Would like help in treatment options.

[agyoung]

Quick recap: 2011 I saw a doctor form the phone book. I was an airline pilot and one never goes to their FAA AME for any problems less you lose your FAA medical and career. The doctor wanted to do a quick physical because I was a new patient. I saw him because I had a sinus infection that needed antibiotics. He did a DRE and asked when the last PSA I had was. I had never had one so they drew blood and got there results in about 20 minutes. PSA was 68.5. Sent immediately to see a urologist who did another PSA and biopsy. All 12 cores came back as Gleason 5+4y and 7 of the needles were bent, which he had never seen before. Bone scan and CT scan were clear. Had RP and then 2 months pelvic radiation. I was given 18-24 months of life expectancy. I began seeing an oncologist at Tulane who is well regarded and began 6 month Eligard injections and daily sodium bicalutimide. This continued for 2.5 years and I decided to have one more Eligard injection. The PSA began a slow decline over the first year to undetectable and stayed that way until 2018. My oncologist suggested I start taking Androgel for QOL. My testes went on strike and T level even after 3 years off ADT was in the low teens. He thought my QOL was miserable. I hesitated but decided to try it and see what improvement I would see with some testosterone. Unfortunately the T averaged about 120-130 ng/dl every month but the PSA started climbing immediately. Once the PSA reached 3.16 and was doubling every two weeks I ceased the Androgel not telling the oncologist. The improvement in the QOL was not worth killing myself for. The PSA began dropping by 1/2 every other month as the T went back to about 11 ng/dl. I am still castrate sensitive, obviously. I had a FL-18 Scan in Dec of 2021 and there were numerous spots on my spine, left shoulder, ribs, and one large one in my left lung. An Auxin ? scan 10 months prior was clean. The question I have is I am still castrate sensitive and would like to preserve that as long as possible, of course. In the course of reading these forums it seems as though an anti androgen (Enzalutimide, apalutimide, etc) added to ADT is beneficial in a castrate sensitive metastatic patient. Myon oncologist is still recommending staying on Androgel because, and I quote " you are going to die so you might as well have some QOL with the Androgel. I'm reserving judgement of him because he is so well regarded but I can't get any answers from him regarding avenues going forward, what to expect, etc. I didn't fully realize until a visit with my urologist for a bladder cancer clean up that the castration sensitivity ends at some point for every one. I have been riding along thinking I could stay sensitive for years. When the FL-18 scan was gone over with my oncologist I was asking for his thoughts and the only answer I got was " well, they shouldn't be there". It just seems to this layman that an anti androgen might be of additional benefit to me but I was told that that would be only for metastatic patients. Which I am. I remain terribly confused, befuddled, and curious.

Any thoughts would be most appreciated. Tall Allen is the biggest wealth of factual, thorough, and unbiased information and If he would reply as well I would be most relieved.

Sorry for the lengthy diatribe. Just getting nervous and anxious in this endeavor.

Thanks to all.

Alan

[Tall_Allen]

Thanks for the vote of confidence, Alan.

Castration resistance means that PSA rises in spite of being on ADT or that new metastases are detected on imaging. So you are castration-resistant. The only upside is that qualifies you for a whole slew of medicines you wouldn't be able to get if you were castration sensitive.

You haven't yet had docetaxel, which is the next reasonable step, IMO. IMO, it's better sooner than later. Discuss combining it with Provenge - they may work synergistically.

After that, you can move onto a radiopharmaceutical. Pluvicto is possible if your metastases are avid on a PSMA PET scan, but I suggest comparing it to your NaF18 PET scan.

Xofigo is possible if there is bone pain. . The docetaxel will address the lung lesion detected on the CT scan, but your insurance may not want to approve Xofigo because of it. Xofigo can also be combined with abiraterone or enzalutamide, if you also get Zometa. Ask for a DEXA scan to check your bone mineral density.

If you are still seeing Oliver Sartor, ask him how his trial of Th-277-PSMA went and if there will be another trial. It is sort of in between Pluvicto and Xofigo.

It is also a good idea to biopsy one of your bone metastases for histology, IHC and genomics.

[agyoung in reply to Tall_Allen]

Thank you very much for the quick reply. I guess I am miss understanding. Since the PSA is decreasing quite quickly with the absence of T Androgel) wouldn’t that necessarily mean I am still castrate sensitive? In my limited knowledge I thought castrate resistant was increase in PSA in spite of castrate level testosterone.

And thanks very much for the reply.

[Tall_Allen in reply to agyoung]

Usually it is, but if you have new metastases when the testosterone was stopped (and you were still on ADT) that is an even stronger proof of castration resistance. It probably means that your remaining metastases do not put out much PSA.

[agyoung in reply to Tall_Allen]

Thanks Tall Allen.

