On treating micro-metastatic disease - Advanced Prostate...

Advanced Prostate Cancer

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On treating micro-metastatic disease

John347 profile image
29 Replies

I watched a video posted by PCRI recently on YouTube. In the video entitled "Treating micro-metastatic disease", Dr Mark Scholz mentioned that undergoing one year of ADT is sufficient post radiation. Thereafter just monitor the PSA for any rise, and use PSMA PET scan to locate any cancer and to radiate whatever spots of cancer that are found.This May I will reach the one year mark of my ADT and seriously considering stopping the ADT because of the side effects... fatigue, muscle loss, forgetfulness, loss of libido, etc.

What do you guys think?

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John347
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29 Replies
Big_Mcc profile image
Big_Mcc

Dont stop your ADT. I had radiation and 30 months of ADT. All was ok and the consultant stopped the ADT early (was supposed to run 36 months). After 12 months off ADT my PSA started to rise continuously from 0.04 until above 4 they gave me a psa pet/ct scan which showed widespread mets above and below my diaphragm. Was then given 6 rounds of Docitaxel. If you get that you will think nothing about your ADT. Play it safe. Not worth taking risks you don't need to take.

6357axbz profile image
6357axbz in reply toBig_Mcc

Big Mcc, good advice.

I’m am very surprised your doc allowed your PSA to rise above 4! Especially since you can get an effective PSMA scan at PSA levels between 0.5 and 1.0. Allowing you PSA to get to 4+ could have contributed greatly to the resulting wide spread Mets.

Big_Mcc profile image
Big_Mcc in reply to6357axbz

Im in the UK. Its the NHS guidelines here or it was at that time. Nothing I could do except wait & watch it climb and pray I wouldn't have to wait years to get a scan. Sadly we, in the UK, are all in the same sinking ship.

Nfler profile image
Nfler

I Couldn’t stand the ADT so eventually got off after 7 mo and in the sixth month starting taking ivermectin and psa has dropped consistently (1.95 - .65) for over a year now. People are hung up on the ADT but I believe the sooner one can get off the better as you mentioned w the detrimental side effects, especially the one pertaining to the heart. Most of the time ADT only works for 2️⃣ years then the cancer cells find a way to circumvent and come back with a vengeance, more virulent than ever n harder to kill. Amazingly though when they become hormone (castrate) resistant the ivermectin has shown to reverse this and become hormone sensitive again, so for those people that are adamant about using ADT they still can. Really like Dr Scholz and he tries to keep the audience informed w the latest therapies n treatments… good luck as there are many ways to fight this dreaded disease..😊😇😇😎

GP24 profile image
GP24

I do not think stopping the ADT after 30 months instead of 36 made the difference. This is a Phase III trial with found that 18 months is sufficient:

ascopost.com/issues/april-1...

Nfler profile image
Nfler in reply toGP24

I was thinking the exact same thing, 30-36 months didn’t make a bit of difference, matter of fact castrate resistance usually happens after 24 months…

Tall_Allen profile image
Tall_Allen

The way you and others have been misinformed is a good reason to not get info from youtube videos. It is often misinformation that you can't correct because sources are lacking.

The duration of adjuvant ADT depends on the type of radiation and the risk category.

prostatecancer.news/2022/01...

prostatecancer.news/2020/09...

Treating PSA with MDT is no substitute for treating the cancer with systemic therapy.

prostatecancer.news/2020/07...

Jewelrylady profile image
Jewelrylady in reply toTall_Allen

I read the PREDICT trial criteria for participation and it said no bone metastasis. Why do you think they would exclude this? Is it that bone metastasis is too high risk?

Tall_Allen profile image
Tall_Allen in reply toJewelrylady

When there are bone metastases, it is no longer high risk localized ± pelvic lymph nodes prostate cancer (which is what the PREDICT trial is trying to cure), it is newly diagnosed metastatic prostate cancer.

For newly diagnosed metastatic PCa, triplet therapy is the standard of care with prostate debulking if there are 3 or fewer bone metastases. Slowing progression is the goal.

Jewelrylady profile image
Jewelrylady in reply toTall_Allen

Thanks for clarifying that!

Cactus297 profile image
Cactus297 in reply toTall_Allen

I think my son falls into the category of high risk localized pelvic lymph node cancer. Do you have information or a link to the PREDICT trial I can read and send to him? Thanks so much as always.

Tall_Allen profile image
Tall_Allen in reply toCactus297

clinicaltrials.gov/study/NC...

Cactus297 profile image
Cactus297 in reply toTall_Allen

Thanks so much. I appreciate it. Will give it to my son.

