I am new to this forum and, of course, had a couple questions. I turned 50 years old in April. I was diagnosed with advanced PC in March of this year. My PSA level was at 400 and after a biopsy, by Gleason score was 8. It has spread to my spine, pelvis and hip. I just had my first ADT injection(s) last week and starting on Zytiga later this week. Physically, my body responded really well to the ADT injection. Any advise on the treatment I'm getting or anybody here with a similar diagnosis?
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Dx 9/20, prostatectomy 12/20, Post Surgery lowest PSA was 1.1 in January. Then went up to 2.5 in March & 3.65 in April. No visible mets on April scans. Finally started Zytiga mid April & first Lupron shot 1st week of May (was fighting with insurance about Orgorvyx).
If there was lymph node involvement, he should have salvage radiation - no question about that. You know for sure that something is there. Lymph is a fluid, transporting cancer cells around the entire pelvic drainage area. If cancer was in 1 lymph node, it is undoubtedly in many more.
Please talk to a different radiation oncologist while this is still potentially curable. There are new guidelines about the area to treat:
Using the prostate cancer nomogram tool from Sloan-Kettering, the probability for salvage radiation successfully treating recurrence for my husband is 1%. This is based on pre op PSA, Gleason patterns & score, how fast his PSA doubled after prostatectomy, etc. I’m glad our dr isn’t giving treatment that statistically will do no good and could cause harm to surrounding structures & tissues.
Hello, There are many of us who can relate to your circumstances. I was diagnosed in 2013 with advanced prostate cancer. My PSA at the time was a little below 1700 with extensive bone metastases from the neck to the knees. Fortunately, no soft tissue involvement. Like you a Gleason score of 8 (4+4). I was 57. After two weeks on Casodex (bi-calutamide), I was placed on Zoladex (goserelin acetate). Except for one year on Firmagon (degarelix), I have been on Zoladex ever since. I also take a maintenance dose of Prolia (denosumab) for bone strength and to avoid a skeletal related event (SRE). Three and three quarter years ago my oncologist added Xtandi (enzalutamide) to the mix. I am now one week short of passing the eight year marker. Not bad for a person who thought he had eight months to live. Four pieces of advice: One, get informed, Two, stay positive, Three get an oncologist who knows what he is talking about, Four involve your wife every step of the way. Good luck!
Somewhat comparable to me. 1.5 years ago I was diagnosed (age 45) with PCa, psa 88, gleason 7 (4+3) in all 12 biopsies, mets to several lymphs, several bones, rib etc (via PSMA pet/CT scan). I got on ADT right away (Eligard) and a month later Zytiga1000mg/5mg prednisone. After 3 months I also got radiation to my prostate due to possible benefits of avoiding the prostate to control mets in the body. I also got my mets zapped (which as TallAllen says has no proven evidence - but what's to loose...)...The treatment with initial ADT+Zytiga (cf. LATTITUDE study) is quite good.. BUT.. as TallAllen also just posted, adding docetaxel (chemo) along with it have indications of improving your prognosis significantly. If I could go back in time, I wish I have had that possibility. Many things go in the direction of hitting HARD and EARLY.. and the hitting it hard ting.. Things tend to go in the direction of doing more things at the same time early to hit the cancer with many weapons early and knock it out effectively.. then more cancer it kicked out fast and it takes much longer time for the remaining surviving cancer to "recover".
Also, at your age with this aggressive cancer, there is a possibility that it is all due to a gene mutation. I have BRCA2-mutation myself (which is most likely the reason that I got this aggressive PCa at this young age), and if you also have such mutation, there could be a way of using PARP-inhibitors along the road (or get in the AMPLITUDE phase3 study NOW - but that has to be fast, because you are not allowed to have had Zytiga for more than a month or so as far as I remember)...
Well, sound a little bit as we are in the same darn boat.. Hope you can get inspired of my experiences.. But not sure it is possible for you to get all those treatments as they are not all approved yet.. Just my opinions.. You must also feel what you think is best for you since you cannot follow all well-minded advices
My husband’s timeline is very similar to yours, but he is 67.
He has had his PSA checked annually and it has always been around 2. February 24 of this year, he had a little blood in his urine and his PSA was 11.7. It took a bit of time to be seen at Mayo, then get the MRI fusion biopsy. We received those biopsy results on March 30, bone scan on 4/1, met with urologist on 4/8. He was referred to the doctor who manages all their advanced metastatic cancer, who we met on 4/15. He also had a consult with U of Chicago who suggested the same treatment plan. My husband’s bony metastasis is from his skull to his femurs as well.
He had a port placed on 4/19 and started chemo with docetaxel and ADT with degarelix on 4/21. That day, prior to his first treatment, his PSA was 72.8. That was 8 weeks to the day after the 11.7.
I have already emailed his team re: the PEACE-1 preliminary study results that Tall Allen posted here.
We has had the germline studies done but they didn’t show anything that would indicate a targeted therapy.
So, like you, we are still reeling from this diagnosis. My husband is very active and otherwise healthy. He has had 2 doses of chemo and is tolerating it well. He golfed 18 holes last Sunday, and is working hard to maintain his muscle mass on ADT.
We have found that it gave us great peace of mind to go to the best team of doctors we could find, get second opinions, and read everything we can. This site is very helpful.
Sorry to hear you joined this group, but I hope the best for you. One of our brothers who just died left some great advice for all of us, and if you haven't read it yet, please do so.
I think you'd should try and add docetaxel (chemo) to your regiment, like Tall Allen's post. That could be your game changer, and that news just came out.
