Question: Was diagnosed with stage... - Advanced Prostate...

Advanced Prostate Cancer

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lovepockets profile image
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Was diagnosed with stage 4 metastatic prostate cancer with several mets to the bones and a Gleason score of 10. This was in January 2023. I have been on darolutamide and relugolix since then and also 6 rounds of docetaxol.

Everything was good until recently with an increase in PSA from non detectable to .167 and a subsequent PSMA scan showed no bone mets but 2 small areas of cancer, Gleason 10, at the base of my prostate. I was wondering what might be the next recommended treatments? Any ideas would be much appreciated, thanks.

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lovepockets
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32 Replies
MJCA profile image
MJCA

Hi,

I’m certainly no doctor. From what I gather the cancer is at the base of your prostate. Given that your PSA is still very low, they may just want to monitor you. They may wish to radiate those areas.

lovepockets profile image
lovepockets in reply to MJCA

Thank you for your thought.

God_Loves_Me profile image
God_Loves_Me

This is my personal opinion, and it is not medical advice. Currently, there are two small areas of cancer.

I would like to keep all the FDA-approved treatments for the future. As you are 75 years old and also assume that you are healthy, there is no reason to compromise your quality of life.

The biggest task is to find out whether darolutamid and relugolix cannot fight together, so monitor Testosterone levels and maybe find an alternative.

How about participating in clinical trials like ARX517 or other clinical trials?

Have you consulted with a radiation oncologist? It may be a good time to radiate them if both spots are at the same place or close to each other.

Debulking surgery is also an old way to remove the cancer spots using surgery. Everything depends on where it is

lovepockets profile image
lovepockets in reply to God_Loves_Me

I'm meeting with a radiation oncologist next week. Hopefully getting some direction.

God_Loves_Me profile image
God_Loves_Me in reply to lovepockets

if PSMA PET SCAN show two spots than consider to treat the two spots for now. I would do immediate basis.

Here is questions I would ask

- Keep all treatment for future and explore any clinical trials base on current report

- Take your time to understand clinical trials example just post here. You may find many users who already aware about the clinical trials

- Request to monitors the progress on three months basis

- understand PSA doubling time as well.

Leader4077 profile image
Leader4077 in reply to God_Loves_Me

Where can you get information on the clinical trial of ARX 517?

God_Loves_Me profile image
God_Loves_Me in reply to Leader4077

Please message me I will share with you. I am not allowed to share here.

Tall_Allen profile image
Tall_Allen

How many bone metastases were you diagnosed with?

lovepockets profile image
lovepockets in reply to Tall_Allen

It was widespread metastatic, more than 5 in the ribs, upper leg, some in the spine area

Tall_Allen profile image
Tall_Allen in reply to lovepockets

Then it would serve no purpose to radiate the observable cancer and could add toxicity with no benefit. Your PSA is still very low. If it gets to about 2.0 or the doubling time gets rapid, consider a change in medicines.

lovepockets profile image
lovepockets in reply to Tall_Allen

Thanks for your advice. Being a Gleason 10 is a real concern as the first time my PSA went from 1.8 to 14 plus in less than a year. What would be some other medications to replace my existing?

Tall_Allen profile image
Tall_Allen in reply to lovepockets

I'm confused. You wrote, "... an increase in PSA from non detectable to .167 ."

Your PSA is 14 now?

lovepockets profile image
lovepockets in reply to Tall_Allen

I'm sorry, initially my PSA went from 1.8 to 14 in less than a year. Was diagnosed with Gleason 10 and many bone mets. I started on darolutamid and relugolix and also 6 rounds of docetaxol which I completed in July 2023. In April 2024, my PSA started to rise again from non detectable to .167 which is not high but my most recent biopsy showed two small areas of cancer at the base of my prostate. It was also a Gleason 10. My PSMA scan showed the 2 areas of cancer but thankfully no bone mets.

I'm meeting with my radiation oncologist next Monday but was just wondering if there might be another alternative to radiation. Our main concern is the aggressiveness of the cancer. Hopefully, this clears things up somewhat.

Tall_Allen profile image
Tall_Allen in reply to lovepockets

Radiation is not an alternative for you, and your hormone therapy is still working, so no need to change it.

God_Loves_Me profile image
God_Loves_Me in reply to Tall_Allen

Learning questions - His PSA increased from non detectable to .167 and How did you make the call that hormone therapy is still working? I think he should wait till 2 PSA and then can we say that Hormone therapy is not working?

Tall_Allen profile image
Tall_Allen in reply to God_Loves_Me

Before forming an opinion, one learns from those who have studied such issues, and I respect that. Understand that resistance to a medication is a gradual evolutionary process, not a sudden binary response. It starts with one or a few cells that eventually take over. Meanwhile, most cellular activity is still suppressed. There are a limited number of effective medications for prostate cancer. The last thing we want to do is pull the plug on a medication while it is still substantially working. Eventually, all medications will become resistant - that is sadly the inexorable nature of cancer.

The top medical research scientists in the world have investigated this and come up with a set of recommendations, which they have refined it several times. All major clinical trials research is based on their recommendations. It is called the Prostate Cancer Clinical Trials Working Group, and they are up to version 3 (PCWG3):

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

Retireddoc profile image
Retireddoc in reply to Tall_Allen

The date of publication is 2016. I would be suspicious of any recommendations from an article that is so outdated, given the rapid progress in prostate cancer imaging and treatment.

