Seeking Guidance on the Next Steps in My mCRPC Treatment Journey.

[Pcnmyy]

Hello Friends,

I would greatly appreciate your insights and guidance as I navigate the next steps in my treatment journey with mCRPC. Below, I have outlined the key details of my medical journey to date:

• In November 2019, I was diagnosed with G-9 aggressive prostate cancer with regional/distant lymph node involvement (PSA 65). My urologist and medical oncologist advised against radiation and prostatectomy, opting instead for the standard of care. I initially started with Lupron injections (every 3 months) and Erleada. Several months later, my oncologist transitioned me from Lupron to Orgovyx (Relugolix). I remained undetectable (PSA < 0.01) until December 2022, at which point my oncologist recommended a medication break in January 2023.

• My PSA began to rise slowly, and when it reached 1.16 in April 2023, I was placed on Bicalutamide and Orgovyx. However, the PSA continued to increase, prompting my oncologist to replace Bicalutamide with Erleada. By August 2023, following a PSMA PET CT scan (PSA at 2.39), it was clear the cancer had metastasized from 4 to 8 lymph nodes, though no bone metastases were detected. At this stage, my oncologist replaced Erleada with Xtandi.

• Unfortunately, even on Xtandi, my PSA continued to rise, reaching 2.94 as of October 15, 2023. My oncologist recommended continuing with Orgovyx and Xtandi until January 2025, and if my PSA surpasses 4.0, he plans to start me on Docetaxel (Taxotere).

Throughout this journey, I have maintained a plant-based diet, walked 2.5 miles daily, and engaged in strength training at the gym 2-3 times a week. Overall, I’m in good health, aside from the typical side effects from the medications, including fatigue and nighttime hot flashes.

While I understand my oncologist is following the standard of care, I have a couple of questions:

1. Are there any other medications or combinations of therapies that I should consider before transitioning to chemotherapy?

2. I inquired about using Estradiol transdermal patches alongside Orgovyx and Xtandi to mitigate bone loss, but my oncologist was indifferent, suggesting I could try it for a couple of months. Have any of you had experience with this combination, and if so, what were the results?

I sincerely appreciate your time and any advice you can provide. Thank you for your support.

[RyderLake2]

Hello,

I am not sure where you are located but if radiopharmaceutical drugs are available in your area like Pluvicto (Lutetium-177) or the more stronger Actinium, you might want to consider this as an option and as an alternative to chemotherapy. Good Luck!

[Pcnmyy in reply to RyderLake2]

Thank you for your response. I live in the US. My insurance conditioned the approval for Pluvicto therapy on first going through two types of Chemotherapy. I tried to get Pluvicto therapy in Europe, but it turned out to be beyond my financial resources ($ 16K/session excluding travel and living expenses.)

[RyderLake2 in reply to Pcnmyy]

Hello,

There are several clinical trials underway in the United States looking at Lutetium-177 before chemotherapy. Do a Google search under “clinical trials.gov”. Use your area and search for PCa trials that are currently recruiting to narrow your search. Another option is to get Lutetium in India or South Africa where, even with airfare, the procedure is far less expensive than in Europe. One contributor to this forum with the call name “Sky Pilot” has written extensively about his experience getting treatment with radiopharmaceuticals in India. Check him out. It is possible. I personally have had four Lutetium infusions in Canada where I live and I have never had chemotherapy. Good luck!

[Pcnmyy in reply to RyderLake2]

Thank you very much for the valuable info about the clinical trials and the LU-177 therapy venues outside the US. I'll explore them.

[Docker53 in reply to RyderLake2]

Just a question is Lutetium approved in Canada or were you in a clinical trial?

[RyderLake2 in reply to Docker53]

Hello,

Lutetium-177 was approved for men with metastatic PCa by Health Canada in 2022 but only after chemotherapy. I received it before chemotherapy as a participant in a clinical trial called SPLASH. I believe it will soon be approved in Canada as an alternative to chemotherapy. That is the case in most of the world outside of North America. Hope that helps.

[Docker53 in reply to RyderLake2]

Thank you. My husband had Chemotherapy two years ago. Was stable for 6 months, then PSA climbed again and he had 6 sessions of Radium 223. Stable for 3 months, then PSA up again. He has been on Abiraterone and prednisone for 4 months now and his PSA keeps rising. It is at 114.09 now. He has had CT scans and MRI scans every 3 months for a year now and there is no significant differences from each scan. Oncologist wanted him in a clinical trial at Princess Margaret hospital in Toronto, however there are no trials available at present. She said the last treatment available besides clinical trial is Chemotherapy again, however she wants to keep this in her back pocket. Our last meeting with her she told us she is going to specialize in one type of cancer and it is not prostate cancer. My husband will now have to meet a new Oncologist next month. I'm hoping he will be open to Lu-177, because when I inquired about it to his present Oncologist, she said it was not approved in Canada yet.

