Updating my husband's journey, hoping it helps others - any words of encouragement are welcome, but please only positive comments

[SuppWife]

The first part is in my profile.

It makes me feel vulnerable to share, but we have benefited enormously from reading others' stories, so I'm sharing.

UPDATE:

8/18/21 PSA =0.45

9/6/21 last dose Orgovyx

9/7/21 First Eligard 3 month shot

9/17/21 PSA =0.78

10/18/21 PSA =1.28

Nov not tested

12/18/21 PSA =5.9

2022

Nubeqa started 1/6/22

01/20/22 PSA =2.14

03/03/22 PSA =0.64

4/20/22 PSA =0.27

6/01/22 PSA =0.18

7/19/22 PSA =0.10

8/26/22 PSA =0.05

11/04/22 PSA =0.03

12/21/22 PSA =0.04

02/08/23 PSA = 0.06

03/20/2023 PSA=0.26

Started at VUMC w Schaffer

4/25/2023 PSA: 1.31

5/4/23 ALP 104

5/10/2023 PSMA scan showed mixed response - decreased uptake of previously seen RP and iliac LN, a few new sites of nodal disease

6/19/23 - Aug 2023 Provenge started

6/19/23 PSA 11.73 ALP 101

6/19/23 Lupron 3 month dose

7/17/23 last dose Provenge

Aug 2023 PSA rise 25.6

8/8/2023 CT CAP and NM bone scan show slight disease progression with increased LAD and new focus of radiotracer uptake in 5th rib

Aug 2023 consult w DrDenmeade re BAT

Aug 2023 discontinued darolutamide in preparation for BAT

9/7/23 PSA 74, ALP 132

9/13/23 CT CAP and NM bone scan show stable disease / uptake from prior. Multiple osseous sites

10/4/23 PSA 70.15, ALP 138

Started BAT - October 2023 - December 2023 received testosterone cypionate 400 mg monthly while continuing Lupron

11/1/23 PSA 71.27, ALP 159

11/30/23 PSA 57.38, ALP 185

12/28/23 47.73, ALP 221

1/23/24 PSA 128 T 538, ALP 284

1/18/24 CT CAP shows increased RP LN and new multifocal osseous lesions. CT confirmed small segmental PE in RLL .NM bone scan shows increased uptake new compared to prior (9-2023) calvarium, shoulders, ribs, sternum, C, T and L spine, pelvis and proximal femurs. Rib lesions increased in size and intensity from prior. Doppler Venous lower extremities no DVT

1/29/24 Darolutamide resumed

2/5/24 PSA 88, T 171

2/19/24 PSA 98, T 128, ALP 381

3/4/24 PSA 209, T 61, ALP 412

Going for scan to set up SBRT for painful mets today which will be done after trip to Mayo to see Sartor (3/12/24)

Dramatic changes in bone involvement from September to January. Went from mostly nodal disease to widespread mets throughout skeleton.

Frustrated more wasn't suggested earlier. We only saw NP during BAT treatments at VU, T was not measured. PSA was going down (from 71 to 47), but Alkaline Phosphatase was going up and we brought it to the attention of the NP but were essentially dismissed, since PSA was falling.

It's frustrating when you go in to your doctor informed and asking good questions but basically being told to wait till you have more disease.

He has not had chemo.

We've been researching AC225 overseas, but very expensive.

Hoping for good direction from Dr. Sartor next week.

If you read it all, thank you.

[God_Loves_Me]

There is AC225 clinical trial going on here : xcancer.com/contact-us ,

Locations : Omaha, NE 68130

there is another trial also good : pubmed.ncbi.nlm.nih.gov/378...

One questions - can you do pluvicto first than AC225 ? the reason I am asking you because i had similar discussion with clinical dr. Here is her asnwer : Go for 2 dosage of light dosage of chemo then try pluvicto than do immunotherapy

[SuppWife in reply to God_Loves_Me]

Thank you! We spoke to them in Omaha this Monday (great folks) and told them we're headed to see Sartor. Got on Dr. Nordquist's schedule for later in the month, just in case.

[SuppWife in reply to God_Loves_Me]

He did Provenge this past summer. It seemed to slow the PSA climb, but then PSA bolted between December and January.

