When to resume treatment?: Diagnosed in... - Advanced Prostate...

Advanced Prostate Cancer

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When to resume treatment?

traveller64 profile image
28 Replies

Diagnosed in 2010, surgery in 2011, PT3b. RT in 2012. PSA recurrence in 2014, PSMA scan negative at PSA 0.8.

Treated with Casodex since 2014. Drug holiday since Sept 2020 (18 months) and continuing . PSA 18 months ago 0.02, gradually increased to 0.9 in 18 months. Last PSMA scan in June 2021 negative. PSADT around 7 months.

I know I have to start treatment at one point. Which one is better:

A) Start treatment at a certain PSA level even if scans are negative. If yes, what would be that magic number? or

B) wait until scans show mets, if feasible radiate them and start treatment

Since Casodex did not fail yet, I plan to start treatment with Casodex again.

Your comments will be much appreciated.

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traveller64
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28 Replies
Justfor_ profile image
Justfor_

In another PSA range I take Casodex at the min dose that will stabilize my PSA to a target value, low but not undetectable. This, for my personal opinion is that a managed PSA equilibrium will be effective longer to any sequence of intermittent (on-off) cycles. Started Casodex November last when my post RP PSA attained 0.17 and lately 50 mg per week (NOT per day) are enough to stabilize it to 0.05 which has been my target.

traveller64 profile image
traveller64 in reply toJustfor_

Hi Justfor, I guess you are located in Europe. I used Casodex for 6 years before giving a break at varying doses. Started with 50 mg/day then reduced dose to 50 mg per week but it didn't work. 2x50 mg per week forked for I guess three years. Then PSA started to increase slowly. Increased dose to 50 mg daily and PSA was undetectable. So it has been 7.5 years since recurrence ( 6 + 1.5 years ) and my PSA is still below 1. Can I ask where you are treated? Normally no MO treats high grade high risk patients with casodex at low doses. My MO was Dr. H. Scher at MSK NY.

Justfor_ profile image
Justfor_ in reply totraveller64

I am in Europe (Athens) and during this period "self experimenting". I view my case with the eyes of my engineering background. Electric motors fail more by the stresses induced during start- stop cycles than by kept constantly spinning. Hard disks at server farms never spin-down. If one does, it is for its replacement. Red flashing lights on top of broadcast antennas are not switched hard on-off. During the dimmed period there is current flowing to keep the filaments warm but not illuminated. Changing bulbs at a height of 100+ meters is not a task to undertake frequently. I am applying such principles on my own body. Kill as many cancerous cells as the new-borns.

j-o-h-n profile image
j-o-h-n in reply toJustfor_

Also with your engineering background please tell me why, when 3 Greeks get together you end up with get 4 Generals...........OPA!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/03/2022 5:57 PM DST

Justfor_ profile image
Justfor_ in reply toj-o-h-n

Because all of them, after drinking some spirit (tsipouro/raki), were self-promoted to Generals and one of them caters for his absent brother in law (kouniados). Elementary Watson!

j-o-h-n profile image
j-o-h-n in reply toJustfor_

έτσι kai έτσι Bravo!!! Yiasou Levende!!!... OPA!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/03/2022 6:45 PM DST

StayingOptimistic profile image
StayingOptimistic in reply toJustfor_

I am an engineer too and I like your idea. How do you monitor your disease progression while on casodex?does it have any impact on when you start using the heavy drugs like Lupron? Any effect on letting castrate resistant sets in earlier?

Justfor_ profile image
Justfor_ in reply toStayingOptimistic

By monthly PSA counts. I document them on my "Bicalutamide maneuvers" thread.

Tall_Allen profile image
Tall_Allen

Weren't you doing well with Casodex+raloxifene? Why did you discontinue that?

traveller64 profile image
traveller64 in reply toTall_Allen

Yes Allen my PSA was stable and undetectable with Casodex 50 mg/day. A drug holiday helped to improve libido. besides I don't have to use tamoxifen to prevent gynecomastia. Intermittent therapy may also extend the time to drug resistance.Can you share your view on when to resume treatment? I guess there are no clear guidelines

Tall_Allen profile image
Tall_Allen in reply totraveller64

I thought raloxifene helped you maintain testosterone levels and libido? no? I'm trying to understand why you don't just resume that treatment.

traveller64 profile image
traveller64 in reply toTall_Allen

recently raloxifene caused testosterone decrease as well

Tall_Allen profile image
Tall_Allen in reply totraveller64

What are your thoughts about only using estrogen patches with tamoxifen or raloxifene? Estrogen may help maintain libido even while it lowers testosterone. Tamoxifen or raloxifene prevents gynecomastia, but idk if it will also interfere with estrogen's T-lowering effect. This is all untested.

traveller64 profile image
traveller64 in reply toTall_Allen

I don’t know, will ask MO.

I guess you aren’t in favor of “drug vacations” am I right?

Tall_Allen profile image
Tall_Allen in reply totraveller64

I think there is no right or wrong. Are you still seeing Michael Morris? - there is none better.

traveller64 profile image
traveller64 in reply toTall_Allen

No, I'm seeing D. McHugh (previously Dr. Scher's fellow). Allen, my PSADT 7 years ago at the time of recurrence was less than a month. Now it's been around 7 months during the drug vacation. Any thoughts whether this is good or bad?

