Looking for advice/opinions - Advanced Prostate...

Advanced Prostate Cancer

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Looking for advice/opinions

Vman1 profile image
34 Replies

Hi all. I’m looking for advice and opinions to help me make a wise decision. 74 year old diagnosed in June 2023. PSA:16.23. MRI: 1) multiple prostatic nodules with prostatic capsule maintained without evidence of metastatic spread. 2) few mildly prominent mesorectal lymph nodes, etiology uncertain.

Biopsy: prostate ROI: adenocarcinoma Gleason 3+3=6 grade group 1 (5% of total bx). Right prostate: Gleason 4+3=7 grade group 3 (20% of total). Left prostate: Gleason 4+3=7 grade group 2 (10% of total).

PSMA-PET scan : focal increased uptake in left hemiprostate. Multiple enlarged presacral lymph nodes with significant tracer uptake consistent with nodal metastases. No evidence of distant metastatic disease, so I am N1M0.

Treatment: IMRT 45 radiation tx finished Dec 2, 2024. Began Eligard 6 month injection on October 8, 2024.

Blood work December 24, 2024: PSA:0.162 ng/mL and Testosterone:<10 ng/dL.

My urologist sent me to another urologist in their clinic who specializes in prostate cancer. He recommended adding Zytiga to my treatments with a plan of two years with Eligard and then stopping all meds.

Questions:

1) I understand that ADT’s purpose is to significantly reduce testosterone shutting down the cancer cells’ food source. I also think I understand that the addition of Zytiga is to further eliminate any lingering testosterone.

However, my testosterone level after only one dose of Eligard is already at <10 ng/dL and my PSA has dropped from 16.23 to 0.162. Is Zytiga really necessary at this point or is it an overkill?

2) Is it better/feasible to finish the two year recommendation of Eligard and then monitor my PSA holding the Zytiga in reserve? I don’t want to jeopardize the potential efficacy of Zytiga by using it too soon if it’s not be necessary.

I am aware of the STAMPEDE trial results but just trying to make the right decision. Thanks.

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Vman1
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34 Replies
MWPesaPharmD profile image
MWPesaPharmD

Not saying that Zytiga (generic = abiraterone) is overkill at this point -- but it is:

Not approved for use in non-metastatic prostate cancer

Not recommended by NCCN until you have metastatic prostate cancer

-- Abiraterone is recommended by NCCN for very high risk (Grade Group 4 or 5) patients

"Castrate" level of testosterone is usually referred to as <50, with many experts in the field (ex. E. David Crawford) arguing it should be <20, but you are already there regardless.

1) I would discuss your Grade Group/NCCN reccos with your urologist(s) and see why they feel the need for more aggressive treatment and does that make sense to you

2) Zytiga is in a class called 'ARPIs' (androgen receptor pathway-inhibitors), along with Xtandi, Nubeqa, and Erleada (Zytiga works differently than those other 3 however)

-- In general, NCCN does not strongly recommend repeating ARPI treatment (ex. taking Zytiga and then Xtandi, after Zytiga starts to fail) as there are diminishing returns

3) Discuss the risks/benefits of starting an ARPI this early in your prostate cancer journey --- you may progress in the future and need other options (OR you might not) --- Zytiga (and all meds) certainly comes with side effects of its own AND the need to take prednisone daily, it is not a treatment option without tradeoffs

Vman1 profile image
Vman1 in reply toMWPesaPharmD

Thank you so much. You make perfectly good sense. I will discuss this with my doc.

petabyte profile image
petabyte in reply toMWPesaPharmD

I think this "Not approved for use in non-metastatic prostate cancer" is no longer true.

In the NCCN guidelines (Version 2024.4) under the section: ADT for Clinically Localized (N0,M0) Disease

"Abiraterone can be added to EBRT and 2 years of ADT in patients with very-high-risk prostate cancer. In the STAMPEDE trial, the hazard ratios for OS with the addition of abiraterone to EBRT and ADT in patients with node-negative disease was 0.69 (95% CI, 0.49–0.96)"

You fall into the N1M0 category (on the right side of that page) and your risk category is less relevant. For N1M0, ADT plus Abiraterone is also listed as a treatment option.

