Should I be seeking extra treatment?

Posted by Brettiquette @brettiquette, Jul 22 4:36pm

Hey guys and wives, this is my first post here but have been lurking a couple months. I have a pretty good heath plan at Kaiser in Southern California. I got my first PSA test last June at 56 years old with a result of 138. Immediate bone and CT scans were negative. Subsequent PET scan indicated no spread. Biopsy in July resulted in Gleason 9 (4+5) and PNI. started casodex and PSA had declined to 80 before RARP in late September. Pathology indicated 1 of 10 lymph nodes positive, seminal vestical and bladder neck invasions. No mention of cribriform. PSA of 9.4 six weeks after surgery. Had another PET scan mid December and lit up a bit in soft tissue near sacrum and rectum. Started Lupron (24 months) and SBRT in January on a TrueBeam (35 sessions). PSA in April was .3 and latest June results are < .1. I have an appointment tomorrow with urologist and have some topics to discuss including sexual health since I have severe ED. Bone and heart health. Pelvic pain issues. Also interested in more treatments I’ve read about here like adding a second ADT drug like Erleada, Estradiol or Eligard? Anticipating some reluctance since PSA is “undetectable”. Any thoughts on questions or treatments I should ask about? I’m very active and in pretty good shape, doing some weight training and coming out of the initial Lupron aches and pains that wrecked me after second 3 month dose. I’ve switched to a one mont dose and getting another tomorrow as well. Still have a bit of pain near rectum and in genitals, mostly in testicles, is that normal? Thanks for reading this far, if you have any tips or suggestions for questions to ask it is appreciated.
Brett

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Profile picture for johndavis60 @johndavis60

Hi Brett, my current situation is very similar to yours. G 4+5=9, RALP with several less than positive findings and now a PSA of 1.52. I will have a PSMA PET scan on Thursday July 31 and I am bracing for more bad news, although hopefully that I will turn a corner soon. Starting Firmagon ADT on Aug 6 and as long as no disastrous results, will be getting radiation of some sort in late august/ early September. I hope to achieve the same psa numbers you have.
I also have severe ED and have ordered a pump from Amazon. I hope things keep heading in a positive direction for you 🙂

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Dang! Hope your treatments are successful and smooth as possible. Regarding the pump, I too bought on Amazon but the one I recently got from my doctor is a bit different and uses a ring ejection mechanism that holds the blood in better. The ADT is obviously going to work against you but try and stay in the game. That’s what im doing, only 10 months post surgery but send a lot longer.

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Profile picture for rlpostrp @rlpostrp

You seem to be in very good hands with a very good physician and plan of attack that has worked well. While I am not a physician, I was in health care for 40 years, and from what you offer, I wouldn't change a thing...except to maybe thank God each morning and night. Congratulations!

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Thanks for the kind words if they directed at me, I’m very thankful for my progress thus far.

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Profile picture for jeff Marchi @jeffmarc

They usually offer Zytiga as the third drug. If you have heart issues they might not do that.

You said
“ adding a second ADT drug like Erleada, Estradiol or Eligard”

Eligard is just a different version of Lupron.’

The 2nd level drugs ARSI’s are

Zytiga (abiraterone) The one usually picked first. Side effects can be an issue.

Erleada (apalutamide) is one of the three lutamide drugs, The other two are Xtandi (Enzalutamide) and Nubeqa (Darolutamide).

Nubeqa has the least side effects and doesn’t pass the blood brain barrier so it doesn’t cause brain fog like the other ones can. And also has much less fatigue than the other two drugs.

I used abiraterone for 2 1/2 years, it just caused too many issues (Cardiac). I switched to Nubeqa and Couldn’t be more pleased. After 15 years, I’ve been undetectable for 20 months on Nubeqa. On abiraterone I was only undetectable one month in 2 1/2 years.

I know a lot of men of all ages using Nubeqa, many as their only drug.

The estradiol patch has the least side effects, but is not really been FDA approved and doctors are not using it unless pressured, frequently. If you are interested, over at Ancan.org there are videos by Richard Wassersug about using estradiol, He has done it for years.

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The Zytiga is in fact what the oncologist recommended today for two years. Reluctant to sign up for that wit an undetectable PSA right now. She also ordered a pet scan, anything that showed up on it would likely be reflected in PSA levels yes? Would a different type scan be better in your opinion? Thanks again!!

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A PET scan is a good idea, But if your PSA is undetectable, it is unlikely to show anything. Is it a PSMA pet scan she set you up for. If you have a large metastasis that might show. Considering Your history I wonder what it is that Makes her think a scan is necessary now, You’ve gotten over both surgery and radiation, not that long ago.

You should ask your doctor her thoughts on why she thinks a PSMA PET scan would really show anything with your PSA so low. You could do this in an email.

If you have a previous CT scan to compare against, that might be an idea. Not great.

An Axumin or FDG scan may show something, The FDG would show cancer better I think.

Usually people just don’t get tested when they’re undetectable.

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