Looking for Hope

[Jshaw916]

My dad had his second Pluvicto treatment yesterday. His PSA is still rising. The doctor at University of Chicago is not happy with his bloodwork. He may try something else. Before Pluvicto he had Docetaxel and his PSA rose right after he stopped chemo. He also had target radiation that did nothing either. He did so well for years on Lupron, then Zytiga. I feel like it’s getting more aggressive and we are running out of options. What treatments are out there that may work?

[Tall_Allen]

Any info from metastases biopsy?

[Jshaw916 in reply to Tall_Allen]

He had a PSMA scan in January/February. He had 8 metastases in his bones and lymph nodes.

[Tall_Allen in reply to Jshaw916]

So he has not had any metastases biopsied? You may want to request that.

[Jshaw916 in reply to Tall_Allen]

Thank you. Yes nothing has been biopsied as far as I know. I know he did light up on the PSMA scan.

[dhccpa in reply to Jshaw916]

A lot of docs don't seem to know about doing a biopsy of a tumor met. Not how to find out. Mine doesn't. Be prepared.

[robobob7777 in reply to Tall_Allen]

Hi TA. Is it fair to say until you get at least one mets area biopsied, it is possible that it is not mets?

[Tall_Allen in reply to robobob7777]

If it responds to hormone therapy, or a high SUVmax on a PSMA PET, it is a met.

[MarylandGuy]

Does he have the BrCA2 mutation? That can mean a PARP inhibitor might work.

[Jshaw916 in reply to MarylandGuy]

He has not been told he has. Thank you

[MarylandGuy in reply to Jshaw916]

Make sure he has been genetically tested. That is important.

[Hidden]

BAT is a possibility if he has no pain.

[WisdomSeeking in reply to Hidden]

It's important to read this discussion about BAT: healthunlocked.com/advanced...

[Hidden in reply to WisdomSeeking]

I am doing BAT + ARSi, PSA 0.7 after 56 months - it works beautiful

[Jshaw916 in reply to Hidden]

That’s amazing!

[dhccpa in reply to Hidden]

4.5 years on BAT? That's the longest I've read of.

[Hidden in reply to dhccpa]

No, the last 15 months. I follow the variable sequential STEP-UP trial scheme. The last three months BAT + Olaparib , at the end 4.1 in PSA. After 17 days of Daro down to 0.7, expect to come down to 0.2 in the next month. Then AR will gain making the cancer cells resistant, then two months of BAT before Daro - over and over again.

[dhccpa in reply to Hidden]

Thanks. Sounds very specialized. Good luck with it.

[Jshaw916 in reply to Hidden]

He has zero pain. I will look into this

[Shamrock46]

So sorry about your dad. I found that one of the hardest things about a disease like this is balancing things like hope vs. reality. It seems like he has been battling for some years now and one of the things that our MO used to say was that the drugs/treatments work until they don't because the cancer always finds a way to outsmart them. Even worse when it does recur, as it did twice with my late husband, it comes back more aggressively, even to the point that the cancer cells find a way to create their own testosterone. While you should never give up on hope, it's important to talk to your dad's doctors about a real prognosis. You said that the doctor didn't like the results of blood work so find out if other factors are at play. Do the tests suggest that other organs are being compromised like the liver? Are other symptoms starting to appear or worsening side effects? Your dad also has the option to explore the possibility of palliative care that can help him and your family deal with all this and you could ask you doctor if that's a viable choice at this time. Wishing you all the best as you try to find the best way to help your dad!

[Mgtd in reply to Shamrock46]

That is excellent and sage advice. Palliative care can be critical at this stage. I really liked the way you blended the need for hope and facing reality. Beautiful and artful piece of advice and writing.

[Jshaw916]

thank you for your kind reply. No organ involvement as of right now. I think the doctor was hoping he would respond quicker to Pluvicto.

[Jshaw916]

He is not.

[dhccpa]

Which protocol are you using? There are many of them.

