74 yrs old, initial PSA 16. Biopsy Gleason 4+3 with mets to presacral lymph nodes as per PSMA scan. 45 radiation treatments ended Dec. 2 started Eligard Oct 8.
December 23rd PSA 0.16, T <10.
Urologist wants to add abi+ prednisone to Eligard for total of 24 months. Currently only minor SE with Eligard. Although no pre-treatment cardiac issues have concerns about cardiac SE from my readings. Looking for opinions and advice from this group which I highly respect.
I would stop with Eligard and just observe. You did not get the radiation to get ADT forever.
Thank you. So are you saying no more Eligard either or just that alone for 24 months?
I am sorry I misunderstood your post. I understood that you had surgery followed by radiation.
With a Gleason 4+3 you are at the lower end of high-risk. However, the guidelines recommend 24 months of ADT in this case. 18 months could be enough according to a recent trial. However, the guidelines recommend just ADT, not ADT+Abiraterone. Whether adding Abiraterone is beneficial I can't tell. There are trials for that but I do not recall what results they had.
Thank you. It seems that 24 months is the consensus. I also am unsure of the absolute benefit of adding abiraterone.
You mentioned that your oncologist refers to the Stampede trial. It is probably this study: oncologypro.esmo.org/meetin... oncologypro.esmo.org/meetin... and urotoday.com/conference-hig...
I was on Lupron with Abi and prednisone for about 18 months after my RT, which was the SOC at the time. I believe the SOC now is 24 months of ADT after RT. Did I wish I wasn’t on ADT after RT? Absolutely. I always want to be off of ADT and I’ve taken four ADT vacations. But I reluctantly agreed with being on ADT following RT. I felt it was the proper thing to do. In very layman’s terms, because that’s all I can speak, my understanding is that while RT kills cancer cells it also wounds and weakens cancer cells. ADT after RT helps finish off those weakened cells. They might ‘recover’ without the ADT.
Thank you. I wholeheartedly agree that, even after only one 6 month injection of Eligard, I wish I wasn't on ADT. Perhaps an overinflated worry about cardiac SE’s is affecting my reasoning. On the other hand, I don’t want to be in the position of recurrence because of being short sighted and worried. My dilemma comes in deciding whether or not to add the aberaterone/prednisone that my urologist is recommending in light of my significant PSA drop after RT and initial Eligard.
Also, if you don’t mind me asking, how well (or not) did you tolerate the Lupron + Abi combination?
I guess I’ve tolerated Lupron and Abi pretty well, though it has been very annoying. But it could have been much worse. I’ve gained weight and have relatively mild hot flashes, I suffer fatigue, annoying not horrible. I still run, much more slowly than I used to, and I still go to the gym about 5 times/week - weights and swimming. Yesterday I went skiing.
As long as I can keep up my physical activity I feel I’m doing okay.
Sounds like you’re doing ok and dealing with this. Keep on fighting and keep positive thoughts.
Just watch for resistance and stop when you see it. Take a break. For me it's been intermittent ADT with Natural ADT continuously. It's worked for me for 12 years now. I don't like Zytiga.
Thank you. So happy to hear that IADT has worked for you for such a long time. Curious as to what is Natural ADT. What about Zytiga didn’t you like?
I had spread to 10 lymph nodes on PSMA when diagnosed with Gleason 5+4, and I had RT + whole pelvic radiation + Hdr brachy (due to the Gleason 9) and was on Lupron + Abi + Pred for 24 months, I read the Stampede trial back when I was diagnosed and adding the abi at the start of ADT sure seemed to make a difference in the study, and I’m still undetectable (psa < .04) 7 years after starting the hormone treatment (5 years after Adt completion in January 2020). I don’t think the ABI added much additional side effects, but I also took Prazosin to help lower BP and help flow, and there’s a retrospective study that showed Prazosin can also fight PCa after radiation. So I recommend trying the abi+pred, you can stop the abi part if you can’t tolerate it well. You also might be able to make the argument that you could shorten your total time on adt if you take it since taking both is more effective than just Lupron alone.
So, I think you should start the abi right away.
BruceSF, what you say makes perfectly good sense. So happy to hear that you are doing well. My urologist is also using the STAMPEDE study as the guide for me with a two year recommendation for Eligard and Zytiga. You are very encouraging. Congratulations on still being undetectable.
My husband was diagnosed with Stage 4, metastatic, advanced Gleason 9 prostate cancer in November 2023. He’s been on abiraterone and prednisone tablets, as well as Eligard injections every 3 months. He also had 28 IMRT radiation treatments. His PSA has been undetectable for several months. And he has very minimal side effects with the hormone therapy. Mostly just loss of libido and some hair on his chest. He’ll be on this regimen for at least 2 years or unless he becomes castration resistant and with need to try something else. So far he’s responded very favorably.