Tall_Allen profile image
Tall_Allen in reply to Retireddoc

It seems to be a trend in America now that older can't be better. It may surprise you that Gleason grading has been around since 1966 (it has been incrementally updated but not substantially changed), PSA has been widely used for over 30 years, the D'Amico risk stratification system has been used since 1998, the Phoenix definition of biochemical failure after radiation has been used since 2005, and the definition of biochemical failure after RP has been used since 1996.

The reasons that it is not changed frequently are obvious if you give it some thought:

• the old definitions still work

• clinical trials take many years, and our knowledge is cumulative

• making a lot of changes in our definitions will make our previous learnings obsolete

For example, just last year, we got the very useful results of the EMBARK clinical trial. The huge, multi-institutional trial began in 2014 and used the PCWG parameters. It has already changed SOC treatment for recurrent patients.

PCWG is run by a blue-ribbon international panel of prostate oncologists. If they thought any of the parameters required updating, they would change them.

Rickmartin1948 profile image
Rickmartin1948 in reply to lovepockets

I wonder did you say several bone meths ribs etc or no bone Mets per PET CT PSMA?

lovepockets profile image
lovepockets in reply to Rickmartin1948

Initially many bone mets. After treatment no bone mets but 2 areas of cancer near the base of my prostate.

Rickmartin1948 profile image
Rickmartin1948 in reply to lovepockets

I’m sorry I did not get they are not visible or after treatment

addicted2cycling profile image
addicted2cycling in reply to lovepockets

lovepockets wrote -- " ... my most recent biopsy showed two small areas of cancer at the base of my prostate. It was also a Gleason 10. My PSMA scan showed the 2 areas of cancer but thankfully no bone mets. ... "

Just a FYI, in 2015 Dr. Gary Onik did Cryoablation on the right half of my Prostate with Gleason 10 and PSA = 14. No chemo and no radiation and no GL10 now 9 years later.

Mgtd profile image
Mgtd in reply to Tall_Allen

I have been meaning to ask the forum and you this question and now maybe a good time. I remember reading on the forum that PSA doubling should only count at a minimum PSA level. For example going from 0.04 to 0.08 is that a valid doubling time or does the PSA need to be higher to really be considered a valid double for decision making.

Thanks in advance.

Tall_Allen profile image
Tall_Allen in reply to Mgtd

Glad you asked! PSA Doubling Time (PSADT) as an indicator of progression has only been found to be valid for PSAs greater than 0.1 and when there are at least 3 measurements taken at least 3 weeks apart. Mathematically, it is computed by fitting the data to an exponential curve. MSKCC has a good fitting program:

mskcc.org/nomograms/prostat...

Mgtd profile image
Mgtd in reply to Tall_Allen

Thanks Allen I wrote that in my cancer notebook for future reference. I have one more dumb question regarding the definition of biological recurrence.

Does any PSA above zero indicate “biological recurrence”after either surgery or radiation?

How is it defined and at what PSA value is it used to determining if treatment options are necessary?

Tall_Allen profile image
Tall_Allen in reply to Mgtd

Biochemical Recurrence (BCR)

after prostatectomy= ≥0.2 confirmed

after primary radiation= nadir + 2.O

Mascouche profile image
Mascouche in reply to Tall_Allen

While the nadir + 2.0 is the official statement, wouldn't you say that in recent times nadir + 1.0 is considered by oncologist as worrisome? Mine booked me for a CT scan when my PSA was at 0.39 and for a bone scan when it was at 0.9.

I also remember reading in an article that most of the time for BCR, by the time you reach nadir + 2.0 it is pretty much a given that you have one or more metastasis somewhere.

Tall_Allen profile image
Tall_Allen in reply to Mascouche

Nadir+2 has not changed. However, it is entirely understandable to start investigating sooner if, for example, the nadir never got low (<0.5), there is no history of prostatitis, the PSADT is rapid, Decipher score is high, Gleason score was 4+3-10 and insufficient ADT or dose was used, there is reason to suspect occult capsular penetration, etc.

Mascouche profile image
Mascouche in reply to Tall_Allen

My nadir was "undetectable" at < 0.01 so it was low.

I had no history of prostatitis, my Gleason score is 8 (so less than 10).

However my PSADT was rising rapidly as in 2 months intervals between each test (once my T was slightly back) it went from 0.09 to 0.14 to 0.22 to 0.39 and then my MO ordered the CT scan.

That is probably why the doc wanted to investigated sooner, not even waiting for the PSA to be at 1.0. Thanks.

Justfor_ profile image
Justfor_ in reply to Mgtd

Totally nonsense originating from mathematically ignorant people. Even if they had proof of what they are claiming (absence of validation is of course no proof whatsoever), the whole setup makes people that possess basic knowledge of measurements wondering whether this is a collegian level prank. These pankers target laymen who can't understand the vast difference between 0.1, vs 0.10, vs 0.100. The trailing zeros are not there for aesthetics, they specify the precision of the measurement which should always be at least one order of magnitude higher that the cumulative measurement + reporting error. I will stop here because things like the quantisation, also dubbed rounding error, are beyond the understanding of the prankers and their innocent victims.

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

Thanks..... you just enlightened me on how to tip....

Good Luck, Good Health and Good Humor.

j-o-h-n

EdBar profile image
EdBar

I’m stage 4 Gleason 9, dx over 10 years ago. When my PSA became detectable again after early heavy treatment, I had a PSMA scan done once it reached 0.2. Thins happened twice over the past couple of years. Each time I treated it with SBRT and each time PSA retreated. It currently is 0.06. Dr. Sartor at Mayo Clinic told me we can continue playing whack a mole as long as the target areas and number of target areas is feasible. You can read my profile to see what I’ve done for treatment over the years.

Ed

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