An Update With some Questions Re: How Long on ADT?

I started having rising PSA about 2 1/2 years ago after being on intermittent Lupron for several years. My MO added Zytiga 1000 mg plus 5 mg prednisone daily, which brought me back to undetectable PSA and T. A year ago he discontinued the Lupron, saying studies now show it is redundant when also on Zytiga. Last fall he mentioned a possibility that after I've remained undetectable on Zytiga for two years it might (emphasis on might) be ok to consider taking a break from Zytiga. But when I saw him in January he said he thought stopping the Z wasn't a good idea. He said there is a study underway for going with a break in Z, but 1) my case didn't fit the profile of the study and 2) The risk (results are unknown - hence the trial) don't outweigh possible benefits of holding steady, especially given I haven't had significant side effects.

My wife asked if taking a break might prolong the effectiveness of Zytiga. He said there is no known difference in the meds effectiveness lasting longer by taking a break.

Thanks, Bohemond and Mattam for your comments, very useful info.
Mattam:" An an aspect of trial not much discussed is Intermittency. At week 37 any participant in any of the 3 arms who is undetectable, the treatment is withdrawn until a predetermined PSA returns. Those in the Combination arm averaged 20 months with no drugs".
Man, that sounds great! It makes huge sense to me that assuming the drugs are still working because I am still sensitive to testosterone, that if we withdrew the drugs, and PSA started rising, then starting the drugs again would knock it back down. I am certain it would work that way at least sometimes, how could it not? And if it was not going to work, wouldn't the PSA start to rise despite the rugs?
Mattam: "I'm sure getting tired of ADT too. Sooner or later I may talk to my MO about some kind of relief plan. Good luck at your appointment.". Thank you. My appointment was fine, PSA still undetectable, that makes undetectable for almost 2.5 years now.

Bohemond: " The risk (results are unknown - hence the trial) don't outweigh possible benefits of holding steady, especially given I haven't had significant side effects.".
No significant side effects? What the heck? How did you manage that, Brother? My muscle mass is gone and replaced with fat, I can't seem to build strength by working out, I'm very weak compared to before. And the hot flashes have not yet stopped and I seem to have no tolerance for heat at all. Which makes outdoor work or exercise really tough down here in MS.

But what really concerns me are the other changes that are known to increase risk of all cause mortality. Triglycerides doubled. Sugar up significantly. (Although, I did manage a 98 blood glucose yesterday! Whoohooo. True, I had only 1 piece of toast with my eggs and sausage in the morning and then fasted until the blood was drawn about 3PM. Plus some exercise a couple of times during the day before blood draw to burn some stored sugar. Still, that is my 1st time anywhere near below 108 since I started these drugs over 2 years ago. I was thrilled. I have mostly had either pre or actual diabetic readings ever since starting these drugs over 2 years ago. Yes, I know what to do about it, but I did not have this problem until I started these drugs. Anyway, I was downright tickled with that 98!

I'm not sure I see all of the advantage of saving me from death by PCa over the next few years if I replace that threat with a heart attack, stroke or diabetes. My doctors seem oblivious to the extra non PC risk, even though they are the ones who order the blood tests. They seem laser focused on the PCa. I guess that is understandable, but there are more ways to die than PCa. None of these blood tests - except of course for PSA- are doing anything to increase my optimism regarding all cause mortality. Nor does the loss of muscle mass to be replaced by fat. Nor does weakness.

Then again, maybe I complain or worry too much. I am 75 years old, after all, and every one must die of something, right?

Post Edited (BillyBob@388) : 4/10/2024 7:24:21 PM (GMT-8)

>>No significant side effects? What the heck? How did you manage that, Brother?>>

Fair enough - I have lost muscle and gained fat.

But otherwise, I don't have hot flashes or fatigue. And all my blood work remains consistently good -- liver and kidney function, blood sugar, etc. all normal. Though coming up for quarterly labs in two weeks. Never know when the results might bring an unwelcome surprise.