I meant to ask if you have a medical oncologist. My husband has all three doctors; Urologist, Radiation Oncologist and Radiation Oncologist.
I’m so happy to hear about your husband’s successful journey. Also very glad that his SE’s have been minimal. I have seen a radiation oncologist and a urologist. The urologist started me on Eligard and then referred me to another urologist who specializes in patients with advanced prostate cancer. He is well recognized and lectures around the country. I am comfortable with him. I haven’t seen or consulted a medical oncologist but I did have a pre treatment consultation at the University of Florida.
Have you considered replacing Eligard with Orgovyx?
I see from your previous post that you are concerned about CVEs. Orgovyx has been found to be superior (can find links if you want).
There are other benefits as well (I can also elaborate if you want)
On the other hand you need to commit to taking it everyday at the same time (the half life is quite low). I use multiple reminders to avoid missing doses. I did miss one and was annoyed with myself and so tightened up my regime.
I use a pill box per day and medications scheduled in apple health with a critical reminder if > 30mins late.
I have given Orgovyz serious consideration for that very same reason will definitely discuss this with my urologist at my next visit. Have the overall SE’s been tolerable?
For me, yes. But I seem to have less severe SEs than many here or maybe people with bad SEs post more.
Plus, I have only been taking Orgovyx 8 months so early days yet.
In any case it is difficult to predict and I think the SEs are mostly based on the reduction of T rather than the actual medication used to do it.
I had no additional (QoL) SEs from adding Abi (possibly emotional swings) but again, early days.
Was on Eligard/Abi/Prednisone for just under 2 years (Docetaxel early on) and this combo took my PSA to 0.01 for the last year on it. Joimed "A-Dream" clinical trial so being studied after I started my drug holiday (Intermittent ADT) a year ago. Stable, but just recently my T now at 35 (<3 prev) and PSA now at 0.13 Still staying the course. Other than obvious SE's ( hardly any body hair, sex life = celibate, etc) my main issue was the 10 mg Prednisone causing paper thin skin. Would bleed/cut open by just being looked at wrong! Plus weight gain. All other lab numbers stayed WNL for those 2 years. Being off them for a year, definitely less fatigue. My encouragement, gather advice, then make your own decision as to what's going into your body. I decided once started the drug holiday, I would not look back no matter the outcome. I was Gleason 9, BRCA2, and high volume at diagnosis. Surgery and radiation (was told) of no benefit once the horses had really left the barn. Polymetastatic, but scans are very encouraging currently. Best to you VMan1.
I read your bio…you have been through an awful lot and I admire your strength and fortitude. Glad to hear your SE’s have been manageable. Sorry about the prednisone skin issues. According to my doctor, my drug holiday will start after 24 months of treatment. I look forward to that day and like you, will only look forward from there. I not only want to add years to my life but, more importantly, I want to add life to my remaining years. Bless you.
Vman1
Check out my Bio, just about the same, although I am just a bit younger.
Anyway they started me on Lupron and Bicalutamide right after biopsy. 1 month later stopped Bicalutamide and started 1000 mg Abiraterone and 5 mg Prednisone. This was before radiation.
Following IMRT on Pelvis and SBRT on Periaortic, I have continued on the Abi/Pred. The only change is last time they gave me Eligard instead of Lupron.
PSA went undetectable in Jan of 2024, still is today. Total I have been on Abi/Pred with either Lupron or Eligard for about 15 months now. The original plan was Abi/Pred for 2 years and them the Lupron/Eligard for some years after.
The SEs were pretty bad at first. BP went thru the ceiling. MO moved me to 750 mg Abiraterone and kept the 5 mg Prednisone.
This helped but BP still high. Unfortunately the Cardiologist I had been seeing for some years about BP was either unable or unwilling to deal with the Abiraterone and had to go. I asked the MO "Who is the Cardiologist that takes care of the Cancer Patients?" Then BP issues were for the most part resolved. Having the right Cardiologist was the answer on this.
Like others, after the radiation was over I returned to the gym. I walk either in the neighborhood, or at the gym 6 days a week, and hit the weight room 3 days a week. My weight is the same as when I started, and I have the energy to spend time with my grandchildren and on Lawn work hobbies and a bit of travel. . Yes some days i am a bit fatigued, but just muscle thru it.
On a related item, i have not had a beer or wine or such for the entire 15 months of Lupron/Abi/Prednisone/Radiation. Probably am done with that crap for life.
So in summary, there are side effects and they are manageable. I trust the MO and his team, and am doing what they say. I like all of us, have also educated my self on this condition, understand it is generally for life and I plan on living well for a long time.
