Hi, I am pT2cN0M1, mCSPC.
Anyone have an experience with hormone-sensitive first ADT treatment of Zytiga / Aberiterone rather than more typical Lupron? If so, can you share?
If others haven't been treated this way but have relevant info, that would also be appreciated.
Regards, Jeff
The common use of Abiraterone Acetate is to combine it with ADT (ie Lupron). It could be used mono but I don't believe there is much research for mono usage.
Was prescribed Nubeqa as a mono therapy. Docs finally concluding that Lupron does a lot of damage.
The SOC would be Lupron With Abi/Pred.
Not mono therapy of Abi. You are M1 or are N1 as in your last post???
I'm on Abiraterone (ARPI) + Firmagon/Degarelix (ADT, for me this is better than Lupron now). Search forum and you can see my notes on all this (this forum is tricky to search especially if the notes are replies and not posts). Also did Docetaxel chemo (all adds up to "triplet therapy" - as I am metastatic and high volume).
If your MO has prescribed you Abiraterone, to my mind this is a good thing, without understanding your medical circumstances. In combination with ADT this is doublet therapy.
This is up to date therapy and a new generation drug. While other people have had side effects of different kinds, and from the research apparently a small percentage of people have serious side effects, in my case so far I have had few side effects.
I presume you are new to this whole business of prostate cancer therapies. So while I have said I have no side effects, of course I am enjoying zero testosterone. This is a deliberate primary effect. Of course you know all about this now.
The single most important thing that you must do, and I don't apologize for saying must do, and you may already be doing this or know about it, but this is you must exercise a lot. I was told very little about this a year and a half ago and only through this forum and other reading came to understand the importance of this.
Exercise is the single most important thing you can do to maintain or improve quality of life - and there is some evidence that you can also very positively affect the trajectory of your cancer. As long as you're not crazy, exercise is likely to be very safe.
I've also learned that exercise science is kind of complicated and there's a lot of "not that helpful" journalism out there. What I've learned can be summarized as do both aerobic and strength exercises. And more exercise than the American Heart Association recommends is a very good idea. (In my case I have to be careful about the types of strength exercises I do because I have spinal metastases.)
Monotherapy with abiraterone has only been tried in a small clinical trial. In recurrent patients without metastases (M0), 5% achieved undetctable PSA after monotherapy vs.17% with abi+ADT.
ncbi.nlm.nih.gov/pmc/articl...
A recent major trial of enzalutamide vs enzalutamide+ADT proved that the monotherapy was inferior.
Mr. Terminal, after seeing both my MO and RO, they confirmed I am pT2cN0M1 oligometastatic (as Tall Allen accurately corrected me). The plan right now is to hit the active lymph node (inguinal) with SBRT, and then hold off 3-6 months, review PSA, and begin abiraterone then. I am going to ask my MO about including Lupron at that time. When asked about time to castrate resistance, my RO's perspective was that, since it has been 16 years to reach this point, TCR is likely to be on the longer part of the curve, perhaps 4 years.
John, I agree with you - I believe that no one would give me advice to park my rear in the recliner and vegetate rather than exercise my butt off. I am in the process of increasing my activity level, but will redouble my efforts, especially since last time I got SRT I suffered from severe fatigue. I previously was running multiple half-marathons and one marathon along with weight training before needing a lumbar fusion and now with a bone-on-bone knee. But I won't use that as an excuse since there is a lot I can do aside from the present 7k-10k steps / day. I am adding in weights presently.
I acknowledge that the SBRT is only really "pulling out the largest weed" and that I need to go on systemic HT in the short term, but I do prefer to hit it than leave it there.
Thanks for the advice, all - I appreciate your inputs.
Jeff
This is my thought, I am not a Doctor.
But what worked for me:
Get Lupron along Abi/Pred, start radiation AFTER your PSA is <.1 .That softens up the PCa to be more easily eradicated by radiation. (Stated by my RO not me)
I had 1 Lymph node too, ADT was doing its job albeit slowly. I had radiation, and the lymph node has NED 3 months after EBRT.
I see your lymph node is not in the typical radiation treatment field. Your PCa went south not north. Ask your RO if they dont think you should get surrounding ones too? You might be doing whack-a-mole.
My husband has bone on bone in his knee. Do you ever think about getting a knee replacement?
Terminal, my understanding is that this lymph node is unlikely to have become active due to flow of lymph to the destination, but in an unknown manner since it is metastatic. I don't know if that has any bearing on the surrounding lymph nodes, but it is clear in the scan that the one node is glowing brightly (SUV max 19.7) and nothing in the proximity is. I'll ask about starting ADT earlier.
I do take it that the fact that it was so readily seen in the PSMA scan means that this is an effective diagnostic tool for my case.
I don't doubt we are in the whack-a-mole stage already; I am not looking at this as curative, but rather to slow / kill the most active site.
Thanks, Jeff
Inguial lymph node is a draining path from the prostate. Why would you think otherwise?