I guess my explanation wasn’t sufficient. I had nothing detectable on an Auxim scan prior to starting Androgel. The Fl-18 scan occurred about 11/4 years after being on Androgel which showed bone Mets and a lung met. The PSA reached 3.61 shortly after and I ceased Androgel. The PSA is coming down quickly; the last was 0.12 about a month ago. But no imaging has been don since the PSA has decreased considerably.

Yes, I am seeing Dr. Sartor. I read too much and I think he thinks I am more knowledgeable about all of this than I am so he provides little guidance.

I’ve said it in a PM to you but I’ll say it again. You are a tremendous asset to the people of this forum. Truly remarkable and very much appreciated. Thank you.

[Tall_Allen in reply to agyoung]

Sorry- I misunderstood.

So you have never been on ADT since 2018? If not, you should be on it now. Metastases are a sure indication for ADT. If your PSA continues to go down on ADT, there is no need to use anything stronger. Since you never got relief from TRT, I don't think intermittent ADT would serve any purpose.

[agyoung in reply to Tall_Allen]

I’m having trouble explaining this and I apologize. After 3 years of no ADT (Eligard and Sodium Bicalutamide) it was discontinued. After 3 years of no ADT my testosterone level never rose above 14ng/dl. I did not have any testosterone recovery. I began Androgel in 2018 which brought my testosterone up to about 120-130 ng/dl. I was not on any ADT for that time. After 18 months of Androgel I became uncomfortable with the rising PSA. A FL-18 scan was given and showed Mets on my spine, shoulder, ribs, and one lung. I ceased the Androgel and the T dropped immediately and the PSA began falling quickly to the latest a month ago of .09. I apparently can’t have another FL-18 scan until the PSA rises to 2.0. Dr. Sartor called a few minutes ago and is very happy with the rapidly reducing PSA and is considering adding apalutimide. He doesn’t really think it’s necessary and there are drawbacks from using it when I become resistant. So I need to look at tat aspect before I begin taking it. But part of the confusion was he has so many patients that he mixes them up sometimes while talking on the phone in the car.

I’ll look into the advantages of apalutimide.

Thanks again for all of your help Tall Allen.

[Tall_Allen in reply to agyoung]

The only times when advanced hormonals like Erleada have been used is when PSA is increasing rapidly. Erleada can have a lot if side effects.

[agyoung in reply to Tall_Allen]

Thanks Tall Allen,

I spoke to Dr. Sartor and he agreed to put me on abaritarone if I would like. I think I’ll pass because there can be complications down the road in doing so now.

I need to quit reading all of this stuff I know nothing about!

Thanks again for all of your input.

[Tall_Allen in reply to agyoung]

There are so many different situations/settings that patients are in - recurrent, persistent, recurrent with SRT to prostate, recurrent with whole pelvic SRT, recurrent with high volume metachronous metastases on PET, etc. it is hard (even for me!) to read about a therapy and understand which setting it applies to and which setting it doesn't apply to. With molecular assays and imaging, it gets even more complicated. If I am able to keep it all straight, it is only because I only look at prostate cancer. I don't know how some oncologists, even those who only treat a few different kinds of urological cancers (e.g., bladder, prostate, urothelial, testicular) manage to stay on top of it all, especially those like Sartor, who has a large patient load, creates many clinical trials, publishes frequently, and mentors other doctors.

[Concerned-wife in reply to agyoung]

we have had a similar experience. If the dr knows you know a lot, then they seem to skip the discussion. Gosh, I have loved Dr S communication on videos. Surprised at your experience in person.

[agyoung in reply to Concerned-wife]

He is wonderful. I just read too much and he knows it but he doesn’t know what I don’t know and I am inept at asking the questions at the meetings.

[dixiedad in reply to agyoung]

That is so true. BTW, which airline? I flew for TWA and Nippon Cargo.

I wish you all the best.

[agyoung in reply to dixiedad]

Hello Dixiedad,

Flew 727’s and 757’s at Tway and the same plus the A320 at Transmeridian. 767 at MaxJet. I would have done it for free. It was definitely in the blood.

The best to you too!

[dixiedad in reply to agyoung]

Yeah, I miss it. My first jetliner was the Convair 880. Then 727, 707, 747, with the Lockheed 1011 in there somewhere. 1011 was my fave. Once landed at Heathrow zero-zero. Way ahead of their time.

[agyoung in reply to dixiedad]

the 1011 was so far advanced. I rode on the jump seat with Delta many times to and from work (always a commuter) and loved sitting in one of the jump seats. Fascinating airplane. The Rolls RB211’s sure caused problems initially but it became just a fantastic 3spool engine. We had 757’s with the RB211 and PW3700 and the PW version was pathetic in comparison. But 37,000 lbs thrust for the PW and 43,000 lbs on the same 250,000 lb airplane made a big difference. I loved the 72, hated the A320, and loved the 75/76. Check airman in all 4.

