Trying to decide a way forward

[Miccoman]

In view of the current US administration’s hostility toward scientific research I am discouraged about finding a clinical trial I can participate in, while the increase in my PSA has my MO s changing their tune to now pursuing SOC.

There are many factors that limit the trials I am willing to try, but at present the trials would have to be modified to accept me and that doesn’t look like it can happen any time soon.

So I am left with these choices (that I am aware of):

1. another round of Pluvicto

My local RO has said she would approve me for another round of Pluvicto.

2. Cabazitaxel

I did not do well on docetaxel so I am hesitant to do chemo again.

3. Abiraterone

An AR antagonist will not do anything to destroy the tumors.

12/23/24 PSA 17.10

01/27/25 PSA 25.2

02/10/25 PSA 32.2

Last PET scan Nov 18, 2024

Anyone have thoughts? Tall Allen, do you have an opinion?

[speranza10]

Many patients do badly with docetaxel but very well with cabazitaxel, if I were in your place I would take a trip to Jevtana sooner or later.

[Tall_Allen]

Where are your metastases- bone? lymph nodes? visceral?

[Miccoman in reply to Tall_Allen]

Bones only. Standard "Christmas Tree" pattern, much reduced after first round of Pluvicto.

[Tall_Allen in reply to Miccoman]

I suggest you discuss Xofigo combo therapies:

prostatecancer.news/2021/02...

[Miccoman in reply to Tall_Allen]

Thanks. Just adding that to my notes to discuss with my RO on Friday.

[rydemps]

I am confused as to what you mean about the current administration’s hostility towards cancer research? I work in cancer research in the pharmaceutical industry and this has never been raised as a concern. I would just hate for you to make decisions based on information that might not actually be factual.

[Miccoman in reply to rydemps]

As I stated, the hostility I see is toward all science. And how many people were just let go at NIH and CDC? You don't see that as having an effect on clinical trials trying to modify parameters or get other approvals? I am not comfortable, at this point, to committing to waiting until things settle down as that may now take years.

[rydemps in reply to Miccoman]

you do what you need to do but no, I don’t see that affecting clinical trials in a negative way. We’re only four weeks into this new administration. I don’t want to get political, but I would not jump to conclusions. There was/is a lot of mismanagement in the CDC and FDA for a very long time which trust me I saw first hand and this was already affecting trials for quite some time now. I’m hoping it will actually get better, not worse. Finally, the Fda is who has oversight over clinical trials not the NIH or the CDC. And just a sidenote, I don’t see any hostility towards science. All I see is different branches of science conflicting with each other and that’s normal.

[Miccoman in reply to rydemps]

Thanks for the inside view.

One of the deciding factors for me is how high I'm willing to let my PSA get before I do something I know will work, and that I tolerate well, while waiting for a clinical trial. A lot of things to think about right now, which is why I asked for input from the group. Forest for the trees...

[lokibear0803 in reply to rydemps]

hump? what hump?

[j-o-h-n in reply to lokibear0803]

That's exactly what Miss Loki asked Mr. Loki.

Good Luck, Good Health and Good Humor.

j-o-h-n

[xxxsmith in reply to rydemps]

I agree......

[TaylorMill]

“In view of the current US administration’s hostility toward scientific research…”

I have seen no hostility- you might reconsider other news sources. Plus I hope your MO provides a wealth of info and is receptive to exploring your treatment path at a level that is satisfactory to you. I appreciate the attention my MO has given me

[CountryJoe in reply to TaylorMill]

Wake up and read the news. Trump and Musk have cut millions of dollars for cancer research in order to give tax breaks to billionaires and corporations.

[P3Nav in reply to CountryJoe]

Not true at all. Trump and Musk have cut funding to wasteful ventures within each research department. Overall the better funding and better staffing will result in faster solutions...until we go back to a DEI based system again.

[pakb]

Here are a few articles with information that are causing some concern.

usnews.com/news/health-news...

gbmresearch.org/blog/federa...

breastcancer.org/news/execu...

nature.com/articles/d41586-...

[gsun in reply to pakb]

It may not be hostility to research directly, but some of the executive orders will affect it. Research will be collateral damage.

[pakb in reply to gsun]

Yes.

[j-o-h-n]

Here we go again..........Left against Right and Right against Left.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Miccoman in reply to j-o-h-n]

Oh, John, that's no way to go forward. If I remember my scouting drill instructions it goes, left, right, left, right,hup, ,hup, ,hup, there was a -- wait we weren't supposed to repeat that cadence! LOL

[j-o-h-n in reply to Miccoman]

LOL

You had a good home but you left, you're right, you had a good home but you left, you're right. sound off 1 - 2 sound off 3 - 4.... sound off 1 - 2 - 3 - 4 , 1 - 2 - 3 - 4 (sound off like you gotta pair) Road Guards Post left and right....... Hut, Hut, Hut ladies (Memories - counting cadence shit those were the days, next thing I know I'm gonna start crying ).

Good Luck, Good Health and Good Humor.

j-o-h-n

[Zdub83]

I am sorry for your situation. Have you looked at Fenbendazole? Controversial but maybe not harmful and worth trying?

[Miccoman in reply to Zdub83]

Was unaware of this drug. After Googling it, there is no way my doctors would allow it as they are teachers and don't stray from SOC. Thanks for the input, though.

[xxxsmith in reply to Miccoman]

This is one of the reasons Trump has cut research (for the moment)... there will be some collateral damage while Trump does some serious house cleaning at the FDA, but like the gentleman mentioned above, he has not seen the problem as yet. There is a lot of mis-information published by "less than stellar" cancer researchers to support those Big Pharma companies that prefer money over cancer treatments, but it will soon change with Kennedy in control.

There is a strong movement supporting Mitochondrial proteome research and other molecular cell issues including different cellular signaling issues to do battle with tumors. As it stands now is oncology fills you will enough poison to temporarily disable the tumor until you body screams in pain, then backs off before slamming you with another dose of poison..... enough said.

When Trump finishes the cleanup process, I suspect drugs like Fenbendazole and hyaluronic acid will move to the head of the class, as a cure for many cancers, which the animal studies have already proven. The following study proves my point ...

corporate.dukehealth.org/ne...

[Professorgary]

have you codidered BAT?

[Miccoman in reply to Professorgary]

I have not been offered that option. I have several MOs at various cancer centers as well as my local MO. That includes Memorial Sloane Kettering, Roswell Park and Weill Cornell so if it were an option, surely one of them would have proposed it.

[Professorgary in reply to Miccoman]

I see you stated your oncologists do SOC. My local oncologist is the same way however he has no problem with me trying it under the care of Dr. Samuel Denmeade at John Hopkins.

[Derf4223]

Miccoman You asserted that the current admin is against "scientific research." That is way too broad of a brush. My take is they are ripping off a lot of bandaids to see if the creepy/crawly underneath is "woke-related" as opposed to objectively valuable research. And that any such research will see funding resume.