I am in my 12th and final week taking Apalutamide (Erleada). I have been taking this new met daily along with heavy hitter Abiraterone acetate (Zytega). Also thrown into this daily mix is Indomethacin and Prednisone. Lastly, to top this off I've been getting monthly injections of Degarelix. I won't go into side-effects here, but it's not for the weak of heart.
I was diagnosed non-metastatic aggressive 'Gleason 9' shortly after I turned 63 in Feb. When I chose RP over ERBT for treatment, I was offered a clinical trial. This clinical trial throws this kitchen sink of ADT meds at my condition. Blood work is done every two weeks to monitor organ health, and PSA gets measured each month.
My last (84th) day of taking mets is this Weds. My RP is scheduled Mon. 6/4. Since PNI was observed 'right-side' in my biopsy, I may loose that nerve. I have chosen an excellent surgeon that specializes in nerve sparing, so I hope for the best outcome!
During surgery, a pathologist will collect specimens from gland and surrounding tissues (lymph nodes, etc). These will go to a cancer research facility for study on how well Apalutamide works alongside all these other ADT mets.
Like many posts I read on this forum, I too am scared. I'm scared of resulting QoL issues that can come out of RP. I am frightful of later finding a resurgence. I truly believe there will be a cure within 5 years. Unfortunately, most of us recently diagnosed can't wait. My prayers go out to all that suffer PC.
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tkalaf
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All the best and prayers for a positive outcome from the trial, and in the years ahead. As you know, many here enjoy many quality years while engaged in the battle. Here's to same for you, and all.
Wishing you the best with the outcome of the very interesting clinical trial you're on. As far as RP, I had an RP about a month ago. You need to go to a very reputable center/surgeon. QoL is an issue, but not a big issue. I still have some incontinence (much better as weeks pass), and ED is always a given for people on ADT+Zytiga, with or without RP.
I have great confidence in my surgeon, oncologist associated with the clinical trial, and their teams. My prayer is that when my surgeon views the situation during RP, that he's afforded the call to spare nerves. Thank you for the comforting thoughts.
I am currently in my third week of this study. I had RP done in 2014 with 2 years on Lupron which got my PSA to "undetectable". Then went off Lupron for over over 2 years and had PSA climb to 13.4. That made me a perfect candidate for this study. I would be very interested in how your results turn out and if the side affects are worse than just Lupron by itself. Hopefully the results are positive!
A bit confused. Are your sure it's the same trial. aka, the trail I'm on requires participant to be newly diagnosed (not had treatment, especially RP). The trial will use specimens from my RP for research. I wish you good health going forward Triplets3!
I believe you are correct. This is a 12 month study with Abireterone Acetate and Apalutamide taken 1 daily (4pills each) with 5mg Prednisone taken twice daily. Also 2 injections of Degarelix in the stomach once a month Aimed at PC that has reacurred the 2nd time. Sorry for the confusion.
I am in a study taking Abireterone, Apalutemide and 5 mg Prednisone daily with Lupron every 6 months. I am 16 months in but my PSA has risen from 0.6 to 2.3 in the last two months. No circulating tumor cells, bone Mets. Pelvic lymph nodes show no change but one deep lymph node is slightly larger than before. Since recurrence this is longest I’ve gone without PSA rise. Sorry to see this study possibly kicking me out. Looking forward to next clinical trial.
It sounds like you are doing very well! That’s great news. Please keep us all posted on the status of your clinical trial, the side ffects, and the results. Keep up the good work! You should have a good resulting quality of life, and will adjust to your new “normal.” Hopefully, all of us will be around long enough to see a cure for advanced metastatic PCa, or at least transition of the disease to a treatable chronic condition.
Understood. I whole-heartedly agree! It is tragic how this disease creeps into ones life. Many of us don't know until it has grown to far. Best of health to you!!
I “almost” got into the Apalutamide study, but my ONC’s plan never got started. Am curious on how your scans and PSA turned out (before, during and after) while on those heavy duty hormone therapy, before RP. Please post your data so we can follow it with better understanding. Thanks and praying God will help you and the doctors on your upcoming RP.
Thank you for your reply. I get my last PSA test today, prior to surgery on Monday. I will attempt to update my stats next week.
Addendum (day later)
Cmdrdata - Following are my PSA levels before, during, after 12 weeks of Apalutamide with all other mentioned ADT medicines:
Before biopsy and at start of clinical trial ADT (9.1).