Tall_Allen profile image
Tall_Allen

It was OK until he started talking about recurrent patients about halfway in. At that point he started substituting his own anecdotal experience for trial data. It is pure nonsense that he would never write in a peer-reviewed journal article. It demonstrates why patients should never take advice from youtube videos (unless they are linked to actual trial data). It sounds true, but it is really just poorly reinforced opinion.

John347 profile image
John347 in reply toTall_Allen

Dr Scholz is a well respected oncologist with more than 30 years experience treating prostate cancer patients. I have watched scores of his videos since my diagnosis nearly two years ago and have learnt a lot.It seems he has kept abreast of the latest developments in the field of prostate cancer research. If he were my personal oncologist, should I reject his advice because he is not able to back up his opinion with reference to peer reviewed journal articles?

Nfler profile image
Nfler in reply toJohn347

My thoughts exactly, though I don’t agree w everything Dr Scholz says, he is pretty good and a licensed medical oncologist, ta is not, js…

Tall_Allen profile image
Tall_Allen in reply toJohn347

I have met and like him. But even he can say unsubstantiated misinformation on a video, which is my point. It seems from that video, that he has not kept abreast of the latest developments. He has a very large practice that he expands by marketing to patients and he is not hold a position with a teaching hospital, where he would be required to do innovate research and publish about it. Perhaps he doesn't have time to keep up. I have never seen him present to his peers at ASCO or similar oncologist gatherings. That is where you see the true stars of the field. When you say "well-respected" - by whom? The patients he markets himself to?

"If he were my personal oncologist, should I reject his advice because he is not able to back up his opinion with reference to peer reviewed journal articles?" Yes! The good ones can, and will make clear that when they are trying something experimental, that it is experimental.

Put yourself in an oncologist's shoes for a second. All day you see patients you cannot cure. You probably went into the practice because you are highly empathetic. You see a lot of patients and spouses break out in tears and are very anxious. There is a great temptation to make unfounded claims, to go beyond the science. I think a doctor has to respect his patients enough to trust them with the truth. Videos remove that face-to-face interaction, which is vitally important. One can say anything on a video - no one (but me, apparently) will challenge unfounded assertions.

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

Damn it .............again... you took the words right out of my mouth...........

Good Luck, Good Health and Good Humor.

j-o-h-n

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

Next is the foot...

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

(HFMD) Now stop right there!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

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

Hoof it Up!!

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

Don't be such a heel....

Good Luck, Good Health and Good Humor.

j-o-h-n

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

Like this?

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

Time for you to "toe the line"......

Good Luck, Good Health and Good Humor.

j-o-h-n

John347 profile image
John347 in reply toTall_Allen

I don't think what he is proposing to his patients is anything unusual or "experimental". He is merely proposing that after 6 months or 1 year of ADT, the patient should monitor his PSA with blood tests every 3 or 6 months, and if there is a significant rise, to do a PSMA PET scan to locate any mets in the body and to radiate them.

His main concern seems to be maximizing the quality of life of the patients.... while the peer reviewed articles you cited seem to focus on maximizing the length of life of the patients.

You are advocating for a longer duration of ADT of at least 2 years. Ironically this could shorten the life span of the patients....

"Numerous studies have found increased incidence of myocardial infarction (MI), stroke, arrhythmia, hypertension, and sudden cardiac death (SCD) in men receiving ADT. Cardiovascular disease is already the second leading cause of death in men with prostate cancer."

I will provide a link for the article where the above quote is taken from below...

John347 profile image
John347 in reply toJohn347

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

Tall_Allen profile image
Tall_Allen in reply toJohn347

What he advocates in that video is replacing hormone therapy with MDT to PSMA-identified metastases. There are no data showing it doesn't harm survival. We know ADT improves survival, and forgoing it is risky.

Certainly, there are QOL and minor health risks to ADT. And these should be discussed with each patient. But to broadly recommend an unproven protocol is unconscionable.

Here is what has been proven to work in recurrent patients:

prostatecancer.news/2022/09...

prostatecancer.news/2023/05...

As you see, it involves hormone therapy intensification for a brief time. Replacing it with his imaginary solution of MDT may cause harm. If a patient wants to do MDT in addition to following a proven protocol, there is no harm.

Nfler profile image
Nfler in reply toJohn347

As per John’s saying dammit… again you took the words right out of my mouth…😁

Rickmartin1948 profile image
Rickmartin1948

I tend to agree with you, and specially in USA the PET CT PSMA records are not very long. In the countries wuere it has been routinelly used for the last years, the Doctors are much more confident at reducing ADT periods with frecuent PET scans mnonityoring the development of mets. Actually there is a new trend of trying to use L177 earlier on.

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