[j-o-h-n]

Would you please tell us your age and your location. Thank you and keep fighting those little bastards....

Good Luck, Good Health and Good Humor.

j-o-h-n

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

Thank you for your response. Im turning 64 in a few months. I reside in Georgia.

[Lizzo30]

If your oncologist gave you permission to try Estrodiol patches I would jump at the chance bc this isn't often an option

[Pcnmyy in reply to Lizzo30]

Thank you for your response. I consulted ChatGPT and I got the following response: "Using transdermal estradiol patches in combination with Orgovyx (relugolix) and Xtandi (enzalutamide) for prostate cancer treatment is not typically recommended without careful medical supervision. Each of these medications has distinct mechanisms and potential interactions:

Orgovyx is a gonadotropin-releasing hormone (GnRH) receptor antagonist that reduces testosterone levels, which is crucial for treating prostate cancer.

Xtandi is an androgen receptor inhibitor that blocks the effects of androgens like testosterone on prostate cancer cells.

Adding transdermal estradiol to this regimen could potentially complicate hormone management due to overlapping effects on hormone levels. Estradiol patches are primarily used to manage menopausal symptoms and are not standard for prostate cancer treatment. Their use in prostate cancer is more experimental, focusing on reducing testosterone with fewer cardiovascular side effects compared to traditional therapies.

Before considering such a combination, it is essential to consult with a healthcare provider to evaluate the potential benefits and risks based on individual health conditions and treatment goals."

This is why I would like to hear from some who had tried this type of therapy and what are their results. Thanks.

[HikerWife in reply to Pcnmyy]

My (limited) understanding of estradiol patch use is that there are 2 protocols: one high dose with the intent of lowering testosterone, and one low dose with the intent of simply replacing estrogen you would normally have, to help with bone loss. I have seen this discussed on the forum, pretty sure you can find info with a search. Good luck to you!

[Tall_Allen]

1) If your lymph nodes were all in the pelvis, I don't understand why you did not ha ve whole pelvic radiation from the start. Perhaps it may still cure you, although that window may be closed. Find a new radiation oncologist.

2) Docetaxel doesn't work as well for lymph node-only PCa

3)What were your DXA scan results?

[Pcnmyy in reply to Tall_Allen]

Thank you, TA for your message. The attached report scan (at the end of the reply) shows the findings of an Axumin PET scan done a few months after my diagnosis. Based on these results my urologist and medical oncologist advised against radiation and prostatectomy, opting instead for the standard of care. I did a couple of scans after that, which reported that most of the listed lymph nodes were shrunk to normal sizes.

The following are the results of the most recent PSMA PET scan done on 8/7/2024:

Abdomen/Pelvis:

There is physiological metabolic activity within the solid abdominal organs and GI systems.

Compared to prior PET/CT, there is interval appearance and/or interval increase in tracer avidity of multiple intensely tracer avid abdominal pelvic lymph nodes with prominent examples as follows:

-New right retrocrural lymph node measures 1.4 x 1.1 cm SUV max of 70.5 (CT image 253)

-Aortocaval node measures 0.8 x 0.6 cm SUV max of 30 (CT image 299), previously 0.6 x 0.5 cm SUV max of 4.1

-New retrocaval node measures 1.6 x 0.8 cm SUV max of 46.9 (CT image 313)

-New left pelvic node measures 0.6 x 0.5 cm SUV max of 11 (CT image 394)

In the prostate gland, there is mild heterogeneous tracer uptake without discrete tracer avid focus significantly above this background. Redemonstration of dense calcification in the leftward prostate gland.

I would highly appreciate your assessment and answers to my posted questions.

Axumin PET scan-July 2020

[Tall_Allen]

(1) Talk to a radiation oncologist

(2) Get a DXA scan

[Pcnmyy in reply to Tall_Allen]

Thank you for your recommendations. I'll look into them.

[maley2711 in reply to Pcnmyy]

I thought you mentioned distant lymph node metastasis? If so, perhaps that fact is the reason they advised against possible curative RP + ADT or RT +ADT ?