Four weeks into taking clinical trial ADT (0.91).
Eight weeks into taking clinical trial ADT (0.15).
Twelve weeks and day after clinical trial ADT (0.05).
My surgery now is in 3-days. Of interest, another group at the medical center has asked for tissue samples for research purposes. They take theirs once the clinical trial has chosen theirs from removed capsule and surrounding tissues.
Rmanns, sorry to hear of your suffering. In the 3 months I had Degaralix along with the other heavy hitters, I had some very strong 'what I call' emotional melt-down. Strangely enough, what helped me was to Spotify music (even the Blues genre) while focusing on exercise. This helped me to work through the intense emotions. That is, work it out of my system. I would say, there were maybe half-dozen times during the 3-month period I experienced the worse. You just have to 'KNOW' that it's not 'you', and that it's the mets that are doing it. Rmanns, I wish you good health going forward!
I had a physical reaction to the shots like flu. I found it had a lot to do with the administration of the injection. The reaction got worse over time. I would sometimes be sick for several days after a shot.
It's been 56 days since I stopped taking a cocktail of ADT meds, and 52 days since my RP (both inclusive parts of a clinical trial).
In an earlier post above, I noted pathology results. I mentioned extra-capsular extensions were found in 3 prostate regions (unknown at time of biopsy). This pushed my Dx from 'T2d' to 'T3a'. My surgery was good, in that all margins on removed prostate and 24 lymph nodes (in pelvic region) were negative.
The report also reported just 10% of my cancer remained! (The report places a credit assumption on pre-surgical use of ADT). When discussing this with my oncologist, he shared that one participant had a RP pathology report that showed no cancer remained! In comparison, I can only know that this male was diagnosed with aggressive non-mestatic PCa (to be in this same trial).
Four weeks post-surgery, my PSA was measured at zero (<0.03). I met with my oncologist where he said from my PSA and pathology, he did not see any need for follow-up radiation. My next PSA draw is late Sept, with appts. following for urologist/surgeon and trial oncologist. The plan is to track PSA every 3 months over the next 2 years.
QoL: I'm alive and hopefully PCa free! As for other stuff, I have incontinence and ED issues. I'm told these functionalities may return (to some degree). I feel fortunate to have this outcome. My heart goes out to all others on this forum, with blessings that their outcomes come out good as well! God Bless!!
Addendum: I still have hot flashes and uncontrolled emotional side-effects. These being side-effects from ADT medicines. I am told these may last awhile.
Today I had my 3+ months post RP checkup. My PSA tested below threshold (PSA<0.03) , and side-effects from prior clinical ADT treatment are dimenishing (aka hot-flashes, etc.). My urologist requested I get my PSA tested every 3 months, for 2 years. The clinical trial will also log these results.
I feel graced by God that I'm doing this well. I sincerely pray that others on this site with this terrible disease have outcomes that do just as well! Wishing all Best of Health!!
For anyone tracking my status, here is my latest....
Just had (6 months post RP) PSA draw. My PSA tested below threshold (PSA<0.03). I am so relieved! Like many here, it is a (every 3 months) monitoring test.
ADT (hormonal) side-effects I still experience, yet less often. This has me question testosterone (T) recovery. Doctors have said it will come back naturally. However I did ingest a sizable mix of clinical-trial ADT last Spring. I am 63, and will have my annual physical next week. I plan to ask my PCP to for a 'T' level blood test.
Wishing best of health and holiday season to all! Merry Christmas!!
Hi tkalaf, I am happy for your result and thank you for sharing. My Oncologist recommended this clinical trial for me. A phase 3 study of Androgen Annihilation in High Risk Biochemical Relapsed Prostrate Cancer: NCT03009981 and I am meeting with the clinical research coordinator today. Could you please confirm if this is the same trial you did? Thank and God bless.
It involves the same meds and dosages mentioned in the 'Arm C' branch of the trial you mentioned (NCT03009981). What is different is that I took meds over 3 months Neoadjuvant (prior) to having an agreed upon radical prostatectomy (RP) surgery. During the course, I was also put on Blood Pressure medicine due to side-effects from abiraterone-acetate. I wish you best!
How are you? Hope all is well. Follow up to my treatment, I am assigned arm B of the trial. Starting the treatment today. Just to keep you informed as promised. Stay blessed!!
