Darolutamide and scan question (2nd U... - Advanced Prostate...

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Darolutamide and scan question (2nd UPDATE 1/15/22) RESULTS of Pylarify scan Anyone have any thoughts or advice? Questions we should ask?

SuppWife profile image
14 Replies

My husband has a rapidly rising PSA (from 1.28 on Oct 18th to 5.9 on Dec 10th) and he was scheduled to get a Pylarify scan on Jan 6th but with newest PSA reading doc wants to start darolutamide now and not wait for scan.

He's never been shown to be metastatic and we are disappointed to not be getting imaging. The last scan he had was in January of 2020 when PSA was about 2 which showed uptake in a pelvic node and where the seminal vesicles had been. He had proton beam radiation to the pelvic bed and node and his PSA dropped to a low of 0.03 then started to rise again. There were problems during his proton beam treatment and the machine actually broke down several times so we've always wondered if his treatment was compromised. No post radiation scans were performed.

He was using Firmagon, but T was stubborn. Took orgovyx for several months which got T lower. Now on second round of eligard (switch was recommended by Dr. Sartor at Tulane and it's been good for my husband, less pain than firmagon and good response...T is at 6) and Dr. Sartor wants him to start darolutamide now.

I would sure like imaging done just for our own information. I understand it won't change the treatment plan right now, but is there a reason not to get imaging now just to know?

He'll start darolutamide as directed by Dr. Sartor.

Just wondering about scans.

Thanks in advance.

1/15/2022 UPDATE:

Results of my husband's Pylarify scan:

CLINICAL HISTORY: 68 years-old Male with RESTAGING PROSTATE CA.

* PSA level: 0.30 NG/ML (7/13/2021)

(NOTE: at time of scan PSA between 10 and 12)

* Prostate cancer biopsy: Radical prostatectomy 4/17/2018, prostate adenocarcinoma diagnosis, Gleason score 5+4 = 9 (grade group 5),

extraprostatic extension with invasion of bladder neck, symmetrical, and left vas deferens. Margins extensively involved by tumor.

* Gleason score: 5+4 = 9.

* Prior treatment: Radical prostatectomy, 4/2018. Proton beam radiation therapy to pelvic floor 9/2020.

* Current prostate cancer medication: Invitae, Guardant, and Caris.

FINDINGS:

* Liver background activity = 3.5 / 6.3 mean/max SUV

* Blood pool activity (descending thoracic aorta) = 1.6 / 2.6 mean/max SUV

* Parotid gland activity = 4.5 / 21 mean/max SUV

HEAD/NECK:

Brain: Normal activity within the brain. Bilateral basal ganglia calcifications

Salivary glands: Normal..

Nasopharynx, oropharynx and hypopharynx: Normal.

Adenopathy: No pathologically enlarged or radiotracer avid lymph nodes

CHEST:

Heart: Normal physiologic activity is present within the myocardium.

Lungs: Normal.

Adenopathy: No evidence of pathologically enlarged or radiotracer avid lymphadenopathy within the mediastinum, hila, supraclavicular or axillary regions

ABDOMEN/PELVIS:

Liver: Geographic fatty infiltration of the right liver is noted. No suspicious observation is seen.

Gallbladder: The gallbladder surgically absent.

Spleen: Normal attenuation and activity.

Pancreas: Normal attenuation and activity.

GI tract: Stomach, small bowel and colon appear normal.

Kidneys: Normal physiologic radiotracer activity and excretion of the kidneys.

Bladder: Bladder appears normal with excreted radiotracer

Prostate gland/bed: Surgically absent without abnormal uptake, max regional uptake 2.6.

Seminal vesicles: Surgically absent without abnormal uptake.

Adenopathy:

Regional lymph nodes:

* No significant lymphadenopathy

Distant lymph nodes: Approximately 8 retroperitoneal lymph nodes are identified with increased radiotracer uptake and three representative nodes as follows:

* Left periaortic lymph node measuring 1.5 x 1.2 cm with max regional SUV of 36.9 (CT image 177)

* Small aortocaval cluster measuring 1.1 cm with max regional SUV of 20.5 (CT image 183).

* Left common iliac lymph node measuring 1 cm with max regional SUV of 24.3 (CT image 196)

OSSEOUS STRUCTURES: Normal marrow uptake. Mild asymmetric pectus excavatum is noted with sternal implant. Multilevel degenerative changes of the spine are noted without abnormal uptake.

SOFT TISSUES: Scattered soft tissue tissue densities are noted consistent with injection sites. Diastases of the abdominal recti muscles are noted with small umbilical hernia containing fat.

