Hi all, I’ve been reading many posts on here learning so much to try to understand this disease and treatments. You all have my utmost respect for your courage, knowledge and kindness. So after fully recovering from RALP (all plumbing working with a little help from Cialis) my PSA has start to rise from undetectable (Full info in BIO) to currently at 0.14.
I will be participating in a Trial (code name Formula 509 at Dana Farber) starting Monday 6/10. ADT for 6 months consisting of Lupron + Zytiga (Abiraterone) w Prednazone + Etealda (Apalutamide). SRT starts in 6 weeks.
While I’m hopeful this aggressive treatment will successful, I’m concerned about the side effects by this combo of treatment. The literature is scary.
Any thought appreciated.
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Mikeski
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First, not every RO is convinced that ADT is needed at all with SRT when the PSA is below 0.5. But if you want an aggressive approach, It looks like a good trial:
But side effects are the price one pays for an aggressive approach. A recent trial combining Xtandi and Zytiga showed no extra benefit from the two agents but side effects were worse. Will Zytiga+Erleada+ADT work any better than ADT alone or without ADT at all?
Thanks for the response. That’s the question I guess 🙂. My PSA has been rising fast from what I can deduce. Concerned about that. My thought is that if I don’t benefit maybe someone else will.
There are not data I know indicating that combining Lupron+Xytiga+enzalutamide to salvage radiotherapy in BCR offers a survival advantage. I assume the clinical trial will try to answer this issue.
There are some data using lupron or similar with abiraterone plus radiation for localized prostate cancer:
There is another study indicating that short term simple ADT (4-6 months) plus radiation to the prostate fossa and pelvic lymph nodes (whole pelvis radiation) offers 89% progression free survival. at 5 years.
To me these numbers are a pretty good, I assume that goserelin (or similar) alone will have significantly less side effects that combining a drug like lupron with abiraterone and enzalutamide.
This direction is the current trend for trials. I have been working on developing a phase II, multi-center single arm trial that will combine Lupron, Zytiga, SRT, and a PD-1-L1 (immunotherapy treatment). We just received funding from Stand Up To Cancer and are working to finalize the financial arrangements with them.
Interesting, it’s encouraging to hear trials are getting funding to hopefully learn to better fight this disease. Good luck
Side effects are easily managed. Just discuss with your MO and they will come up with an answer. And, it is does not work. Discuss that. Dwell on the fact that you are killing the little bastards and smile.
This coming from nine infusions of Adrimyacin alternated with nine infusions of Taxotere over a six month period in 2004. Plus, either Erustamine and Ketokonazole alternated with the infusions. Plus Prednisone daily. Every side effect was managed except for weight gain and that was my fault. And, of course, the three month injections of Lupron/Eligard.
I never had apalutamide , so i can't speak of it. But I have been on Lupron intermittently for over 7 years, which i now take continuously. I ws also on Zytiga with Prednisone for a few years on-and-off , whenever I took a break from the Lupron. Now, my doc has me only on the Luporn. Of course, the Lupron has may side effects- the noticeable ones for me are: loss of sex drive, lack of energy (although I have gone skiing and hung in there), "man-boobs", which I am really unhappy about, amongst others. Having said that, I am grateful to put up with these effects if it means I get to extend my life. The main reason i am responding is to let you know that I don't believe the Zytiga and prednisone made things any worse.
Thank.you and agreed, I will do what I can to keep this at bay. Happy to hear you could get out and ski as that activity gets me through the winter, though I finish Lupron in Dec. I plan to exercise as I’ve been reading folks say that is helpful with the fatigue. Hopefully I’ll have the motivation to break through the fatigue inertia
Well Mikeski ? I’ve been on a test drug four years now. They do thorough testing of you regularly and watch over you . It’s a good thing . It sounds like a good plan to me . Similar to my own . I went into a no visible signs of pC just six months after dx. I did 8 weeks radiation.. My thought is be aggressive in the first round and go for a knock out .. if we don’t hit it hard it will level us quickly ..better to stay on top of it then for it to ride into the Abyss. Keep rolling . Your treatment plan can work . Dude effects will come . Done don’t get much . I’ve had most of them
.Live healthy .. find happiness in all of this . Please tell yourself every day that you can put this PC down hard . It’s no friend of us . Use all of your resources . Don’t listen to anyone negative telling you that you’re done . Sorry that you’re here . We just play the cards were dealt . I try to turn around he odds in my favor by going aubmatural in food and nutrients . Done guys don’t make a change and still live for years. Several members gave over two decades tangling with our aggressive friends. This APC is long winded and can hide for 6 weeks six months six years or sixteen years . It inevitably returns if you’re stage four . We walk the line after dx . Appreciation will come once you gain the upper hand on this beast . Then you’ll be able to sigh and have appreciation of what you do have.. life .. not until then . It’s a rough psychology for us guys and those that love us . There will be suffering and losses . Retaining sanity and forging daily happiness are goals . If a schlepp like me could eek out dome years of mostly good then anyone could . I do have live at home and faith in a higher power . You’ll be able to do whatever it takes to survive with this disease.... welcome again .. Scott
Thank you Scott and thanks again for reaching out and welcoming me. It’s been a relief for me to find a group of folks I can ask questions and learn from. I’m encouraged that all who have replied have thought that my treatment plan may have benefits. I have also already started to look at life as moments to be treasured and lived purposefully and positively.
If not now, when ? A lot of stuff we must deal with to put our thoughts in order .. we can relate to each other at times when outsiders can not ..who can you really talk to about this mess? only each other. There is strength in numbers . It like getting clobbered up side the head with a two by four .. Then we real around and try to get our bearings .. Hang in there Mikeski... it’s a bumpy road .. shirk the bad and concentrate only on what’s good in life . Peace to you brother .. cure yourself .... I’m making major moves for my wife’s future right now . Sold our cabin ,selling home and downsizing to a more temperate climate of Prescott Az.. I don’t expect to live to a very old age . If I get a few more Years without way too much misery I’ll be happy . Life and death are above my pay grade ..I leave that to the man upstairs . I don’t want to go out bitter and remorseful . F that brother . There are worse things than death . Let’s walk in peace ... Things can get better but they also can go south at anytime . Hell of a way to live . But that’s where we’re at . In limbo . What are you doing Oct 4-5-6 . We ‘re going to grab a house in NewOrleans and cut loose on diet .. I invite you if you care to go ? . Otherwise thanks for replying . Take care Scott in Tucson 🌵☝️
You speak the truth. Haha, when you say more temperate I think warmer, but I’m from south of Boston in MA. I see it’s 105 in Tucson! Good luck with the changes. I’ll talk with my wife and get back to you regarding New Orleans. That sounds fun!
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Phase 1 trial participation Nurix NX-1607
Bloodwork after 4 weeks of SRT and 6 weeks of ADT
STAMPEDE TRIAL K ARM METFORMIN PARTICIPANTS
Big decsions regarding SRT/ADT due to BCR post RP
