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PSA Anxiety and Intermittent ADT for Metastatic Prostate Cancer

dac500 profile image
31 Replies

In ten days time, I go for three monthly blood work and appointment with MO. And as usual I am on edges. I have prostate cancer over 10 years. First treatment in 2011 brachytherapy for Gleason 3 + 3 low volume prostate cancer. In 2016-17 cyberknife with 9 month ADT for extra capsular recurrence. In 2018, PET/CT scan finds metastatic cancer in multiple pelvic and abdominal lymph nodes. Then during one year on Lupron+Casodex my PSA drops from 4.48 to 0.06. Then during a nine month ADT break my PSA increases to 0.07 to 0.135 during the first 6 months and in the last three months it increases to 0.456. So, ADT is restarted. In the next nine months PSA drops from 0.456 to 0.266, to 0.193, to 0.116. In June this years I started another ADT break. My last 3 month Eligard shot was on March 2, but I still have intense hot flashes. As a matter of fact my past experience has shown strong side effects to remain even after one year of stopping ADT.

I know there is mixed opinion on intermittent ADT for metastatic cancer. I have read articles that it can delay becoming castrate resistant. While other articles come to the opposite conclusion. My MO appears to have the former opinion and he thinks taking breaks can reduce cardiac risk.

My question is if taking breaks don't improve my QOL significantly, what's the point of breaks. Breaks actually increase my anxiety level. I rather see my PSA undetectable ( <0.1) keeping the cancer under control until it becomes castrate resistant, whenever that may be. Depending on how fast my PSA increases during this break, I might decide to restart ADT in November this year or March next years. Then I am thinking about staying on continuous ADT.

Feedback is welcome.

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dac500
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31 Replies

No one seems to know for sure and likely, like all things prostate cancer, it depends on your cancer’s personality. Long duration ADT can cause regular cancer to turn to NE, some say. Some say it may be the on and off use that causes that. But yet you need to give your bones and joints and heart some relief. What a horrible Hobsian choice

Tall_Allen profile image
Tall_Allen in reply to

That's a fraudulent argument. That's like saying if you live longer, you are more likely to die. That is true.

in reply to Tall_Allen

Wasn’t aware I was making an argument, let alone a fraudulent one. Hopefully no one would rely on anything I would say anyway, which is of course one of the elements of fraud.

Tall_Allen profile image
Tall_Allen in reply to

You were repeating what you've heard. What you've heard is a bogus argument. It is like saying that if you live to 90 you are more likely to die soon than if you live to 40. It's true, but that doesn't imply that one should avoid living to 90.

Tall_Allen profile image
Tall_Allen

"I have read articles that it can delay becoming castrate resistant." I have NEVER seen such a study. Do you have one?

dac500 profile image
dac500 in reply to Tall_Allen

Sorry I didn't keep the reference. I will search for it again.

dac500 profile image
dac500 in reply to Tall_Allen

Here is a reference:

pubmed.ncbi.nlm.nih.gov/264...

Following is quoted from the article:

"Results: The characteristics of patients showed no significant differences between the CADT and IADT groups, except for the Gleason score (p<0.001). The median time to CRPC of all enrolled patients with ADT was 20.60±1.60 months. The median time to CRPC was 11.20±1.31 months in the CADT group as compared with 22.60±2.08 months in the IADT group. In multivariate analysis, percentage of positive core (p=0.047; hazard ratio [HR], 0.976; 95% confidence interval [CI], 0.953-1.000), Gleason score (p=0.007; HR, 1.977; 95% CI, 1.206-3.240), lymph node metastasis (p=0.030; HR, 0.498; 95% CI, 0.265-0.936), bone metastasis (p=0.028; HR, 1.921; 95% CI, 1.072-3.445), and CADT vs. IADT (p=0.003; HR, 0.254; 95% CI. 0.102-0.633) were correlated with the duration of progression to CRPC. The IADT group presented a significantly longer median time to CRPC compared with the CADT group. Additionally, patients in the IADT group showed a longer duration in median time to CRPC in subgroup analysis according to the Gleason score."