Tall_Allen profile image
Tall_Allen in reply totraveller64

Obviously, faster is worse. There have been some interesting trials of using limited term advanced hormonals in recurrent patients when the PSADT is rapid:

ejcancer.com/article/S0959-...

meetinglibrary.asco.org/rec...

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

in reply toTall_Allen

One data point: I was using patches to supply 0.3 mg/day of estrogens. After about 3 months I was getting gyno so added Tamoxifen for one month. My T stayed undetectable (<10 ng/dl) as did my PSA (<0.01 ng/ml). My MO was concerned about possible cardiac risk so I stopped Tamoxifen.

My libido was zero throughout. DEXA scans showed bone growth in one of three areas and a slight decrease in the other two areas (bone decrease rate was about 20% of what it had averaged over the prior decade).

Tall_Allen profile image
Tall_Allen in reply to

There are tamoxifen patches that can be made by compounding pharmacies. It may have lower risk of blood clots (just as transdermal estrogen has lower risk of blood clots).

in reply toTall_Allen

Interesting. I'll look into it.

GP24 profile image
GP24

Which one is better:

A) Start treatment at a certain PSA level even if scans are negative. If yes, what would be that magic number? or

B) wait until scans show mets, if feasible radiate them and start treatment

I would recommend A). When mets are visible, Casodex 50 mg may not be effective enough to control the cancer. And Casodex 50 mg has very limited side effects.

Magnus1964 profile image
Magnus1964

Start casodex as soon as possible. I don't like "vacations". they just give new cancer cell lines a chance to find a work around to the drug. Hope casodex still works for you.

MateoBeach profile image
MateoBeach

Cancer is not like a motor, light bulb or hard disc in one extremely important way (among others). Those metaphors are interesting, but they are fixed systems. They can wear out but they do not reproduce, adapt and evolve. Cancer cell populations are dynamic complex adaptive systems. Any treatment that is maintained long enough will eventually fail as sub-populations of mutated resistant strains will be favored, selected and eventually dominate. = Treatment failure. So in principle at least, changing up treatments before full failure and providing different selective pressures makes sense. But these are generally not tested in major clinical trials where ADT is usually maintained continuously as the SOC in all arms. However, you no doubt already know that intermittent ADT has been demonstrated to be non-inferior to continuous. So you are on solid ground there in choosing that personally for yourself. That BAT or modified BAT works for some is another proof of the concept. Some of us are applying this to HSPC ourselves with surprisingly good results. Casodex is a fine alternative to LHRH ADT for many, and can work for years before failing and starting to feed the cancer. You are fortunate it is still working for you. Testosterone is still present so some of its benefits are there despite blockade of AR receptors. Muscle and bone may be maintained and libido, while low, is often not zero.

Interesting too, is that anecdotally some years on Casodex alone for PC with short PSADT, that even after stopping it the PC may be more indolent with a longer PSADT. That happened for me also.

As to when to restart Casodex, it is your call. Personally, I wouldn’t let it go much above PSA of 1.0.

Another thing I wonder about is that BAT has been shown to restore responsiveness to enzalutamide. So could my time away from Casodex,and now being on modified (long cycle) BAT, possibly restore my responsiveness to Casodex for when BAT finally fails?

Justfor_ profile image
Justfor_ in reply toMateoBeach

I have got another metaphore for you this time with living organisms. The urbanists know that the center of cities, where the price of land gets prohibitively high for sustaining residential uses, which are consequently evicted and administrative/business uses take over resulting in low circulation of everyday people outside business hours, crime sets foot. It took them some time to take notice and some decades now the trend in urbanism is to try keeping a mixture of all uses alive avoiding segregation. Medicine will take notice of this fact sometime in the future. For the latest half century SoC is killing all hormone sensitive cells regardless the fact that by doing so room is offered to their nastier relatives.

in reply toMateoBeach

I wonder the same thing about resensitizing. Enza and Caso have similar mechanisms of action. Since BAT restores enza, what about similar drugs?

ishitasen profile image
ishitasen

Traditionally the first approach "a) Start treatment at a certain PSA level even if scans are negative" was preferred earlier, however with the emerging new data and with the advent of the most sensitive PSMA PET/CT scan the second approach "b) wait until scans show mets, if feasible radiate them and start treatment" is preferred nowadays. If you are asymptomatic I would advise the second approach.

In between, you can continue with the Casodex. Casodex among others is an anti-androgen medication that is primarily used to treat prostate cancer. It is typically used together with a gonadotropin-releasing hormone analogue or surgical removal of the testicles to treat advanced prostate cancer. However, Casodex is associated with few side effects such as hot flashes, swelling in your hands, ankles, or feet, increased night-time urination, weakness, dizziness, etc. A regular follow-up with your treating physician would be highly recommended.

traveller64 profile image
traveller64 in reply toishitasen

Thanks for your reply. If option (b) is adopted, how frequent you would get PSMA scans?

ishitasen profile image
ishitasen in reply totraveller64

Initially, PSMA scans can be repeated at six monthly intervals and should be correlated with latest serum PSA levels. If there is any foci of increased PSMA uptake, then treatment can be personalized, depending upon the site of the disease. If there is no significant interval rise in PSA levels and PSMA scans remain negative then the interval between PSMA scans can be increased subsequently.

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