One lymph node, Im familiar with, I had one pop up 4 years after a clear RP. Max SUV of 24
The theory from my MO and RO are that prostate cells were very slow to grow, and PSA detected it. I was also told that if it's visible in one it most likely will be in surrounding nodes, albeit not detectable in PSMA scans. So they do all.
Please keep us updated on the results.
My son who is 51 takes all three medicines: generic Zytiga, prednisone and a Lupron injection every 3 months. He is a high risk patient tertiary five and has also had six weeks of IMRT radiation. His PSA jump to 22 two months after RP. PSMA,PET scan showed that it had spread to some of the nodules in the pelvic area, but no further. When he underwent the surgery, we thought it was contained, but it wasn’t. I hope that helps.
Terminal, it was explained to me that the inguinal lymph node is NOT a drainage path from the prostate, and that is why a tumor there is considered metastatic (M1) rather than N1. If you know better, please refer me to your source.
Kind regards and thanks, Jeff
I was told N1 is nearby lymph node,
M1 is distant lymph node. M1a to be exact.
So yes we agree there.
2 paths to metastatic. Lymph fluid and blood.
That validates the need for systemic treatment
I have been on Lupron, Abiraterone, and prednisone since July 2019. Had gleason 10, prostatectomy(Jan 2019). Surgeon took out 19 Lymph nodes with prostatectomy.
Have had 2 PSMA/PET scans....1st Jan 2023 showed lesion at T11 and radiated over 5 treatments....2nd scan in Sept 2023 showed all clean and only remains of T11 lesion.
PSA has remained at <.01 throughout. Usual shitty side effects of hot flashes, muscle loss, and fatigue. Walk and play chucking with dogs daily and just started physical training to combat SE's. Overall, the ADT has worked well with the cancer but must deal with SE's.
I started Eligard 6 weeks ago and abi/pred at the same time. After about 2 weeks I developed a pretty bad cough, intolerable actually, and, afraid to choose a cough suppressant, I chose to stop the abi/pred since a bad cough is one of the side effects. However, no one I have talked to has had any previous experience with a cough developing after taking it. In any case I would like to hear from anyone who might know something about this. I will be 76 when I start 5 weeks of radiation in another few weeks. (I got a prescription cough medicine from my oncologist and after 10 days the cough is almost gone.)
Erleada + Lupron since April 2020. I'm doing so well I'm temporarily stopping Lupron. Two successive years of no tumors on the scans. It's not over and IMHO it's not about the side effects although they're not too fun in my experience.
I also take ~80mg twice/day of full spectrum CBD oil because it's shown to discourage tumor growth.
The point is the cancer is not going away on its own. It's not going to put up a white surrender flag. Don't listen to the naysayers; start a therapy and stick with it until it proves it doesn't work and you have to switch to something else. If you take a full or partial vacation do it in conjunction with your oncologist.
Best of luck.
I have had success with your combo Zytiga and Abiraterone, 6 mos, big difference when I added Zytiga down to .31 PSA last check, it was explained to me that Abiraterone takes out testes Testosterone and Zytiga takes out remaining amount produced by the adrenal glands, I guess takes out what could be produced by the tumor itself. I am no expert for sure, just what I was told.
Since I was DX more than 11 years ago, I only started treatment with Lupron, since Aberaterone was not yet available. (I also had my prostate removed along with 36 lymph nodes- only 1 of which was "dirty". I also had my largest tumor radiated after 2 years of treatment and went on 3 "vacations" during my forst 5 years of treatment). I started Aberaterone a few years after DX and was started it before most others, as my MO at the time, Howard Scher of MSKCC, was heavily involved in the testing and research.
The side effects (loss of sex drive, weight gain, loss of muscle mass, "manboobs", hot flashes, some tiredness, among others) are unfortunate, disruptive and definitely impact one's QOL, but I find them more than acceptable since I am still able to enjoy life, spend time with my wife and watch my 3 boys grow up. It appears from recent lab tests that the treatment is becoming less effective for ME as my PSA has risen from less than .05, to .05, to .06 and .06 again and last week it hit .09. but it "worked" for me for 11 years.
I wish you the best and suggest you look into tamoflaxin (to help prevent "manboobs"- something I never learned of until it was too late to prevent mine). I also HIGHLY suggest you exercise regularly. Exercise helps fight the cancer, strengthens your depleting muscles and your BONES and will make you feel better overall. I recently bcame a Pickleball fanatic which has been great for my weight, muscles and my MENTAL STATE.
I hope you respond well to treatment. Good luck!
Do you recall how long it took to develop your “moobs”?
I’d prefer to avoid them if I can but don’t know when is the best time to use radiation or tamoflaxin.
Just Lupron here. 5 years now. 3 or more bone Mets at the start. Gleason 8-9.
Zytiga + ADT OR Taxotere + ADT?! Advice please.
Adding Zytiga to ADT
Aberiterone side effects 
Treatment post ADT failure?
STAMPEDE - Zytiga at ADT initiation.