NewspaperLover said...
BillyBob, The intermittent ADT described by mattam above in the EMBARK trial is me, real time right now. My MO placed me on the EMBARK ADT schedule last April, adding one month of Firmagon up front to six months of Lupron/XTANDI. He is very positive about the EMBARK findings. Took my PSA down from 18.6 to .16. MO paused treatment in November. He has not given me a target PSA number when he would start treatment again. Three month blood work in February was up to .73 — hardly unexpected. Regarding SE I definitely feel better — reduced fatigue, sometimes flushed, but no full on hot flashes. T is still NoWhere Man, 7 in February. One thing to note is that my MO has done similar long pauses with me in the past, without XTANDI. See below. My MO’s approach is different from that of Bohemond and mattam. I have managed to get to age 80, nearing 15 years since diagnosis with a Gleason 8, but this approach can have its *** moments. During a prior pause a met appeared close to the rectum (my first) that required SBRT. Concentrated my mind wonderfully. If you have any questions at any time my email is on my HW profile. Best wishes… Bill

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Thanks for that info, Bill!
Bill

GoBucks said...
You may be intersted in this trial whether you qualify or not: https://classic.clinicaltrials.gov/ct2/show/NCT05241860
Study Chair: Atish D. Choudhury, MD, PhD Dana-Farber Cancer Institute
I emailed the Dr to see if there was any prelim reports. This is what he replied:

Thank you for your message, but I apologize that I do not have any preliminary results from the trial (and I would not be able to share even if I did).

In my own practice, the outcomes from treatment breaks are highly variable in terms of both time off treatment (some patients have remained off treatment for years, while others had to resume relatively quickly) and in terms of quality of life (some patients feel much better off treatment, and in others it doesn't seem to make a big difference.) The trial is an opportunity to collect some preliminary data in a selected group of patients to report the outcomes in a standardized way.

I appreciate your interest in the topic and I wish you all the best moving forward.

-Dr. Choudhury

I have been on a break since June 2022. Still undetectable. My T is still low but I am awaiting Dr ok for a scrip. Only symptom I still have is hot flashes at night.
Jim

Thank You, Jim! So, it sounds like people vary then? On a break for almost 2 years, still undetectable? WOW!
Bill

Diagnosed in 2013, I have been on continuous ADT, ever since.

First Lupron, then Firmagon, then Zoladex, which suppressed testosterone better for me, to help keep PSA in check.

After diagnosis, I had upfront chemotherapy with TAXOTERE.

From there, I started ZYTIGA perhaps 8 years ago, and have been on it, ever since.

I also had 45 radiation treatments a few years ago.

I have remained on ZYTIGA (Abiraterone Acetate) daily, for years, and co tinge to get ZOLADEX injections each month.

My health history is shown below.

With my best,
CYCLONE ~ # Iowa State University

Started out with a PSA that was rapidly rising, during the initial diagnosis phase. It skyrocketed up to 138.

That was tough news to hear, when I was still just in my 40s.

Prostate cancer had already infiltrated both of my lungs.

I honestly wondered if that would be the last Christmas I ever celebrated, when December rolled around.

I started out on LUPRON injections, to suppress my testosterone, which was fueling cancer.

That first month, my PSA plummeted to around 38 ~ a nosedive down from 138.

My doctor was incredulous. That was honestly the first good news I had received since diagnosis day. I drew great determination from that news.

The second month, my PSA level fell down from the 30s, down to single digits, near 10. Again, my doctor was elated.

Cancer cells were being "starved and strangled" ~ as he described it.

After the third full month of ADT injections, my PSA tumbled down into decimal levels, below 1.00.

Honestly, it was incredible. I felt like maybe I could find a seat in a lifeboat somewhere, and start paddling, at least.

The ADT injections continued.

But, miraculously, I was then allowed to be the first prostate cancer patient at my clinic to pursue UPFRONT chemotherapy.

I met my oncologist on a Monday, and by Wednesday, I embarked on a series of 6 full-strength chemotherapy infusions, given every 3 weeks, over the course of 18 weeks ~ from August to November.

My PSA crept down lower with each infusion, down to O.O5, I believe.

In time, my oncologist stated I could be his first prostate cancer patient to try ZYTIGA, and I have been on that continuously for over 8 years.

Dr. Kwon at Mayo Clinic suggested I undergo a series of 45 radiation treatments, to my prostate and pelvic region, given over 9 weeks.

Those radiation treatments seemed to stabilize PSA fluctuations, and things have remained stable ever since, with the ongoing ADT injections (ZOLADEX worked better for me than Lupron or Firmagon) and ZYTIGA, which is four 250 mg. tablets taken daily.

There were times when I didn't know if each treatment would help me.

In each case, each treatment, given in the sequence and combination described above, has helped me keep "rowing" in the lifeboat ~ for over 10 years now.

New treatments have been approved in recent years, and I give thanks that newly diagnosed fellows will be offered even more treatments, than ever before.

Just a bit of background, in response to your query ~
CYCLONE ~ # Iowa State University