[God_Loves_Me in reply to SuppWife]

One questions - can you do pluvicto first than AC225 ? the reason I am asking you because i had similar discussion with clinical dr. Here is her answer : Go for 2 dosage of light dosage of chemo then try pluvicto than do immunotherapy

[SuppWife in reply to God_Loves_Me]

"Go for 2 dosage of light dosage of chemo then try pluvicto"

This is what we discussed with his doc at Vanderbilt, but it never went past discussion. Seems like a good plan.

[NickJoy]

Thank you for posting this useful information. Hope you find a place with reasonable price AC225 - Turkey?

[SuppWife in reply to NickJoy]

Thank you! Turkey is one of the places we're looking. It does look like it's less expensive, but we're still looking at 20 to 50k, I think.

[SuppWife]

Thank you! Turkey is one of the places we're looking. It does look like it's less expensive, but we're still looking at 20 to 50k, I think.

[God_Loves_Me in reply to SuppWife]

Can you please share information? I might need to note down

[SuppWife in reply to God_Loves_Me]

I have only googled but have no good info to share. When I do I will share links etc.

[JohnInTheMiddle]

Hi SP. Your very detailed diary of your husband's journey was much easier to read than most. I think it's a surprise even a shock for people on the outside to discover how complicated metastatic prostate cancer therapy management and health management is. It's a huge cognitive load as they say.

I have two questions if you don't mind:

1. I would love to be on Orgovyx but unfortunately up in Canada we can't have it yet (it is a much better cardiovascular profile then Lupron/Eligard). Why are you switching?

2. Your husband has not had chemo apparently. I've had six sessions of Docetaxel, with few side effects and very positive results. I'm just an anecdote but the research is also very strong that Docetaxel chemotherapy is a fundamental therapy in any metastatic prostate cancer program. Is there some reason why your husband with everything else you are doing!! has not had chemo?

Thanks for reaching out to this community. It is truly very helpful and a blessing. I looked forward to engaging with you for years going forward! And in the meantime total success in every endeavor for you and your husband on this health journey!

[God_Loves_Me in reply to JohnInTheMiddle]

Agree with point 2.

[SuppWife in reply to JohnInTheMiddle]

Hi, JITM!

Isn't that the truth?? It's extremely complex.

Great questions.

Dr. Sartor was dubious as to how much better Orgovyx is for cardiovascular risk and said his go-to is Eligard, so that's what he did. When we went to Vanderbilt he was switched from Eligard to Lupron because that's what they routinely use. I requested Firmagon for my husband from the beginning (back in 2018) because I'd read it was a superior drug, particularly for cardiovasular health.

Also we got Firmagon shots for him last month instead of Lupron in hopes it would more quickly drop his testosterone (still at 61 yesterday, shots were on Feb 20th).

I'm very encouraged to hear your experience with Docetaxel. That may be what we're doing next. We've not been directed with any urgency at Vanderbilt, which has been puzzling, even with his rapidly rising PSA and new bone activity. It's frustrating because he had very low disease burden six months ago and now not so much.

[JohnInTheMiddle in reply to SuppWife]

There seems to be "a little of this and a little of that" going on here.

I'm on a standard triplet therapy: ADT + ARPI + Docetaxel. It has a recipe. It's not subject to the whims of a doctor ("not really sure Orgovyx is everything it's cracked up to be").

I was diagnosed with a surprise metastatic stage 4 prostate cancer with three seriously compromised vertebrae and an emergency situation because of pressure by cancerous invasion of the spinal canal on my spinal cord.

Lots of mets on ribs and hips and some lymph nodes. By a miracle no organ involvements. (As an aside which I have written about elsewhere the whole thing started with a backache that progressed to excruciating pain - because my doctor was prejudiced against PSA testing and so when I was diagnosed I was already metastatic.)

So fortunately I had an MO team that said "we're going to follow the recipe". The latest modern up-to-date much better recipe! A recipe derived from massive clinical trials of the highest quality. "Triplet therapy for you!". (1) Firmagon ADT, because it's an emergency and you already have gait problems. (2) Advanced Abiraterone ARPI. And (3) Docetaxel to mess with all those PCa mitochondria.

My PSA dropped from over 1700 at diagnosis (not a typo) to zero by the end of the chemo (don't forget the fasting protocol around the infusions).

I was overwhelmed by your husband's history but I think he is not "de novo". Which is a criteria typically for triplet therapy. But my reason for sharing my own story here is that it is a model of following a recipe and following the leading results of research.