Perhaps you can provide an in-depth analysis and tell me that I am reading the conclusion wrongly.

in reply to dac500

That’s a pretty wild graph

Graph
Tall_Allen profile image
Tall_Allen in reply to

GIGO

Wings-of-Eagles profile image
Wings-of-Eagles in reply to

Also a meaningless graph, IMO

Tall_Allen profile image
Tall_Allen in reply to dac500

That does NOT apply to you. only about a third of the Korean patients were metastatic. It was a hodgepodge of patients at different disease stages. Moreover, it is a retrospective study. That means the patients got the treatment they got because the treating physician decided they would do better with it.

What you have to look at is a RANDOMIZED clinical trial among metastatic men like yourself. Here is the only one that's been done:

nejm.org/doi/full/10.1056/N...

What they found with respect to castration resistance is that it occurred at exactly the same time whether men were randomized to intermittent or continuous (Figure S5).

The decision about whether to risk intermittent ADT should ONLY be made on the basis of whether the side effects of ADT are tolerable.

dac500 profile image
dac500 in reply to Tall_Allen

Thanks for the clarification. After the current break I would probably insist on continuous ADT.

maley2711 profile image
maley2711 in reply to Tall_Allen

It seems the conclusion was that intermittent is not a terribly damaging road to follow.....pending future studies with more endpoint events?

we should never consider and always ignore retrospective studies...absolutely worthless?

Tall_Allen profile image
Tall_Allen in reply to maley2711

The relevant conclusion was that castration resistance occurred at the same time irrespective of iADT or cADT, as I said.

Sometimes retrospective is all we have. And there are ways to improve relevance. In this case, we have much better.

6357axbz profile image
6357axbz

Too bad you didn’t get a PSMA Pet/CT scan after last adt holiday which would have at least shown you where your mets are. Many of us have “Hot Flashes” and learn to live with them. They aren’t that bad.

Atlantic77 profile image
Atlantic77

EMBR thermal device for hot flashes during ADT

clinicaltrials.gov/ct2/show...

The device is available for free through the clinical trial in the above link with some feedback required, otherwise it is available for $249 through the link below

embrlabs.com/products/embr-...

London441 profile image
London441

I focus on diet and exercise, I don’t depend on higher T level to reduce side effects and never have. Most men have various co morbidities, obesity, pre existing low T etc that help prevent T return anyway. Even without those, age is also obviously a big factor. It’s a tough game to win.

It brings me piece of mind to instead concentrate on something I can do that makes a critical difference in quantity AND quality of life. For me diet and exercise belong squarely in front of my considerations of testosterone level.

doc1947g profile image
doc1947g in reply to London441

Here you will see my T levels post-ADT (Last one on 2020/08/24):*Post-Hormonotherapy

< 0.2nmol/L - < 5.7637ng/dL (2020/09/15),

0.3nmol/L - 8.6455ng/dL (2020/12/15),

0.4nmol/L - 11.5214ng/dL (2021/02/11),

6.6nmol/L - 190.2014ng/dL (2021/03/12),

6.4nmol/L - 184.4378ng/dL (2021/05/28)

But even at 6.4nmol/L, I do not have any libido and I still have DE.

London441 profile image
London441 in reply to doc1947g

What was your baseline T at diagnosis? 6.4nmol/L after almost a year isn’t great but it isn’t that bad either, depending on your overall health, body composition and fitness-which you’ve still made zero mention of. What about these? What kind of shape are you in? These things are bsolutely critical.

doc1947g profile image
doc1947g in reply to London441

Testosterone Normal =

(3.0 à 27.4nmol/L 86.526 à 790.2708ng/dL).

Diagnostic 2020/03/03

2020/04/04 Eligard 45mg/24weeks screwup

Pre-Hormonotherapy =

10.30nmol/L - 294.19ng/dL (2020/05/04),

15.2nmol/L - 438.04ng/dL (2020/05/27)

2020/05/31 & 2020/08/24 Lupron Depot 22.5mg/12weeks.