I hope you enjoyed your career as much as I did. I had to retire early at 58 because of the pc.

Take care!

[Hidden]

Welcome agyoung! Might I ask , how old you are Sir? You’ve done a lot to fight this . I’m not an expert and I don’t have medical advise for you . I’m commenting on stupid things Docs say and do . I can’t comprehend why this doc changed coarse while you were still undetectable? Water under the bridge now . You are not resistant anymore . Others with chim in on what action to take . However, I really disagree with the doc saying you’re going to die anyway so it doesn’t matter. That’s complete bs . My uro told me the same.. I was given a50/50 shot to survive treatments ( imrt 2 months like you plus Lupron and another test adt drug. ) My prob was K failure due to pc tumors blocking urethra and bladder . Then tubes into kidneys and a foley for over a year of hell . then internal stents for another nine months . The uro gave me 36 months ,no matter what i did . I went undetectable after imrt . I did an orchiectomy 2017 and dropped the shots . I continued on my test adt drug until a few months ago . I tossed it . I’ve have Psa< .1 and 3 T only for seven yrs . My issues are all from no T now . I’m pulling for you push this down again . We must figh5 for our life . No one wants end stage pc . It’s a brutal bitch . We are all going to die ! Correct . But don’t feed into that negative bs . You can do better than they say . I hate to see a man with such a career with this . Prayers for healing to you! Stay strong ! 🙏

[agyoung in reply to Hidden]

Lulu 700,

Thanks for the reply. I always enjoy reading and learning from your posts.

You have certainly been through the ringer and then some. I couldn’t imagine. I am so glad you are where you are now. Your prayers are much appreciated and returned in full. Thank you.

[agyoung in reply to Hidden]

I forgot to address your question. I just turned 67. Diagnosed 11 years ago.

[Hidden in reply to agyoung]

11yrs ? Wow ! That gives newbies hope . Even me . Take care ! God bless! 🙏

[Vynbal]

WRT QOL, a friend who has been living several years w high risk (Gl 9) PCa has been on estradiol patch (in addition to orchiectomy) and says he feels great, and highly recommends estradiol to men on long-term ADT

[agyoung in reply to Vynbal]

I have read quite a bit about alternatives such as estradiol but too chicken to try. I don’t need an orchiectomy as my testes never tried again after 3 years on Eligard/Casodex. In my case I’m afraid I might grow a third arm or something:).

[MateoBeach]

Hi agyoung. It appears to me that TA did not fully understand your history.

You had progression to metastatic while you were not in a castrate state due to the Androgel. When you dropped that and T returned to castrate range then PSA declined. This shows you are indeed still mHSPC and not castrate resistant.

Your treatment should include an AARSI drug such as abiraterone +p or darolutamide or enzalutamide in addition to ADT at this time. It should not be saved for later because the combination actually delays progression to castrate resistance because there is slower replication and mutation accumulation. Dr Sartor, very smart, is very aware of this and will confirm it.

You still have those other options that TA mentioned. Many arrows in the quiver. Personally, I favor a bone protecting regimen at this point regardless of bone density on DEXA. And it, as well as with Xofigo, combines well with Provenge if you can get that approved.

It is unfortunate that the doctor who prescribed the androgel does not understand the principles. You had low T levels while on it. Not enough to restore QOL and certainly not enough to suppress PC growth as is used in BAT. For that one wants T levels more like 1200 to 1500. Otherwise the low levels but above castrate levels is the worst place to be. No man’s land.

Good luck. Be S & W as we say. Paul

[agyoung in reply to MateoBeach]

Hello MateoBeach,

You put it succinctly for me. I just didn’t explain it correctly.

I talked to Dr. Sartor yesterday and he advised that he would prescribe aberiterone and prednisone today but that it might be better if I waited until it was “more necessary “. I didn’t ask him to explain except he mentioned additional side effects as well as limiting options in the future.

I guess I will start taking it today.

I apologize for being quite ignorant in this PC adventure. I was diagnosed and given 18-24 months to live. A year later my wife packed up and left after 36 years of marriage after I had signed everything over to her to avoid probate after I passed. When all was said and done I just followed what Dr. Sartor proposed and didn’t care that much about it. But he has kept me alive this long and I got remarried to a very remarkable woman about 7 years ago. It’s strange how you can go from the very bottom of life and events happen to reverse misfortune. Call me very thankful!

[MateoBeach in reply to agyoung]

Wow. What a terrible hand you were dealt. Glad you were able to endure and survive, emotionally as well as physically. And the opportunity emerged to find a new and true love partner. The Phoenix rises and flies! My kindest regards and respect to you. Paul

[agyoung in reply to MateoBeach]

Thanks MateoBeach. I love the reference to the Phoenix! Many thanks to you.

[Hidden in reply to MateoBeach]

Great explanation ! 🤙🏽