NCCN extract
Vman1 profile image
Vman1 in reply topetabyte

Part of the problem is the variety of definitions, high-risk, very high-risk, etc. It’s hard to stratify these. Are these definitions based on Gleason scores or presentation only. For example, even with positive local nodal involvement, is a Gleason 4+3=7 high risk or very high risk or neither? Trying to look up these definitions and make sense of them is confusing. Obviously no one wants to under treat this cancer but there is also a downside to over treating.

petabyte profile image
petabyte in reply toVman1

In the EAU guidelines node positive is always 2 years Abi, 3 years ADT...

There is no harm starting it. Stop if it's a problem. I had no additional side effects from adding Abi. Bloods same, no weight gain, no hot flashes, no increased BP but probably an impact on BMD (difficult to say).

Vman1 profile image
Vman1 in reply topetabyte

BMD?

petabyte profile image
petabyte in reply toVman1

Sorry, bone mineral density.

Vman1 profile image
Vman1 in reply topetabyte

👍

gsun profile image
gsun in reply topetabyte

He is going to get hot flashes anyway with the ADT.

MWPesaPharmD profile image
MWPesaPharmD in reply topetabyte

It is an NCCN recommendation but an off-label use in that situation. Based on his Grade Group that was shared - does not fall into the very-high risk category, which are the only patients where that is recommended

Tall_Allen profile image
Tall_Allen

The only useful information available to you is the Stampede trial for newly diagnosed PCa patients who are N1M0. You seem to have misunderstood the trial - it is 3 years of ADT and 2 years of abiraterone:

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

Could you get by with less? You have no basis for making that decision. Why risk it?

1. Abiraterone does several things that ADT doesn't do. It prevents the adrenal and the cancer itself from manufacturing androgens. It has been proven to be a beneficial addition to ADT.

2. It is never beneficial to use a proven medication later instead of sooner. Abiraterone has optimal survival benefit when used when N1 is discovered, much less benefit when used later.

Vman1 profile image
Vman1

Thank you. My reasoning was keeping the Zytiga in reserve, if needed later but I understand your comment about risk. I don’t want to make the wrong decision or better still, regret my decision in the long run. I do understand the STAMPEDE study but my doctor is the one stating two years for both medications.

petabyte profile image
petabyte in reply toVman1

I think NCCN suggests two years for both - see screenshot above. I suppose your doctor is following that. i do wonder why they reduced it from 3 to 2 years though.

"Abiraterone with ADT should be considered for a total of 2 years for those patients with N1 disease who are treated with radiation to the prostate and pelvic nodes."

EAU (European) guidelines suggest 3 years ADT and 2 years Abi. I am following this treatment since I am very high risk N0M0

EAU guidelines
Vman1 profile image
Vman1 in reply topetabyte

Thank you

speranza10 profile image
speranza10 in reply toVman1

It is no longer customary to leave the most effective drugs for later, it has been discovered that using them earlier is much better than leaving them in reserve. If there are nodal metastases now it is strongly recommended to add Zytiga for two years.

Vman1 profile image
Vman1 in reply tosperanza10

Understood. Thank you.

Vman1 profile image
Vman1

Curious. Is the only way to measure androgens via a testosterone test? I know that the adrenal glands also produce the hormone dehydroepiandrosterone (DHEA), which the body transforms into testosterone and estrogen. If one has a testosterone level of <10 ng/dL while on Eligard does that mean that regardless of the fact that Eligard works on the testicules exclusively, there is no other androgen production? Or is that too naive a way of thinking?

Cloudcatcher profile image
Cloudcatcher

Did you consider dendritic cell vaccination as we do in Germany? We also treat patients with priming the prostate locally with Keytruda. For more info text me

jdm3 profile image
jdm3

Sounds like you are doing pretty well to me. I would seek the opinion of a prostate oncologist at a center of excellence, not just a urologist who specializes in PCa.

SsgCulldelight profile image
SsgCulldelight

Hi it sounds like you have it arrested, lymph nodes are of concern because of access to the system cells can migrate without u knowing, however since your on adt, that should reduce that capacity for them to multiply. . I wood watch n wait, but keep a close eye on your psa since it's basically under undetectable.

Vman1 profile image
Vman1

thanks

caltexman profile image
caltexman

Just my opinion but hit the beast as hard as you can up front. New treatments are on the horizon.