IMPRESSION:

1. Distant retroperitoneal and left common iliac lymph nodes demonstrating increased tracer uptake concerning for metastatic disease.

2. No abnormal uptake within the prostate bed or regional lymph nodes.

END of REPORT

Dr. Sartor said darolutamide and test PSA monthly. Possibly good candidate for LU-177 later.

Anyone have any thoughts?

Is additional radiation to these lymph nodes possible or too close to other organs?

Thank you

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SuppWife
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Tall_Allen profile image
Tall_Allen

There is absolutely no value in getting imaging "just to know." Darolutamide is only indicated when there are no known metastases.

SuppWife profile image
SuppWife in reply toTall_Allen

I don't really understand why it isn't valuable to know if there are metastases or not. Wouldn't it guide treatment decisions? With his rapidly rising PSA and no imaging the recommendation for darolutamide would seem to indicate the doctor is assuming non-metastatic castrate resistance, right? If he is in fact metastatic is a different drug a better fit? Dr. Sartor is a leading prostate cancer doctor and that's his recommendation, so it seems reasonable to follow his advice, doesn't it? I find this all very confusing.

Tall_Allen profile image
Tall_Allen in reply toSuppWife

I think the confusion arises because of the term "metastatic." It doesn't mean what it seems to mean. It means that metastasis has been detected on a bone scan/CT. "Non-metastatic" means that no metastases have been detected on a bone scan/CT. When darolutamide (and apalutamide and enzalutamide) were approved for "non-metastatic CRPC," the randomized clinical trials only used bone scans/CT. Undoubtedly, if they had used PSMA PET scans, they would have found metastases. Darolutamide works well anyway. There is nothing more that Sartor would do if metastases were detected on a PSMA PET.

SuppWife profile image
SuppWife in reply toTall_Allen

That makes sense to me. Thanks for the explanation.

MateoBeach profile image
MateoBeach

Disagree with some of that. Darolutamide was approved for non metastatic but works quite well for metastatic PC as well. Very good alternative to enzalutamide. So starting it before the scan gives him access to getting it covered. It has not YET been approved for metastatic because it was not tested in the trial for metastatic. That was likely for marketing positioning vs the other lutamides.Then, get the PSMA scan soon after starting it! If the Mets are PSMA avid then he will be eligible for Lu-PSMA treatments and can be planning accordingly. Dr. Sartor is very savvy.

BAT treatment is another option that should be considered and discussed.

SuppWife profile image
SuppWife in reply toMateoBeach

Thank you very much for your encouraging words. Makes sense about the scans and possibly compromising approval. I will ask Dr. Sartor if he can still get the scheduled scan. I’m hopeful my husband might be able to try BAT someday.

slpdvmmd profile image
slpdvmmd

I like MateoBeach would advocate for getting the PSMA scan. While the USA is just entering the learning phase for use of PSMA scans and radioligand therapy (i.e. Lutetium or other isotope) a large part of the world has already incorporated these techniques into prostate cancer surveillance and treatment.

slpdvmmd profile image
slpdvmmd

Also would suggest you watch this recent youtube video by Eugene Kwon of Mayo clinic. Really addresses imaging, strategies and the patients role in care. youtube.com/watch?v=81iAzYV...

SuppWife profile image
SuppWife in reply toslpdvmmd

Thank you for the link. I will watch tonight. I agree. I would really like to have scans when his PSA is up because I don’t want it up again for a long time. 🙏🏻

slpdvmmd profile image
slpdvmmd in reply toSuppWife

It is a two part series and one that I honestly think all people both treating and with prostate cancer need to watch. He advocates for a seek and kill approach versus the common approach of staged palliative therapy. I wish you and your husband the best.

SuppWife profile image
SuppWife

Thank you, Nal. I was hoping to hear your thoughts. I appreciate it.

MGBman profile image
MGBman

Very interesting as I was facing a very similar situation. My uro and onco docs indicated that a PSMA PETscan would not change the return to ADT. That is accepted….but, and here is the big BUT…..my docs failed to see the human, individual component of all of this. I want to know what I’m up against…where is my enemy? Has he spread to other parts of my body? I understand that the PETscan will not change the SOC, but I need to know what is happening….where is the cancer? The easy and simple return to SOC, with no other thoughts, does not, at least in my mind, take into consideration the patient and what he might consider as very important to his mental welfare. I was just asking to add another dimension to my return to SOC.

SuppWife profile image
SuppWife

Yes! Exactly! 🙏🏻

SuppWife profile image
SuppWife

UPDATE: Dr. Sartor wants him to hold off starting the darolutamide until after his pylarify scan on January 5th.

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