[lgutman]

I highly recommend using an AI like perplexity. I have the paid version and set it up to use Claude 3.0 and searched on academic mode. I typed out my dad's entire case, uploaded all of his details including the PDFs of his petscans, CT scans, and asked it to help summarize and analyze the patient's case. It reviewed everything and then I asked various options and followup questions. Approach it with the AI as you need help with a case. If you read my bio you will see my dad's case and we are at the point that hormone therapy isn't working, and we will know how bad it is this week. We don't want to do chemo based on how frail my father already is and while we may try Pluvicto I don't have great faith in what I have recently read. Multiple people on this site recommended I read "Being Mortal" especially chapters 5-8 and I listened to the audio version. It has really reframed my thought process on the next 3-6 months. I hope you find the right path for your dad. My heart goes out to you and your family.

[Mgtd in reply to lgutman]

Glad you found the book worthwhile!

[swwags in reply to lgutman]

What did the AI tell you?

[lgutman in reply to swwags]

It is hard to summarize as it was a back and forth asking for additional thoughts. Essentially, it said my Dad's prognosis is very poor. The best options moving forward are chemo and Pluvicto, but given the frailty and his blood work it might be worth looking at quality over quantity as his condition is very guarded and it was important to talk with the palliative care team. Additionally, when pressed it said that while the goal of Pluvicto is 6 doses in reality in the greater than age 75 the average amount of doses before it is stopped is 2-4 and when pressed further for on the AI it felt that my father would more likely not respond to Pluvicto. This plus the book has made me wonder are we better off stay on Zytiga and having it block some (not all) of his cancer, and maintain his quality of living for now and squeeze as much as possible out of today with something that is known, rather than something that is unknown and could possibly do more harm. My dad's PSA doubling time as of the last blood draw was 1.6 months, however, I suspect on this week's blood draw that time will speed up. On Xtandi when it failed it got to 3 weeks doubling before we switched. I will also say when we started Zytiga the AI said he would have little or no benefit and it would fail quickly (which it did, one blood draw drop, weeks later a tick up.) When my MO told my dad that the Zytiga could work for weeks, months or years, I stopped him and said "can we just be honest here, you know my dad's Zytiga isn't going to work for months or years, and when you tell him this you give him false hope so can we please talk about what comes next. I told him I ran everything through AI and it said that there would be cross resistance in this third hormone blocker given my dad's case. I have found our MO to not be forthcoming about information or the situation at hand. I have asked my Dad's palliative care doctor to be 100% honest with my father about what is going on and what the next 3-6 months look like and the pros and cons of all scenarios. The "Being Mortal" book gave an interesting statistic that for those patients who instituted hospice care earlier, they lived longer than those trying to institute different types of treatments. I wish that we did chemo first, or a different treatment first when my dad was at his best, because honestly chemo is just not an option for my dad with how frail he is. He has had so many falls and can't walk without a walker. My dad is with the VA and I think we don't need to stop Zytiga to start hospice. I would like to use it to help my dad live the best life today. If you do use perplexity to look at your dad, every once in a while it misses something and I have to ask it to re-read the file. Feel free to send me a note on chat if you want to talk more off of the board.

[Adventure18]

I would definitely be interested in your protocol. I’m doing multiple alternative protocols. Thanks.

[Adventure18]

The book How to Starve Cancer may help. I found it useful.

[j-o-h-n in reply to Adventure18]

The book "How to Starve my Doctor" was even more useful...

Good Luck, Good Health and Good Humor.

j-o-h-n

[Mw921000000]

Have you tried Radium 223? Carboplatin + docetaxel combo? Just carboplatin chemo?

[diatom]

look up clinical trials for actinium 225.

I was accepted but decided to try Pluvicto first.

My PSA went up after the first tx but declined after the second tx. Will receive third round in four weeks.

[OhioGuy2]

My PSA barely dropped after my first and second Pluvitco treatments. It finally dropped significantly after the third. Be patient and hope for the best.