Climbing psa but low testosterone - Advanced Prostate...

Advanced Prostate Cancer

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Climbing psa but low testosterone

Stumpgirl profile image
10 Replies

Hi all- just checking in with an update and a question. My father went back to see his oncologist Monday after learning his psa had climbed from .9 to 9.9 after just 10 months on Zytiga. Before deciding on a path forward (his onc seemed concerned about putting him through chemo if it wasn’t necessary), they want to do a bone and ct scan. If there is disease progression, they’ll move forward with chemo or a clinical trial (randomized xtandi vs xtandi plus). In the interim they did a blood panel and his psa is up again to 12. His testosterone, however, is remaining at its lowest point. Can anyone tell me how one affects the other? We know he is now castrate resistant after a short period of time and are very worried. Thanks in advance

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Stumpgirl
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cfrees1 profile image
cfrees1

There are cells in the body which are sensitive to low levels of T. Which, of course, is why one of the first treatments is ADT to reduce testosterone. Over time, some cancer cells will mutate to figure out how to grow by more effectively utilizing low levels of T, or androgens developed by other sources (very low levels). When your PSA is increasing even when your T level is at castrate levels (below 20), you are now considered castrate resistant. That is the relationship between T levels and PSA. Castrate resistant patients then need to proceed to other treatments because ADT alone is no longer working. Most people continue with Lupron though to continue to battle cells that are still castrate sensitive.

Stumpgirl profile image
Stumpgirl in reply to cfrees1

Thank you for the explanation

Stumpgirl profile image
Stumpgirl

Thank you. The genomics team at The Cleveland Clinic will be sending his tissue out for testing and will be reviewing the information .

MontyB profile image
MontyB

Was Xofigo (radium 223) mentioned by your father's oncologist as a possible future option ?

Take Care,

Monty

Stumpgirl profile image
Stumpgirl in reply to MontyB

We have to wait until scans are done until next week. During our consult with the oncologist, he seemed reluctant to make suggestions until he had all of the information. My dad is feeling ok but his psa is climbing rapidly - his oncologist mentioned a clinical trial with xtandi but let us know about the cross resistance issue. He said he wasn’t of the mindset to rush to chemo. He never mentioned radium 223 but I’m sure we will know much more when he has all of the info in his hands. The waiting game is awful. Couple that his info that Zytiga usually works on average for 36 months and my dad got 9 months.. and it’s pretty depressing. I’ll be sure to reach out to you as soon as i know more

leswell profile image
leswell in reply to Stumpgirl

Praying for positive scan results for your father. We are jealous of your having a genomics team. Leswell is only beginning month two of Zytiga; no scans have been ordered and there will be no blood draw until July 31st. I don’t feel a sense of urgency from our physicians.

We planted one row of lettuce this afternoon which looks pretty sickly. In the short term you have more reason to be depressed. Please wait patiently and hopefully, and we will try to do the same. Mrs. S

P.S. Maybe Nalakrats will at least write to you? I hope so. Oops. He already did. And what a reply. I’m the one who should take a break.

Stumpgirl profile image
Stumpgirl in reply to leswell

I agree. We are fortunate to be under good care. Apparently we just missed the cut off for a trial where they were doing free genetic testing so we will be using a third party. My family is relatively new to this so I am trying to interpret what I was told but I believe his oncologist said only 10% of genetic identifications are actionable. His treatment will not likely be based on that. His oncologist mentioned quality of life so many times that it is embedded in my brain. He told my father that if he knew he was going to prescribe something that made him very sick but would save his life, he would do it. But instead, he wants to prolong his life and preserve the quality of it. It seems so many here have done chemo up front and even aggressive chemo. It doesn’t seem he will go that way. It’s hard to feel as though this isn’t just a giant crap shoot

leswell profile image
leswell

Of course, one hopes to be part of the 10%! Silly, right? Stumpgirl, you seem to be anything but...stumped, that is. I often wonder what we would do if diagnosed today. I think my husband would follow the doctor’s orders, albeit reluctantly. I hope I can stick to my decision not to have either hormonal or chemotherapy should awry macrophages take over my interior. (Listened to “Natural Causes” by Barbara Ehrenreich.) I plan to just come on home and keep an eye on the weeds, I believe many physicians say they would do the same. Maybe bring on the other sort of weed, not that I could ever smoke it. Just call me Clinton, him, not her, and no I’m not getting political. How fortunate your father is to have you! Ditto to your last sentence. Mrs. S

leswell profile image
leswell

P.S. We will both be 80 in 2019. Life IS good, but it’s not such a terrible time to die. My father is buried a few blocks from our house. Can’t tell you how I miss him, but I wouldn’t wish him back with Alzheimer’s. As for “my guy”, he’s happily broadforking another row of the garden. Jan

Stumpgirl profile image
Stumpgirl in reply to leswell

I’m so happy you’re living a long life and still enjoying one another despite the struggle cancer brings. My heart breaks for the men my age (40s) who are diagnosed. It doesn’t seem fair. My father is 73- a young 73- with baby grandchildren from my brothers. He is my hero and one of my best friends. To see him suffer is torture to me. I’m praying i can keep him by my side for a little while longer. I need him. Best to you, friend. I’ll add you to my growing prayer list.

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