[Pcnmyy in reply to maley2711]

Thank you for your response. Precisely, that what I was told by both the urologist and MO.

[maley2711 in reply to Pcnmyy]

Trying to save you from the possible side effect of RP and RT....I guess studies show insignificant benefit when distant metastases have been found. SIGH!!!!!!!!

[Retireddoc]

Good morning. I am 71 years old, have G9, was diagnosed in 2021, underwent RP and have undergone triple therapy with radiation to T8 met (solitary bone met) and whole pelvic radiation for solitary PET + node.

I have remained PSA undetectable since part way through my triplet therapy at Johns Hopkins 10/22-12/22. I taken off ADT after one year.

I, too, live in Georgia. I received my radiation treatment at Emory.

I would be glad to privately talk with you if you are interested.

[rfgh20 in reply to Retireddoc]

Yes, I would like to talk next week when I return from a trip. How do we make the connection?

[rfgh20 in reply to rfgh20]

Perhaps you weren't addressing me, but I'm retired doc and similar med hx.

[NecessarilySo]

I suggest trying lycopene, It worked for me, but I realize that you were G9 while I was G7 and there are many different varieties of PC, so of course there are no guarantees of good results. I suggest you read my bio, and go from there.

[garyjp9 in reply to NecessarilySo]

What is the dose you take?

[NecessarilySo in reply to garyjp9]

As I explained in my bio, 1/4 cup of V8 juice, four times per day. I also took a 20mg lycopene capsule per day but I suspect only the food source was effective. I ate other tomato based foods like catsup, often. And I took some cardamom with black pepper daily.

[garyjp9 in reply to NecessarilySo]

Thanks a lot

[jazj in reply to NecessarilySo]

How long have you taking lycopene/high amounts of tomato products and what does "worked for you" mean? I looked at your history and you've been on androgen deprivation therapy much of the time so how were you able to determine with any certainty lycopene made a significant difference?

[NecessarilySo in reply to jazj]

It's hard to explain but basically, I could feel the pain from metastasis growth, and lycopene eliminated the pain. It was in conjunction with Lupron, and heat and magnets also. My guess is that the metastases grew in spite of Lupron, because my T was not zero, but went to about 9 most of the time. So the small amount of T allowed growth of tumors. Whenever they caused pain, I hit them with lycopene, or heat, and the pain vanished, but came back after a few weeks, so I hit them again. I could always feel that the pain went away.

[dhccpa]

I see TA weighed in on why you didn't have pelvic/prostate radiation treatment up front, because based on your summary at diagnosis, I thought that could very well be curative.

Just be aware that there are many options and oncologist can recommend, some better than others. You'll find this forum invaluable at guiding you down the best path, although sometimes that path can be a judgement call.

[Cenerus]

I'd talk to a Radiation Oncologist now. I had a similar diagnosis to you in the beginning and most of the oncologists I talked to recommended whole pelvis IMRT as it has a chance of cure. It might not be too late for you, so not why try and wipe out all the spread in the lymph nodes and prostate before having to go to the next step of Chemo then radio pharmaceuticals. It seems that you still have one more option on the table. And I'd see about getting a new MO. This one seems very conservative and fatalistic.

[Miccoman]

There is immunotherapy -- doctors don't like it because it doesn't lower PSA but, in my experience, it does improve overall QOL. I did it when my PSA got to 2.0 while on Lupron and Xtandi because my original MO (who was a research oncologist at Moffitt Cancer Center in Tampa) recommended it based on his studies of available literature in 2014.

Provenge is a 3 session (actually 6 procedures) procedure over 6 weeks, with a blood filtering thing called Leukapheresis to remove T cells that are then exposed to prostate cancer, which takes a few days, then are put back in you during a fairly short infusion. Medicare covered mine, as it is expensive. Generally done, as I understand it, with no other meds except ADT (i.e. Lupron)

I'm nearing the end but feeling great, physically, and driving doctors crazy because I don't look like I'm dying -- just had a urologist delay a procedure because he felt "uneasy" and is now flabbergasted that that month delay has precluded my having the procedure at all due to disease progression, after all I look and present just fine (he even made fun of me in his notes for telling him I am terminal and subjected me to a DRE knowing I'm stage 4, have had a TURP and was there to discuss testicular protheses. I guess he just likes sticking his fingers up guys butts. Fucking surgeons! SMH).

[VictoryPC]

There truly is an answer. DM me.