised in the STAMPEDE trials--giving Zytiga early on resulted in prolonged survival and slowed progression... I would do ADT for 24 months--yes, Lupron brain fog is no fun, as well as other side effects but why cut short and risk recurrence??

Good luck...

Don Pescado

TEBozo profile image
TEBozo in reply toNPfisherman

Thanks, Don. I feel the same. Note that I am doing quite well on the Firmagon and am not planning on switching to Lupron. Tom

NPfisherman profile image
NPfisherman in reply toTEBozo

Sorry....the ADT causes brain fog--didn't mean to imply that you should change to Lupron as there are indications of more cardiac risks with Lupron than degarelix...I just am on Lupron and got "the fog"--my mixup--an article on ADT and Cognition:

ncbi.nlm.nih.gov/pmc/articl...

You have your plan, warrior...execute it and may you escape this hell ship forever... God be with you...best of luck...

Don Pescado

Tall_Allen profile image
Tall_Allen

I'm not at all sure that Zytiga adjuvant to ADT and whole pelvic radiation (WPRT) adds anything over ADT+WPRT alone. On the other hand, I'm not sure it doesn't add a benefit. I know a few guys who have added it. I have no idea what research you've seen, since there have not been any published studies about it. My personal opinion, and it's just an opinion, is that there is some benefit. I also don't believe in the "hip pocket" approach. Killing off as many cancer cells as possible as quickly as possible seems to have the greatest long-term benefit. And - there will always be new therapies approved later. With known cancer in pelvic LNs, I think you should consider at least 2 years of adjuvant ADT, whether or not you add Zytiga.

podsart profile image
podsart in reply toTall_Allen

Until recently, I was in the hit it fast and max camp.

The recent discussion regarding use of adaptive treatment strategy injects the issue of balance between the more aggressive Pca cells vs less aggressive Pca cells balance approach and using a “mowing the grass” approach to extend time to resistance introduces another angle.

Perhaps a quick initial max blast followed by an adaptive treatment protocol would make sense

What’s your view?

Tall_Allen profile image
Tall_Allen in reply topodsart

I think that the EVIDENCE (which is all I care about) is that maximal systemic reduction of cancer load has a greater impact than any purported effect on selective pressure. There may be ways of reducing the selective pressure too, but that is in the realm of personalized medicine, and we are not even close to being able to do that without endangering patients.

podsart profile image
podsart in reply toTall_Allen

Thanks, appreciate your view

TEBozo profile image
TEBozo

Schwab suggested that we talk. I am on board with 18-24 months of ADT and the radiation set for May 26th. PM me?

Schwah profile image
Schwah in reply toTEBozo

“Schwah” not “Schwab” lol. Yes I have great respect for Tall Allen. He has lots of knowledge and is very logical. I think the studies TEBozo refers to are the studies about adding Zytega to ADT for bone mets on hormone sensitive men. Logic dictates that if adding Zytega early when the cancer has left the prostate and gone to the bones has been proven to reduce deaths some 40%, that if the cancer has left the prostate and gone to the lymph nodes, adding Zytega would also reduce deaths in that situation. Same cancer, spreading beyond the prostate. To me it would be shocking if it didn’t extend lives in that situation too. Entirely possible that my “logic” here turns out to be wrong. So there are risks to adding Zytega and risks to not. I’d do it 100% for sure. But at the end of the day you will need to gather all the facts and supppsitions and advise and make a decision. Note: Scholz office was putting men with bone mets on early Zytega with adt long before the studies proved the efficacy. That doesn’t guarantee they are right here. Only that they’ve been right before.

Schwah

TEBozo profile image
TEBozo in reply toSchwah

Schwah, since the Gallium scan at UCLA showed no bone mets, perhaps that is UTSW Drs argument against Zytiga and Prednisolone. Still trying to get the Zytiga in, prednisolone script in hand from Dr. Scholz' office. Will make final decision in next week.

One more opinion to really confuse you: wired.com/story/cancer-trea...

(long but worth it for fresh ideas)

TEBozo profile image
TEBozo in reply to

Very confusing I wish it had more test subjects and a longer period of time to judge the results. I'm going to send this to Dr. Richard Lam at Prostate Oncology Specialist. It is sort of what my Dallas doctor is telling me, that is, to keep Zytiga in reserve. He even said that once I went through ADT and radiation, if there were any hotspots that showed up later, they might radiate those too

tom67inMA profile image
tom67inMA

My opinion: early aggressive treatment works because the less cancer you have, the less opportunity for it to mutate and resist treatment. Also the less cancer you have, the healthier your body and to the extent your immune system is able to pick off stragglers the better it can defend itself.

Those evolutionary based treatments are looking to maintain the cancer at its current state but not reduce it, cure it or even get rid of some metastases. They might make sense if you're asymptomatic.