Vman1 profile image
Vman1 in reply tocaltexman

Yes, trying to make the right decision to do just that. Thanks

NecessarilySo profile image
NecessarilySo

Sorry to throw a monkey wrench into your situation but if you are not metastatic, why are you even taking ADT? (I am not a doctor so take that lightly.) I had RT back when my PSA showed about 8, but didn't take ADT until four years later when my PSA again rose above 4. In other words, you are putting your body into an ordeal with chemical castration, unnecessarily. Imho.

Sorry again...I read your profile and I see you are metastatic.

London441 profile image
London441

Your Gleason score is not indicative of disease that needs aggressive treatment, but your node positively definitively is. There is no question that ADT is warranted, and the addition of the abiraterone as well. Your first shot at eradication is always your best one.

Your MO may be prescribing 2 years of ADT instead of 3 because of a growing movement by many doctors of more consciously weighing the benefit of longer ADT courses against the side effects and cumulative impairment on quality of life in many men.

As your progress in your ADT journey, monitor any struggle with it honestly. If I understand correctly, you have been on it for just 3 months. You may or may not know what you’re possibly in for.

Some do not suffer much from the sides and do not experience the many potential consequences from it. Many more do. Weight (fat) gain from slowed metabolism, dramatic muscle loss, increased insulin resistance, high blood pressure, loss of bone density, cognitive impairment and potential danger to heart health are all extremely common, especially if any of these conditions are pre existing in any way.

Know your numbers! At baseline you should already have had a dexa scan (measures body composition and bone density) as well as a complete blood work up.

The state of your overall health (and sometimes a bit of luck) hold the key to how well you fare on ADT. I would not count on the luck. Your diet and especially your exercise habits are the deciding factor in this, just as it is for aging in general.

Unless you are dedicated to strength and fitness training already, become so. 2 years is not a long time, but ongoing intervention on these negative effects of ADT is a must.

Vman1 profile image
Vman1 in reply toLondon441

Thank you London441. I read your bio and very impressed with your honesty and desire to kill this beast if possible. I have fortunately been in very good health prior to my diagnosis and am aware of the potential SE’s of treatment. I do exercise daily, weights and aerobic alternating days. Also, live on a farm so I have God’s wonderful animals to thank for being active with chores everyday. If there is any potential for a cure/long remission for my situation, I will take it. That is why I appreciate this forum. Lots to consider and much ammunition to speak to my doctor about. And you are correct, in the great scheme of things, 2 years is not a long time.

Teacherdude72 profile image
Teacherdude72

I was 67 when diagnosed with G9, had radiation and 2 years of Lupron, reoccurrence 2 yrs after Lupron, Nubeqa for 39 months then 10 vacation at strong suggestion of my Oncologist. Reoccurred and back on Lupron & Nubeqa also had a tiny spot on L2 radiated. PSA now 2 months late 0.08. I am now Stage IV

I strongly suggest getting a Medical Oncologist as your doctor.

Any decision you make is the right one, NEVER second guess after the fact. There is never a Do Over! Be Positive in your attitude.

Vman1 profile image
Vman1 in reply toTeacherdude72

“Any decision you make is the right one, NEVER second guess after the fact. There is never a Do Over! Be Positive in your attitude”

Absolutely love your comments. Thank you.

Teacherdude76 profile image
Teacherdude76 in reply toVman1

Very welcome! Appreciate you commenting.Live your life well: it's the only one you have.

Papillon2 profile image
Papillon2

A wise man once said, "There is a lot of wisdom for prostate cancer patients to be had in the sad story of the mule who starved standing in indecision exactly halfway between two piles of hay. It's well worth one's time to do research, but once you do, you have to follow through by picking a treatment plan, getting the treatment done and waiting patiently for the results, we all do. There are no guarantees. Best wishes for whichever treatment plan you choose."

Vman1 profile image
Vman1 in reply toPapillon2

That is so true!!

ron_bucher profile image
ron_bucher

If I was in your shoes, I'd find (and rely mostly on) a very experienced prostate oncologist. Every individual case is unique, and nobody in any patient forum like this is as qualified as your oncologist(s) to provide the personalized recommendations you deserve.

Vman1 profile image
Vman1 in reply toron_bucher

Yes, I need to do that. Certainly another opinion would be in order. Thank you

VictoryPC profile image
VictoryPC

Hit it hard with everything natural and medicinal and join the race to prevent it from winning.

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