I also have a lot of chronic diseases and a general body weakness.

London441 profile image
London441 in reply to doc1947g

Since your testosterone was on the high end of normal previously, it unfortunately follows that you have had a difficult time with treatment, particularly with your health issues. I’m sorry. It has returned slowly and not very much that’s for sure.

Having had a baseline T of 700 and in very good health is expected complete recovery by now (it’s been almost a year post ADT).

That hadn’t happened but I am hanging around in the 300-500 range. I started feeling much differently (better) at about 250. The difference between 35 and 250 was not noticeable to me. So maybe you’ll make more progress. Keep exploring your options.

I would seem to be in a much favorable position to yours, but of us have to adapt. I don’t have nearly the stamina, metabolism, libido, sexual function, memory or strength I had prior to ADT. Relentless incontinence from surgery and radiation eventually necessitated a artificial sphincter surgery. There is more, but you’re the last one that needs to hear it.

The point is throughout the treatment I was doing great. Side effects sure, but mere inconveniences from my view. The arc of medicine has changed so much, and continues to. After all of it I’m feeling better with the testosterone return, but it’s not that dramatic and otherwise I’m the same.

Making the best of what remains is the only thing I still seem to do really well. Great luck to you!

TEBozo profile image
TEBozo

Many are right there with you , either a little in front or behind. There is no "right" answer as our treatment process is somewhat subjective. God bless and God speed.

alephnull profile image
alephnull

I've been on intermittent ADT for almost 8 years.

And although my QOL is less, it is almost certainly better than the alternative.

dac500 profile image
dac500 in reply to alephnull

Return of QOL may depend on age. I am over 80. My hot flushes don't go away long after the last shot. My primary concerns are keeping the cancer under control and reducing my anxiety level.

j-o-h-n profile image
j-o-h-n in reply to dac500

Over 80?.... Congrats..........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 5:23 PM DST

Horse12888 profile image
Horse12888

The prevalent belief is that IADT is not inferior to continuous, regardless of one's clinical condition. You say that if vacations do not provide SE relief, there is no point, which seems correct. You also say that you're actually more anxiety-ridden when you're on a vacation, which is understandable.

If you switch to relugolix, you'll at least address your first issue, as your T will recover very quickly when you stop taking the drug. And maybe these true vacations will make assuage your anxiety, or at least make it worth putting up with.

Personally, I'll being using high-dose transdermal estradiol instead of a GnRH drug, which is supposed to carry far fewer SEs. This isn't FDA approved, as if I care. Knowing that such an option is available is a huge relief to me. Until I found this, I lived in terror of more ADT, intermittent or continuous.

Even IADT means living knowing that your next PSA test could send you back into misery for many months or maybe a few years, and that was a horrible notion. To call that "anxiety" is putting it mildly.

Exrunner profile image
Exrunner in reply to Horse12888

Did your Dr. prescribe the high-dose transdermal estradiol? The doctors I have talked to will not deviate from SOC...even to to mitigate the side effects of standard ADT.

Horse12888 profile image
Horse12888

I don't need it yet, but my onc says she will prescribe it for me when I do. If she wouldn't, I'd find someone who would, even if that meant leaving the country.

Btw, there are tons of PCa treatments begun every day that are not SoC: HIFU, TULSA, FLA, etc. Most patients never hear of them, because most doctors don't mention them.

PCa was my first experience with doctors who deliberately withheld treatment options from me. I had no idea that this was even possible.

Joecarver profile image
Joecarver in reply to Horse12888

I wasn't aware either, at that time I was in shock, and not aware there could be other options or to option for second opinion.

Horse12888 profile image
Horse12888 in reply to Joecarver

I've long said that the AMA should create a video featuring the pros and cons of every treatment option currently available and under development, and update it every year. Any medical practitioner treating PCa should get the patient to sign a document that attests to having seen it, or stating that he refused to.

The amount of suffering that derives from greedy doctors bilking naïve patients is

incalculable.

Joecarver profile image
Joecarver

Don't think my mo is greedy just goes by the numbers, on blood work.

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