I am 63 and was diagnosed in May 2020 with stage 4 with extensive mets in my skeleton. My oncologist immediately started me on 6 rounds of Docetaxel with simultaneous monthly Firmagon injections. At diagnosis my PSA was 984. Now ithas leveled out at 0.3. My last bone scan showed a reduction in mets. Best of luck with your treatments.
I'm another member of the early stage4 club, diagnosed at age 55. I started Zytiga after I became castrate-resistant, and along with my other layers of treatment have gotten pretty good results. The only thing I can add to the advice already given is to recommend that you establish and rigorously maintain an exercise routine. Don't wait on that. It is the only way to fight against the muscle loss, fat gain, and overall fatigue that ADT eventually causes.
Thank you for the advise. About a year ago I'd jog for about 3 miles 5 days a week then just became very fatigued and lost interest. I just started running again two days ago and managed to complete 1 half mile each day. I will continue to do that moving forward.
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I am 50 years old from Texas. In March of this year I went to an emergency clinic for a whole other reason. There, a CT scan revealed I had an enlarged prostate. I had no idea as I didn't have any symptoms. My PSA then was 216. I was referred to a urologist and after a biopsy (Gleason 8) last month, it was confirmed I had advanced PC. I am being treated at MD Anderson in Houston. I am now on ADT, Zytiga and prednisone.
Sure glad I found this site. A lot of information from others that are going through the same thing. Everyone here is very kind and have made me feel welcomed.
Oh, yeah.. the Z is silver. I lost interest in it when I was diagnosed. Since I found this site, I realized its the wrong way to go about it. I will take the advise I found here to heart and remain positive about this.
Thank you for your quick and detailed reply. You have many many years ahead of you to spend with your wife and your daughters. Life does not end because you've been diagnosed with Pca. Think of it this way, it's God's awakening call to enjoy the rest of your life. So get in that silver rocket and drive the neighbors crazy... Vroom Vroom....Stick with us on this site for great information and camaraderie. Keep on vrooming............
I am being treated at MD Anderson in Houston, TX. My oncologist has me on ADT, Zytiga and prednisone. He gave me no word on doxetaxal. I will talk to him about it on my next visit. Thanks for the heads up on that one. Good luck to you brother.
Wow. Your journey begins. I am 67 and only7 months ahead of you. There are some brilliant minds on this site. So much good advice it will make your head spin. My learning curve is vertical since Dx. There is NO one size fits all. Every Man presents differently. Choose the best Western Medicine you can. I keep my local URO as part of my Team but have travelled long distance for specific treatment. My appreciation for life has never been more acute. My wife and I are showing kindness and compassion at a new level. Our 34 yr old daughter and 31 year old son, look at me with different eyes. As mentioned above +:Be positive
Stay active
Light weights, high reps ( you will be weaker) helps
Choose good Western Medicine Practitioners
Find an Onco that only does PCa
Use Eastern Medicine techniques
Eat Healthier, organic, farmers market foods
Dont be afraid of supplements or minerals or vitamins
Drink a ton of water (cancer thrives in acidic enviro)
Surround yourself with loving family & friends
Meditate/Send out blessings
Have a strong reason(s) to live (write/share a bucket list)
Believe in the power of the mind to heal. It is a powerful tool and we only use about 10% of its power. Proof: placebo effect on known curative drug trials.
You're a Brother now. Show respect on this site.
I believe a cure, or extended remission is very close now, we just have to keep ourselves healthy until that moment. What a PARTY that will be!🥳
Finally, keep the rear wheels from spinning on that Z06😎
Thanks for the advise. You seem to have a very good positive attitude towards this. I am working hard to be there myself. My wife and I have also been closer than we have in years. So thankful for her and my two beautiful daughters, 17 and 25 years old. I have a lot to live for and I will draw strength from them. I am being treated at MD Anderson in Houston, TX. My Onco has me on ADT, Zytiga and prednisone; however, he has not mentioned anything about doxetaxal, but I will bring it up to him on my next visit. As far as the Z06, I haven't driven it since my diagnosis. It hit me like a ton of bricks and it didn't matter at the time. I will drive it today though and keep a positive attitude moving forward, just like you. Thanks again my good friend. Your words really hepled. Best of luck to you and your loved ones.
I was at MD Anderson, Houston for the SWOG 1802 phase III (final) trial. Dr Anna Aparicio-Oncologist, Dr Karen Hoffman- Radioligist, Dr Brian Chapin-Surgeon (over 1500+ Robotic RPs). Good team. Unfortunately, my PSA & T were up and down and rose 2x. The trial has 2 strict rules. 2 or more rises in PSA, you are out, and must reach close to undetectable within 28 weeks of starting ADT. I hit 28 weeks with a PSA rise from 4.2 up to 5.4🤬. Im out🤔. Since that visit in April I posted a 3.3, then last week my low Nadir of 2.26 PSA- my lowest in 7 months😎. I started at PSA 47 late October. Im on firmagon inject mthly, zytiga + prednisone, finesteride, tamsulosin, 81 mg st joseph baby aspirin, mostly plant based diet, pomi-T (brocc, pomegranite, tumeric, green T), zinc, vit B-12, D-3. I have read on this site that men who take longer to reach undetectable may live longer? Cannot find research to prove it. I do believe, like Dr Kwon at Mayo that we only get 3 or 4 low Nadirs where PCa cells are in slumber/sennescence, and these are opportunities to throw everything plus the kitchen sink at the enemy. Hit em hard, very hard at 3am while they are asleep. Press on regardless. I do believe cure, or extended remission are close at hand. We have utilize all of this latest and greatest technology in unison…..”AND EARLIER THE BETTER”. Best of luck Brother. With enough synergy, we can get this done!Mike K
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