Just my idle speculation, no studies to back it up other than the usual ones that show early Zytiga works.

Blackpatch profile image
Blackpatch

I am a few months ahead of you and only T3b i.e. in the seminal vesicles but not the lymph nodes, but I added the Zytiga to RT after PSA recurrence post RRP.

The logic is that you have a shot at a cure, so why not give it your best shot?

There are half a dozen trials underway looking at using the second generation ADT agents in this early setting (although mainly enzalutamide rather than aberaterone/Zytiga) but the closest results are a couple of years away... I asked several oncologists and radiotherpists and the general consensus was adding Zytiga was what they would do if they were in my place.

I too have been wondering about the issue of the Zytiga wiping out all the hormone sensitive cancer, thereby giving the really bad stuff a chance to grow - I guess it might happen, and maybe I will drop back to just gosrelin after a few more months of Zytiga and see if my now-zero PSA reappears... but a cure is a goal worth taking some risk for.

Stuart

cancervictim profile image
cancervictim

My husband was in a similar situation with pathology results only he didn't have a PSMA scan. He did aRT then started on ADT. Shortly after that, the study on Zytiga for newly diagnosed men came out. I had already reviewed the papers re survival for G9 N1 men and I felt we had nothing to lose. You should compare the outcomes of Zytiga (Abiraterone) for Castrate resistant men vs hormone sensitive men. I'm of the opinion that if you keep Zytiga in your back pocket, there won't be much to carry around. Here's the publication for Zytiga for CR guys. nejm.org/doi/full/10.1056/n... and the study (Stampede) that included high risk, non-metastatic guys. nejm.org/doi/full/10.1056/N...

Scorpio99 profile image
Scorpio99

All of the accounts of advanced prostate cancer I've seen recounted online attests to the failure of the medical profession to insist that all their male patients over 40 years old get yearly PSA screenings and any sudden spikes in their score (4 or above is a problem) be followed up with an immediate biopsy. Men also need to start talking among themselves about these issues, as most women do already about breast cancer.

strummer profile image
strummer in reply toScorpio99

our story. no psa, several dre, symptoms that no one connected to pca. and here we are. stage IV, gleason 9, mets galore

dadzone43 profile image
dadzone43

In this case, there is not enough information for you to have a totally informed opinion. You need information to be informed. IN this changing landscape it is not possible to know. So you make a choice and you live with your choice. Do you prefer "hip pocket" or do you prefer "hard and fast"? You chose RP, not semi-prostatectomy in case/hope some of the prostate was still good. If you have, as another patient has already said, a shot at a cure, shouldn't you take it?

TEBozo profile image
TEBozo in reply todadzone43

A shot at a cure is the reason that I want to go for a maximum reduction(elimination) of the total cancer load in my body. So yes, I am going to go hard. The several men with whom I have discussed their taking the Zytiga/presidone say that there are no added side effects which is encouraging. I am exercising daily but need to clean up my diet and restrict or eliminate alcohol consumption.

Eugmn profile image
Eugmn

Thank you for posting this topic on keeping Zytiga in the hip pocket. My

Dx was 9/17. 2-lymph nodes affected. I immediately started Lupron and have been on it since 10/17. I had XRT a couple months later to the prostate and lymph nodes. My psa was at its lowest .73 about 6 months after XRT. My last psa a couple weeks ago was

.79. The doctors are not concerned as the increase is very minimal. I have asked them about adding Zytiga. They too believe in the hip pocket approach. After my last appointment my oncologist did give me the option if I chose to add Zytiga to my treatment. I have been really thinking about it and then I saw this post. I’m thinking I’m going to contact my doctor and get on Zytiga.

TEBozo profile image
TEBozo in reply toEugmn

Me, too. Filling the prednisone script waiting on Zytiga to arrive. Thanks to those on these additional drugs for your story and counsel.

j-o-h-n profile image
j-o-h-n

Greetings TEBozo you're getting good recommendations here... I would listen to Tall_Allen he knows his shit. I hate to be a party pooper but once you have the big C you will always have the big C. But don't fret you'll be around for a very long time. So live your life and deal with this one day at a time. You'll probably reach room temperature at age 92 when someone in the nursing home calls you a Bozo and you duke it out with him.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/17/2019 6:53 PM EDT

TommyTV profile image
TommyTV

Taking Zytiga/Prednisone with ADT delays the onset of CRPC significantly. I’m over seven years in after a dx of 571.

Taking them together stops the small additional testosterone from your adrenal gland feeding the PC and allowing it to mutate.

I have the results of STAMPEDE from a couple of years ago, and the difference in outcomes between ADT, and ADT plus Zytiga are significant, approx 40% increase of average OS. There are some like me who have survived significantly longer.

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