I haven't posted too often but read all of your posts. I appreciate hearing about all of your experiences and take comfort that I am not alone.
I want to share an update of where I am in this journey. I am hoping someone will relate and/or gain some benefit from my story. Also hoping others may have advise or comments about my situation. And lastly, I find writing about it cathartic.
I was formally diagnosed on January 28th, 2020 at the age of 54. Over the previous 3 weeks I had PSA readings of 433 followed by 579. (BTW, I had been seeing my family doc and a urologist for a year with urinary difficulty and neither did a PSA or DRE…another story).
I now had a new urologist and an oncologist. After the CT scan, bone scan, biopsy and cystoscopy, the extent of my cancer was understood, metastatic cancer, Gleason score of 9 with mets to multiple lymph nodes and 3 small bone mets.
My urologist promoted a healthy lifestyle, so since meeting him, I've been a pescatarian, with pomegranate juice, Omega 3 and vitamin D every day. Not going to lie, I will try a bite of steak every now and then and if I feel I really deserve a cheat day…eggs benedict! I also try to stay active. Riding my Peloton, yard work, golf, etc.
I was put on Firmagon immediately and 6 weeks later started a 6 dose cycle of Docetaxel every 3 weeks. The Firmagon side effects have been minimal (minor hot flashes) but the cumulative effect of the chemo was pretty bad by the end. I kept working the entire time but had a few afternoon naps to get through it. The worst were the aches in my hips and legs. This continues to this day so I suspect the Firmagon is also responsible.
At the advice of my urologist, I talked to my oncologist about radiation. As most of you are aware, radiation has not been given to metastatic prostate cancer patients historically. However, there was evidence of some benefit so we went ahead. 6 weekly high dose radiation treatments in a new machine called an MR-Linac (MRI Linear Accelerator). Side effects were minimal, difficulty peeing.
The last change I've made, I introduced intermittent fasting a few months ago. It wasn't difficult as I wasn't having much of a breakfast anyway. If nothing else, it has helped me drop a few unwanted pounds.
So here I am, 1.5 years later:
• My PSA dropped to under 100 immediately with the Firmagon
• Dropped to 16 at the end of chemo (July)
• Dropped to 8.5 after radiation (December)
• After chemo and radiation, scans showed some areas of cancer had decreased and others were the same
• March PSA was 10
• June (now) PSA is 5.9 and scans show no change
I realize the numbers will start going in the other direction at some point in the future, I just hope it is much further in the future. Also, my wife and children (24 and 25) have been incredible. And in the odd moment I feel sorry for myself, they help me focus on the now an stay positive…I could not have battled this hard without them. I see how many of you have supportive families and we are lucky. They are fighting for us just as hard, in some ways it’s harder on them (could be another deep discussion on its own).
I wish all of you Warriors the best in your fight against this awful disease…peace and love!
Greg
Written by
GTTown
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Welcome to the club no one wants to join. Sounds like a good start stay aggressive. The folks on this site for the most part are very knowledgeable and well read. I am sure they will have some other ideas and can set you in the right direction for trials, hospitals, and doctors. My advice is always the same- know your self and stay positive, be your own advocate, learn about treatments and side effects, challenge your doctors. YOU are going to work the hardest to keep yourself alive and healthy. The longer you live the more treatment opions you will have. Good luck and welcome!
Sounds like you have a good set of doctors. .That's critical. My situation is somewhat similar to yours...Dx May 2019 G8/G9 at the age of 53. All in the right side of prostate. PSA was 12.3 in Feb. 2019. Clean bone/CT scans..RP on June 2019...post RP pathology was G9 pT3bN1M0. 1 of 12 nodes positive.Lucky me..started ADT in July 2019 and IMRT on Oct 2019. Added Zytiga in Nov 2019. PSA is <0.01 and I'm due to come off ADT starting on July 14th.
Diet and exercise is key to living a decent life while on ADT. Good to hear your still working. Some can't due to side effects.
Thats what I was wondering. My MO gave me last 3 month shot of Lupron and I will take Zytiga until next 3 month meeting 9/16. It's actually a month short of 2 years because they kept scheduling my appts a week short of 3 months. I was thinking the last shot was a milestone but realized the milestone will be is September. No complaints here just hope it all remains the same as it is now when it gets here.
I think I started ADT earlier that you. This shot will actual make it 27 months of adt after the 3 months is up in Oct...I started Casodex at the same time and continued until Nov 2019 when I switched to zytiga...in the end it's the PSA that matters and not the medication...or no?
