Is this castrate resistance? - Advanced Prostate...

Advanced Prostate Cancer

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Is this castrate resistance?

SuppWife profile image
15 Replies

Husband’s T has hovered around 24 since restarting Firmagon about a year ago. He had proton beam radiation in late 2020 to pelvic lymph nodes and where right seminal vesicle was ( 2018 RP) because an Axumin scan identified uptake in those spots. I believe broad coverage was done but I do not have the report.

His PSA got down to 0.03 in January (finished radiation in November) but then started to rise again. Stayed at 0.11 for a couple of months, then to 0.13 in April and T was 22. In April he switched to Orgovyx from Firmagon. Just got newest results after a month of Orgovyx his T is at 7, but PSA is at 0.17. ☹️

Thinking I want to find new provider. Which regional prostate cancer specialist / cancer center would be our best bet if we are in Nashville?

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SuppWife
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15 Replies
SuppWife profile image
SuppWife

Thanks for responding, Nal. His PSA has not been undetectable since it got to >0.014 on Firmagon in 2019 when after almost a year his doc suggested a break to see what PSA did. When T recovered, PSA started rising. Firmagon was restarted but never got T below 20 and never got PSA below 0.17 and it was up to 0.29 when he got radiation in Oct/Nov of 2020.

We asked about adding a second Med and were told No bc he was not diagnosed metastatic. We asked the same doc about the implant and we were shot down.

And yes we got the hard sell on orgovyx but it did get his T from 22 to 7. He actually says he feels less fatigue with it than the Firmagon, too.

I will get DHT and E2 measured. Also plan to ask for alkaline phosphatase number.

I appreciate any thoughts and advice.

cesces profile image
cesces in reply to SuppWife

Sounds like you should shop around for a new Doc.

You can start the process by seeking out some second opinions.

Tall_Allen profile image
Tall_Allen

There are always some cells that are CR, but clearly not a lot. There have been trials of adding a second-line hormonal in situations like this:

meetinglibrary.asco.org/rec...

urotoday.com/conference-hig...

SuppWife profile image
SuppWife in reply to Tall_Allen

Allen and Nal, thank you both so much. I was confident when I posted I get responses from the two of you and I can’t tell you both how much I appreciate it. If only his doctor was as responsive.

SuppWife profile image
SuppWife

Allen and Nal, thank you both so much. I was confident when I posted I get responses from the two of you and I can’t tell you both how much I appreciate it. If only his doctor was as responsive.

Stevecavill profile image
Stevecavill

Isn't BCR while T is at castrate level the definition of castrate resistance?

dagreer profile image
dagreer

Well I learned what intransigent means today...

j-o-h-n profile image
j-o-h-n

Why Choose Prostate Cancer at Vanderbilt (Nashville)Recognized cancer care

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SuppWife profile image
SuppWife in reply to j-o-h-n

Thank you, John. When we first started this journey I feel like I remember there was not really a seriously PCa focused doctor at Vanderbilt and I also assumed (perhaps incorrectly) VUMC would be pretty strictly SOC. I never read anyone exulting their PCa doc at Vanderbilt so I haven’t known a name to seek out. That being said we should probably consult with them. We are thinking of going back for a follow up consult with Dr. Burgess in NC, too.

Not yet!

elvismlv123 profile image
elvismlv123

dr snuffy myers in va. he is possibly the most knowledgeable dr on the east coast

SuppWife profile image
SuppWife in reply to elvismlv123

Is he not retired?

elvismlv123 profile image
elvismlv123 in reply to SuppWife

could be dunno

elvismlv123 profile image
elvismlv123 in reply to elvismlv123

never stopped me to ask for a recco call the best guy ask for a recco inyour area they do similar stuff you dont need the exact dr i had leibowitz in ca but used his buddy in nyc.they save my life

elvismlv123 profile image
elvismlv123 in reply to SuppWife

yes he is but his protocols and knowledge still is alive and kickingHis research group demonstrated that the fatty acid, arachidonic, common in meat, dairy products, and egg yolks, promotes the survival and growth of human prostate cancer cells. They showed that arachidonic acid is converted to a hormone, 5-HETE, which appears to foster the spread of prostate cancer. Dr. Myers has long been popular among prostate cancer patients as a speaker because of his ability to explain science and medicine in easy-to-understand language. For some years his other responsibilities limited the number of speaking engagements he could accept. In an attempt to address this problem, Myers and his wife, Rose, started a newsletter called Prostate Forum in the summer of 1996. Dr. Myers left the University of Virginia on Feb. 15, 2002 to establish the American Institute for Diseases of the Prostate in Charlottesville, VA. The Institute focuses on providing comprehensive management of prostate cancer. Dr. Myers tailors treatment according get hold of his institute and find a sub for him. here i learned to monitor 5-hete cuz my psa is steadily rising and 3 hormones of mine are controlled.dht,dhea,and t. MY PSA is below 4 after 17 yrs of adt.

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