I was inspired to share this with you because your husband has not had chemo but then I was surprised to learn that there was no serious reason why this had not happened.

And it seems you have visited different doctors. And they all have their own idea. And you're thinking of going to Turkey. And let's not forget exercise (as life extending therapy not just for quality of life).

I have to wrestle with motivation or even depression sometimes; we still have a teenager at home. The ADT apparently contributes to this. All this is hard work, even overwhelming.

And I read a lot of the posts on this forum and sometimes it seems like there's a lot of playing whack-a-mole. Even if the motivation is understandable, it doesn't seem that this is a good approach. I don't want to be my own medical oncologist. I want to be able to ask good questions. I trust there are people out there with good recipes! By the way, I think your research on Firmagon was very good! I'm still on it despite enticements by one of my doctors to move to Eligard because of convenience!

I realize this reply has turned into a bit of 60's style stream-of-consciousness. I hope there might be some value in it for any readers and that it is not unwelcome.

[SuppWife in reply to JohnInTheMiddle]

Agreed. Unfortunately when husband's PSA started creeping back up last April we contacted Dr. Sartor for follow-up, but he was in between Tulane and Mayo and suggested we find local care at Vanderbilt for scans and staging. Things changed so quickly and here we are. It's hard to find a good team, especially close to home.

[SuppWife in reply to JohnInTheMiddle]

It's also partly because of the year he was diagnosed. At the time (2018) I don't know if triplet therapy was being done routinely. He might have been a great candidate for it. He had a 34 psa upon diagnosis but no evidence of metastasis with the traditional bone scan, which was all he could get at the time. Pylarify was just becoming available. I asked for it prior to his starting ADT, but we were told NO because all the doctors assumed he was metastatic since his PSA was so high. It only went to 14 after surgery. He had a big tumor and struggled a year with incontinence, which also partially prevented pelvic salvage radiation.

What might have been. =/

Really appreciate your input.

And, yes, I agree. If it were up to me I'd skip Orgovyx (expensive and another pill to keep up with) and stay on Firmagon. Monthly shots were painful and made husband feel fluish several days, but I definitely trust it more. This last new dosing of Firmagon was a loading dose, so two shots, and one of them caused him a LOT of pain. He's gun-shy now and doesn't think he wants to continue with Firmagon, and may go back to lupron.

[JohnInTheMiddle in reply to SuppWife]

How many insights and twists and turns!

1. ADT CHOICES - I'd prefer Orgovyx over Firmagon because it seems possibly better better at doing what it does according to the studies. And there's the pill popping convenience and avoidance of injection. They are both the same technology as a GnRH antagonists (Lupron Eligard etc are GnRH agonists - in other words very different). Any doctor who recommends one over the other for convenience and doesn't mention that it's a different technology is not doing their job.

2. BETTER FIRMAGON INJECTIONS - No wonder your husband is gun shy about Firmagon injections. This is not uncommon. And what a lot of people don't realize is that has to do with the competence and experience of the nurse giving the injection. I've read and highlighted the instructions. Including making sure to prevent infection. There are about 20 steps!

I finally realized that some nurses were giving me the injection for the first time and someone had just casually explained how to do it and they really didn't know what they were doing. It's very important that the injection go only into the fat and not into a blood vessel or muscle tissue! (Interestingly there are some people on long-term Firmagon, oddly mostly in Australia it seems, and because these individuals travel quite a bit they've learned how to do the injections themselves! My wife has done some infection prevention injections for me related to chemo but I wasn't up for the own Firmagon injection.)

In my experience there is a quality control issue on Firmagon injections, at least in the healthcare system with which I am familiar. I suspect it's widespread.

The good news is that with proper discipline and quality control it's possible to get a good Firmagon injection every time! I have now made special arrangements where an experienced nurse comes to my home every 28 days. The only site reaction is a slight itchiness a swelling and a slight redness. No pain. Of course then I have a low fever and extreme fatigue for about 36 hours but this is always been the case.

3. TRIPLET THERAPY IN 2018 - the only people on triplet therapy in 2018 were in trials, to my knowledge. Even in my case in 2022 it was not standard of care in my area and had to have access under a special program. Even now adoption is not even across different jurisdictions. To me though one of the key layperson's learnings from the whole idea of triplet therapy is that sequential failures of different therapies- "try one thing and then anotherx - is significantly inferior to piling it all up up front and pounding away at prostate cancer and beating it down at the beginning.