Hi Bab63, great to hear from you. I am doing well, thank you. Every 3 months my PSA level is checked. It has remained below test threshold (<0.03). My next test will be early March. This will be 1 year after start of clinical trial and 9 months after RP (surgery). In Dec. I requested a Testosterone test. It is back within normal levels.
In arm B you forgo taking Zytiga that arm C participants take. This will lesson the side-effects, which is good! You will have soreness 'on' the stomach from Firmagon. For me it wasn't bad and lasted few days. I see your trial medicines are taken up to a year. This is 4x longer than I took them. I look forward to your updates, and how you are making out in your trial. I wish you Best in Health in your journey!!
Hi tkalaf. Congratulations to you on getting through the trial and achieving those excellent results. I only wish I had those people at my back that you did when I was first diagnosed. My diagnosis is a little different to yours but its going to need the "kitchen sink" treatment for me to survive. I only hope I have as much grit and guts as you to get through it when things get tough. Keep posting the updates and all the best to you going forward.
Hi Richard. Thank you for your kind words! Yes, I'm through the difficult part of the trial. Going forward, the trial research-coordinator tracks PSA (every 3 months) and (if any) follow-up treatments. So far, there's no reoccurrence.
I am extremely happy with my current care-team. To note, I left the urologist I was initially referred to. I had a scheduled biopsy with him and then shortly thereafter, cancelled it. I did not feel comfortable going forward at the biopsy stage with him.
It is important you find a care-team you are comfortable with. I read many reviews and found an experienced urologist/surgeon that I could trust in my healthcare. It was also of great benefit the connections he knew, aka - cancer research center specialists in this region. It was through him I learned of the clinical-trial that I'm a participant.
Again, thank you for the kind words. I hope you get the very best in treatment.
For those following my journey, here's an update: (I am ~9 months post RP). I received my quarterly PSA result: (<0.03) ng/mL. (aka - no sign of recurrence).
My next quarterly PSA test is in June. I hope to continue on this recovery path.
This June, I also have a (1 year post surgery) checkup with my urologist (surgeon). I may also request a consult with my (clinical-trial) oncologist. It will be a good time to thank them both for all that they've done for me!
My sincerest hopes go out to all those fighting this disease. May you find healing and comfort in your journey. You are all in my prayers!
One year post RP, and my quarterly PSA has remained below threshold. Had an office visit with my surgeon where he said I'm doing great! I was surprised when I had a DRE but he informed me it was to check out healing in the region.
I can also report on incontinence, as I little leakage these days. It was almost as if a couple months back I regained control over it. I've recently stopped wearing pads. Still doing Kegels however.
Biggest issue I have is ED. I'm better to a partial degree, but still remain at ~50% stiffness. All-in-all, I feel very fortune. My urologist/surgeon and trial-oncologist both now only wish to see my PSA test every 6 mos. My prayers now go out to all others with this disease, hoping they can find their way to good health! Happy Father's Day to you all!!
For those following my progress, I am now 18+ months post RP. My recent PSA test reveals a measurement below threshold. I am instructed to continue PSA testing semi-annual now.
I have some incontinence and continue to work on erectile disfunction with hope that these both will improve. All-in-all, kudos to the health care team and the neoadjuvant trial that they placed me on. Lastly my prayers go out to all men that are fighting this disease. May God bless you all. Merry Christmas everyone.
Anyone engaged in working through this horrible disease has a remarkable story. You are most remarkable and brave. Thank you for participating in this trial...may others benefit from what you did.
Congratulations on having such a great care team, as it is very difficult to put one together.
I wish you the very best as you continue this journey and I look forward to future updates.
I read this site regularly. Yet it has been awhile since I've contributed. I'm now 4+ years from consumption of clinical-trial meds. and RP surgery. This post is an update on my life status.
Since my RP, my PSA is monitored 4 and now 2 times a year. I felt/feel so very fortunate that with each PSA draw, the report has has been below threshold. Where I receive care, below threshold means below 0.03. (They report values of measurements 0.03 and above.)
As for my QoL, I have incontinence and ED issues and of course, anxiety during each PSA draw. But I don't let any of this pull me away from living life (each day) to the fullest!
Mid-2019, I left early retirement and took on an engineering position in a medical device company. I wished to contribute back to healthcare. I have now been working on an AED (automatic external defibrillator) device for the past 3.5 years. A device that saves lives.
I wish to pass on good health wishes to all that suffer this disease. My heart is with you.
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