Behind door number 0.1?: Been on... - Advanced Prostate...

Advanced Prostate Cancer

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Behind door number 0.1?

Jvaughan0 profile image
12 Replies

Been on 6-month Lupron injections since last fall after PSA climbed to .6 after a three year period of <0.1. I had whole pelvis radiation in December and January. Last April, ultra sensitive PSA at Duke was .17. MO said wait for next PSA test until this coming October-- testing before then would create needless anxiety. I didn't follow his advice and got low sensitive test in May. Level was .2-- different lab, less sensitive test, but I wanted a baseline for later testing from the local lab. Tested again by my regular lab yesterday with results at 0.1. I'm going to pass along my May and July results to my MO today. Based on past discussions, I'm thinking he will say "great, it is heading in the right direction." Again, we will likely disagree, but he is the nationally known prostate cancer expert and I am the lowly layman who has been battling cPA since 2014. It seems to me that adding Zytiga and Prednisone might be in order, but I'm not the expert. I would love to get thoughts from the group.

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Jvaughan0
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Jvaughan0 profile image
Jvaughan0

I think if I insist, my MO will order Zytiga, but as long as my PSA is low, it makes sense to my layman self to wait and see where I am in October. It is my understanding that radiation keeps killing cancer cells for over a year and I am not castration resistant yet. Barring my emotions, it seems reasonable to delay another drug until there is a PSA uptick. On the other hand, I want to blast those crazy little cells with every treatment imaginable.

Jvaughan0 profile image
Jvaughan0

Indeed... but I don't want to underestimate the power of being one's own devil's advocate.

GP24 profile image
GP24

"Been on 6-month Lupron injections since last fall after PSA climbed to .6 after a three year period of <0.1. " I cannot believe this. You can also wait with Lupron until the PSA reaches 10.0

Jvaughan0 profile image
Jvaughan0

Might have been a better way of saying it, but point taken. My point is PSA is still headed down from .6 to .1. Having a <0.1 PSA does buy peace of mind, but will adding Zytiga be a long term benefit, or simply a knee jerk reaction, using a drug that might better serve me when PSA starts to climb again.

Magnus1964 profile image
Magnus1964

Doctors are not gods. They make mistakes and sometimes stupid ones. You have the right to ask questions. In your situation I would wait for the next PSA test. If it is up again, then it may be time to to move onto a new treatment. Zytiga is not the worst choice. I you don't like that choice that start with casodex.

Jvaughan0 profile image
Jvaughan0

Amen... I have never bowed down to a medical deity as my wife often reminds me. I try not to be too disagreeable either since I am aware of the depths of my own opinionated ignorance. Thanks for your suggestion. I mentioned Casodex to my MO last year. He seems to think it is an old school drug. I seem to think he is an excellent, top of his field researcher who is dismissive of of ideas from people who aren't his colleagues. Neither here nor there... I can always change doctors. My question is does it make sense to wait a moment longer to add another drug to the Lupron regime?

MateoBeach profile image
MateoBeach

Yes. Wait. Save your arrows at this point. If it truly does clearly start to rise you have time to evaluate options. At PSA .25 or above get a PSMA PET scan to see if you can identify where any remaining cancer is hiding. There may be ways to specifically target it. Keep your options open until then and don’t panic.

SteveTheJ profile image
SteveTheJ

I would get 3 month Lupron instead of 6 month. My first meeting with my oncologist he made a face like someone had cut a nasty fart when I told him the oncologist gave me a 6 month. I'm not sure why but that's my only advice.

middlejoel profile image
middlejoel

Take a deep breath and relax, you are in a good place. I can only dream of been behind door 0.1. I also had full pelvic SBRT a bit over a year ago. Lowest PSA following was behind door 0.7.

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

Best Headstone "Doctors are never wrong"

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/08/2022 3:45 PM DST

Jvaughan0 profile image
Jvaughan0 in reply toj-o-h-n

I'm more interested in understanding why he reasons why he is right. I can't think of a rationale not to add a third drug. Many people here think it is the thing to do.

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

Well you know what they say..... two's company.... three's a crowd..........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/08/2022 5:06 PM DST

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