[CAMPSOUPS in reply to JohnInTheMiddle]

All good points and kind of you to help her.

Keep in mind you and I were fully metastasized at diagnosis. Triplet therapy is definitely recommended now with that dx (peace trial).

The poster though is essentially in a reoccurrence situation. So the history does have one or two at a time treatments and even a period of no treatment while watching and waiting.

[JohnInTheMiddle in reply to CAMPSOUPS]

Your comment about the difference between SuppWife's husband and ourselves is really on the mark. The recipe is clear if you are, as you say, fully metastasized at diagnosis. Not so much if not the case.

[SuppWife in reply to JohnInTheMiddle]

Absolutely agree about the shots. Our experience too was often the nurse was not skilled at administration. I wondered about quality control issue, too! It’s interesting to me you’ve had the same thoughts.

I’m hopeful Dr. Sartor will guide to the next best step for him. Would give anything to have the last six months back.

[pakb in reply to JohnInTheMiddle]

My husband was diagnosed metastatic de novo in 2017. Chaarted and stampede had just finished and recommended doublet therapy. ADT plus Chemo or ADT plus Abiraterone if chemo wasn't recommended due to age/health. Chemo plus ADT were my husband's first line of treatment and then continued ADT adding Abiraterone after chemo ended. My husband has never had radiation except spot radiation to one spinal met in 2021.

[JohnInTheMiddle in reply to pakb]

Pakb - I just read your husband's treatment bio and it is fantastic and inspiring! You must have been one of the first people to take advantage of the therapies recommended by STAMPEDE and CHAARTED trial results. And now your husband's PSA drops a little more! I think your husband is one of the data points for the recent comments that triplet therapy endpoints haven't been reached yet so that the statistics have had to been updated to 6 years from 5 years in terms of a certain percentage of survivals.

It's also interesting that your husband had a single spinal MET irradiated - and seem to be just fine thank you very much! I have three serious spinal METS and knowing about your situation is very encouraging. I'm assuming that it was detected by PSMS PET scan? I'm curious if there were any blood markers that went up as well, especially obviously PSA? Or maybe not?

I know your husband is on XGEVA and also has had some brain fog? Both being side effects of the ADT of course. Have you looked into the whole unresolved question of low-dose transdermal estradiol as safe estrogen add-back as a solution to this?

I see your husband is very active. Is he following a program of exercise may I ask?

Thank you so much for sharing your inspiring note! And continued success for your husband!

[pakb in reply to JohnInTheMiddle]

Thank you💙 Yes- he was very early on treatment from those studies. I researched local MOs that specialize in Pca especially at teaching hospitals. We are fortunate to be outside of Philadelphia and also a short drive to NYC if needed. His oncology rlteam is very good at being up to date and thinking outside of the box if necessary. And we felt heard by them- they listen to us. Especially if I ask about something I've read on this forum. He's not had a PSMA scan- on his regular scans that year the L4 met shone a bit and his MO had us discuss with RO getting in front of that met by spot radiating it. It worked and that met hasn't shone again. His annual scans are in April this year so we will see. Scanxiety is beginning!

He works out- but not on a true plan. Our daughter plays lacrosse in college and helps us with weight workouts a few times a week. He's also always been an active oerson and continues to not be very sedentary in normal days- in the yard, with our dog, he works full time, coaches HS lacrosse, etc. He also has an amazing attitude. He's very positive.

He did just have to pause Xgeva due to a bone opposing up in his mouth- oral surgeon says it's a dead bone that won't require surgery but pausing Xgeva until resolved.

I have researched the estroidal- but we haven't acted yet. Planning to bring that up with his onc team after scans!

[JohnInTheMiddle in reply to pakb]

So many wonderful things! Including a new word to me "scanxiety"! I experience PSA test anxiety about every 6 weeks now but have never heard of a cool name for it.

You may be already up on top of it but here is my sort of curated list of posts here on the Estradiol question (you might have to scroll up and down to see other comments on the full thread):

healthunlocked.com/advanced...

healthunlocked.com/advanced...

healthunlocked.com/advanced...

healthunlocked.com/advanced...

P.S. you might not have noticed the misspelling in my previous post but I corrected it 😂

[pakb in reply to JohnInTheMiddle]

And I agree- I don't think the stats are still being collected for triplet. I was told he had 12-18 mos at diagnosis. But back then there weren't a lot of long term stats on Chaarted and stampede. So I'm sure it's the same with triplet.

