Should I be seeking extra treatment?
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
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
For severe ED Trimix or Bimix injections can resolve the problem.
You can try a penis pump. It may not get you stuff enough for intercourse, but it will get you pretty stiff.
They didn’t get an implant which allows you to get an erection when you want to. These have a very high satisfaction rating.
Thanks Jeff, I’ve been using a pump a few months now to try and keep muscle tissue and I does work but as soon as pump is removed the blood is a goner 🙁
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.
Thanks again,
I will inquire about Nubequa. He originally said there was no alternative but I see that is untrue. I’ve read here about better outcomes with additional adt therapies, usually Orgovyx and erleada iirc.
I’ve been on Orgovyx for 1.5 years and Lupron for 7 before that
I prefer Orgovyx for convenience, but the side effects are the same for me.
The pump should’ve come with a thick rubber ring that you put on the end of the pump tube, and then put it on the back of your penis after you get it erect, remove the rubber ring. As you take off the tube.
I think its a matter of getting use to the devise . The band has to be put in place prior to you releasing the pump - thats the trick in using it . Works wonders on your muscles and tissues for blood supply etc .... God Bless Sir ! Praying for you !
Hi Jeff - what ADT drug has worked best for you and what one has the least side effects? I should know this stuff , for fellow friends at PC zoom meetings . I have never been on ADT . Post surgery 6 years now , 2.5 years post Salvage . Gleason 3+4 , PSA was 4.0 prior to surgery . Now after 22 sessions of radiation 2.5 years ago I am at 0.06 - 0.032 range . its still bouncing around a little , but this is where im at . Feeling good and hiking everyday with dogs. Prior to 22 sessions of EBRT / Salvage I was climbing very slowly to 0.14 , when I got Salvage done. My profile is OK ? Thanks Sir . James
I’m a little confused. There is the ring that I assumed I put at base for penis at the start. Then the big rubber end with the hole that is placed on end of tube, are you saying to leave that piece on after tube removal?
You leave the rubber ring on the end of the tube. Once you’ve reached full erection, you roll the rubber ring on to the base of the penis and pull off the tube. The ring is supposed to keep the blood in the penis.