Your right, if I stop it will have been 23 months since the start of ADT for me. Sure seems to be all about the PSA for now. No mention of scans or anything for me. Then again if my blood work looks as good then as it did a couple weeks ago I'll feel.more confident about stopping. My RT did mention based on my original PSA that it could come roaring back slwhen I stop so one day at a time.
Gleaning the info from the recent post on the recently approved scans...no sense getting a scan until PSA reaches 1...even these newer scans start at .5...we are far from that...My MO wanted to do 6 mo PSA test after this last shot but I told him I wasn't comfortable with that and I wanted to stick to 3 mo....I think I'm going to insist on the ultra sensitive....I want to pick up a rise asap...still may hold off on treatment and get a scan so I can choose the best treatment for the re-occurrence.
My thinking as well on the 3 month but my MO never brought up 6 months. I agree on the scan except for that rare occurrence of progression w/o a rise is PSA. Never had uPSA test so probably no need to start now though I did wonder what my true nadir was.
You are graduating (great news!) and j-o-h-n is on the bench. I think my doctor is annoyed that I am still here. I screwed up that prognosis. 55 years and now I'm sure you will enjoy life to the fullest. And sounds like going to town is going to town. Looks like our side is winning.
Hello, I have something similar. I am 54 years old and have two sons aged 25 and 26. In September 2020, I was diagnosed with prostate cancer. On December 8, I underwent robotic surgery. In January 2021, 6 weeks after surgery my PSA was 1.18. I went for a scan and was diagnosed with three lymph node metastases. I irradiated two with SBRT, and now I irradiate the entire pelvis. I had 3 out of 25 lymph nodes affected. Gleason 7 (4 + 3).My PSA was before surgery 10.7. Now before the radiation the mine dropped to 0.01. I underwent Resiglo hormone therapy. pathological finding. pt3bN1MX. I hope for the best.Adam
I have had a similar history original doctor and urologist slow to detect prostate cancer cystoscopy, Gleason 9, Firmagon, radiation and so on. Good luck and I am pleased to note that you have good supporting family.
Onco says I’m definitely a high risk at 61 years old. Just stopped Eligard (Lupron) after 18 months. PSA and testosterone both undetectable. DX June 2019. G7 (4+3) all 12 cores 100% (adenocarcinoma) My initial PSA was 34. LiNac machine radiation completed last August. Negative for mets, lymph nodes clear. Hoping this break from ADT is not another of my huge mistakes. Wishing only the very best for everyone.
Welcome GTTown. You were “de novo metastatic” at diagnosis last year and have had well considered and aggressive treatment. Good for you and also for the lifestyle enhancements.A recent clinical trial shower a rather remarkably more effective combination for de novo metastatic PC in the PEACE-1 trial. It includes ADT, abiraterone with prednisone and adding up front docetaxel. Since you are on Firmagon ADT and have had the docetaxel already, it makes me wonder if adding the abiraterone now would be of benefit for you. I think this deserves a serious conversation with your MO. Here is a link to Tall-Allen’s excellent analysis of PEACE-1 :
Another awesome success!!!!Great response to your meds/treatments. The next PSAs will indicate a path, hopefully you reach a nadir as low as possible. A low nadir ( Under like 0.4) and TTN
So, the longer it takes and the lower it goes has a more favorable prognosis.
In my case went from 840.2 in 01/2015 to 0.1 in the Summer of 2017. Had 15 Taxotere sessions (MO allowed me 9 more than protocol) in 2015 with ADT having started a few weeks earlier per the CHAARTED research. Declined radiation
Unfortunately, Abiraterone and then Xtandi failed thru 2020 - rechallenged with Taxoteres beginning on New Year's Eve day. Latest Axumin scan showed two high activity spot in pelvic lymph nodes resolved and the PSA was at a 3 year low - 2.2 (tho it should be nearer to Zero with T at 16)
I can relate I was 53 upon dx . That was over six years ago for me . You’ve been busy . You’ve done much . Our family’s future is the priority . Hang n there .
Thanks for sharing Greg,Man it is hard for some of us to get to undetectable. Im slowly coming down after 8 months (from 47 to 2.2 w prostate untouched despite my aggressive efforts).
Yes, the topic of what our wives (partners), children, and to some extent even our friends are going through is an entirely different subject that could go on for eternity. My wife says when I go, she wants to go with me. Says that life will be too difficult, and no longer fun, so she believes we should go together. Makes me sad.
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Ruminating on Extending ADT&Zytiga beyond 18 months
18 vs 24 months of ADT + Zytiga after locally advanced PCa? 
Zytiga after nearly four months
PSA after 4-5 months on Lupron (Scholz)?
After 21 months of feeling good, fatigue now?