[CAMPSOUPS in reply to SuppWife]

Next appt. with Dr. Sartor will be a key I think in deciding on best approach. You can probably breathe a sigh of relief after appointment.

[SuppWife in reply to CAMPSOUPS]

Thank you. I am hopeful. 🙏🏻

[God_Loves_Me]

I learnt about new therapy just sharing here may be help you out : Terbium 161 for Targeted Radionuclide Therapy

[SuppWife in reply to God_Loves_Me]

Thank you! I’ll read about this.

[Gdheals]

Sorry to hear Just remember, less is sometimes more. All this radiation and medications can kill you faster than the cancer. Sorry you have to suffer through this maze of treatments.😢

[SuppWife in reply to Gdheals]

Thank you. We both try to stay positive. I appreciate your message.

[Tall_Allen]

Let us know what Sartor says. You are seeing one of the best.

[SuppWife in reply to Tall_Allen]

Thank you. Can’t wait to get there.

[spencoid2]

Check clinicaltrials.gov for trials with Actinium. There aren't many but likely to be more soon.

[Dachshundlove]

thank you for sharing your story and willing to be vulnerable here. You and your husband have chosen a path that felt right to you. Cancer is a tricky beast. What works for some doesn’t work at all for others. It’s random in the way it responds to treatment. Because of that, large well designed clinical trials can be been instructive to doctors. And, people can follow the protocols of “best practice” and still have bad outcomes. And they can follow unconventional paths and have good outcomes. Like life, Luck is involved too.

I hope you guys find a new path forward that reverses the current trend. Metastatic cancer treatment is a roller coaster.

As a spouse going through this, it is incredible how much responsibility we feel for the care of our husbands. It’s natural, and it’s depressing and exhausting when the dial feels like it’s moving backwards. We’ve had some high high and low lows in this house. My husband is currently doing well. He had 2 types of chemo/ radiation/ lupron/ abiraterone. With the abiraterone after chemo and during radiation. It’s been 5 years in May.

He now has some PSA returning so his pet scan interval is being decreased.

You are seeing a Dr who will figure out a productive strategy!

[SuppWife in reply to Dachshundlove]

Thank you so much. It really lifts me up to be able to connect with other caregivers. 🙏🏻

[YC22]

have you tried THC and CBD? What is his diet?

[dhccpa]

Thanks for posting. I never liked Vanderbilt when I lived there.

Fascinating about BAT. Please keep us posted.

[SuppWife in reply to dhccpa]

Thank you! I sure will.

[God_Loves_Me]

recently I learnt about this clinical trials and showing promising results. Already talk to dr and he believes it is good options.

Here is press release : ir.ambrx.com/news/news-deta...

Importants notes if you do not want to open link :

Multiple efficacy endpoints demonstrate consistent and promising anti-cancer activity at therapeutic doses of 2.0 – 2.88 mg/kg (Cohorts 6-8) in heavily pretreated patients (median of 4 and maximum of 13 prior lines of therapy):

52% (12/23) of patients experienced a ≥50% PSA reduction

81% (17/21) of patients experienced ≥50% circulating tumor DNA reduction

50% (3/6) of patients with prior PSMA-targeted radionuclide therapy (TRT) experienced a ≥50% PSA reduction

50% (2/4) experienced a >30% reduction in target lesion(s)

Also acquired:

Johnson & Johnson to Acquire Ambrx, Advancing Next Generation Antibody Drug Conjugates to Transform the Treatment of Cancer

Also FDA Notes :

The FDA has granted fast track designation to ARX517 for use as a potential treatment option in patients with metastatic castration-resistant ..

No cohorts available for who already took chemo..so may be good fit for your husband as he did not took chemo yet.

Here is good notes from other group. Credit to healthunlocked.com/user/Max...

ARX517 and Pluvicto target PSMA on prostate cancer cells but work differently. ARX517 is an antibody-drug conjugate that delivers a cytotoxic agent directly to cancer cells. Pluvicto, a radioligand therapy, uses a radioactive molecule attached to a PSMA-targeting ligand, delivering radiation to kill cancer cells. ARX517's mechanism is chemical, through the drug it carries, while Pluvicto's is radiological, utilizing targeted radiation.