Best wishes on you decisions and your journey.
Thank you so much for your comments. Inspiring and encouraging. I have started an exercise routine and it really does help with the fatigue and muscle loss. I also have been able to keep my weight steady but am early on in this treatment. The key for me is trust and it’s comforting to hear you say you trust your medical team. I do also but, being who I am, tend to overthink and over worry everything the regarding SE’s of ADT, even though mine have been relatively minor. Once I read about the potential cardiac side effects, well of course, I was absolutely certain I’d be getting them. However, I have no preexisting cardiac history and have had a recent normal ECG and echocardiogram. Hearing from y’all has reinforced my plan to follow my doctor’s advice and, quite frankly, suck it up. Nobody wants to have cancer, but it is what it is and I want to beat this.
Orgovyx would be better choice for you than eligard."Given its superior ability to reduce testosterone and safety with regard to heart-related effects, Dr. Shore said, “it’s perfectly arguable” that relugolix should be the preferred choice for ADT in men with advanced prostate cancer."In addition, men in the relugolix group also did substantially better on several other measures, including being able to return to normal testosterone levels within a few months of stopping therapy.
Orgovyx:Improved Testosterone Suppression, Lower Cardiac Risks and possibility to return normal testosterone levels more quickly.
MY quick reply (as I am in the office) . We for the most part are just average laymen, afflicted with this predicament. Some may be good advisors, some great ones like Tall Allen(Love his very knowledgeable medical insights and J-O-H-N. Love his humor also. If I were you, I would find a competent ,knowledgeable top notch Oncologist. Stay whatever course THEY recommend. For me, that has been "my miracle drug" Zytiga for over 10 years, 1000mg for 6 years, and now only on 500 mg a day, had a few 2 to 3 month vacations along my journey. Fast forward....now 10 years , my PSA is undetectable at .0.06 . My initial PSA was 72,. and Stage 4 with 6 bone mets. I'll write more to you later. Everyones case is different.
I had to look up presacral lymph nodes, though it was in your "sac" but apparently in your throat?'
PS My initial incompetent Urologist told me in 2012, that I would pass away by 2015. I fired him immediately! Still kicking 13 years later, Keep the Faith Brother,
Wings
Wings-of-Eagles. First let me say that I’m glad your incompetent urologist was very wrong! Glad you’re still with us and , hopefully, going strong. I have been reading a lot of these posts and agree that Tall Allen is extremely knowledgeable and yes, J-O-H-N makes me smile and laugh ( the best medicine).
Glad to hear that Zytiga has indeed been your miracle drug. Were you also on Lupron or Eligard or just the Zytiga and prednisone?
Actually the presacral lymph nodes are in the pelvic area. My RO and Urologist were both surprised and intrigued that my cancer spread there but bypassed any nodes in the pelvic area closer to the prostate or the seminal vesicles. So cancer in the prostate and just these nodes. The nodes were initially seen on MRI and both doctors (including the radiologist reading the MRI) thought they were an incidental finding until the PSMA confirmed the cancer there.
All the best.
The STAMPEDE protocol for high risk men with positive lymph nodes getting radiation is 3 years of ADT and 2 years of abiraterone.
Tall_Allen, was hoping to hear from you. Thank you very much. All the best
My husband discontinued Abiraterone mid December 2024, after a year, due to concerns regarding Cardio toxicity. He is still on Orgovyx.
He has a growing (quickly)Aortic Root Aneurysm 5.1 cm, moderate to severe Aortic Valve Regurgitation, and 248 calcium score ins LAD (2023).( ECHO last week)
He had an Aortic Root Aneurysm identified in 2019 that was stable until 2024 after he had been on ADT for close to a year.
He also has elevated LP(a), an independent risk factor for heart issues.
His BP was initially elevated when he started Abiraterone, was put on meds for BP, it stabilized, he went off....than BP started to be unstable again, actually worse than when he was still on Abiraterone.
He is on another BP med, recently doubled, still has unstable BP.
He has a CT Angiogram tomorrow.... right now lots of anxiety.
He was diagnosed with Gleason 9, PSA 46 in August 2023. He was on Stampede protocol for high risk PCA and PSA over 40. Had proton radiation.
MO has been treating him as having systemic cancer due to high Gleason and high PSA. PSMA scans did not show lesions outside of the prostate....so we think they assumed micro mets.
Right now more concerned for risk of death due to cardiac issues, rather than cancer. ( of course cancer still a concern, he also had bladder cancer treatment) in 2020
Husband is 74
Asking for advice
Eligard for me= poison
mcrpc , stage iv with aggressive treatments
Stopping Zytiga after 6months
