11 Years Ago, On My 54th Birthday, Following a Digital Exam That Detected an Enlarged Prostate, I received My PSA Results Whichh Measured in the Mid-30s. Follow Up Scans Confirmed Suspicions That I Indeed Had metPC. On June 22nd (my wedding anniversary) I received my first hormone deprivation injection. Following prostate surgery in the Fall, I am still kicking (and playing some sports- Pickleball being my latest obsession) which I Am Very Appreciative Of. I hope to "keep on truckin" for a while and wish the same for all of you.
FYI- Lupon and Aberaretone Seemed to Start Failing About 18 months Ago. About 11 Months Ago, I Had My Largest Tumor, Located in My Left Acetabulum Radiated and PSA Went Back Down to Immeasurable. PSA became Measurable Once Again (at .05) about 2 Months Ago and Rose Slightly to .06 a Month Later. I Am Following MO's Advice and Sticking With the Lupron and "Abi" To See If PSA Continues To Rise and Then Have Scans When PSA Indicates They Might Be of Some Value. Not Sure What The Next Step Will Be If PSA Continues Trending Upwardly and If Scans Confirm Changes To Tumors.... Could Try "DEX", Apalutimide, Radiation, other Drugs....Any Knowledgeable Science based Thoughts and Suggestions Are Appreciated. Hoping For The Best For All of Us!
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Have your bone density scanned (DEXA or better). It wasn't clear from your post if you have been on Lupron and Abiraterone for 11 continuous years. They both cause your body to suck calcium from bones, leading to osteopenia/osteoporosis. You also did not mention if you recently had a PSMA PET/CT scan or 2. As for RT of recurrent mets, its called MDT for metastasis-directed therapy which I have heard good things about. I am not a doctor, don't even play one on TV.
FYI- I took 3 vacations during the first 5 years of my treatment, each one shorter than the next and the longest one being about 17 months between injections. My calcium levels are checked regularly and although I was osteopenic at one time, that was for a short period and I returned to normal quickly thereafter. The scan I had preceding my radiation in June of last year was a PSMA. I am treated at MSKCC in NYC and along with the numerous other studies they perform, they were leaders in the study of abiraterone, which I started taking earlier than most and I believe they are also doing/have done studies on the MDT which I had and you referred to.
Did you do anything to increase your calcium level? After 14 months of Ellegard, Abiraterone and Prednisone my recent DEXA scan showed some bone density loss in my hips. Per doctor's recommendation I have increased weight bearing exercise specific to my hips. My Dr. didn't recommend this, but I have increased calcium intake (was already supplementing) and added magnesium and vitamin K2 to my regimen. I was already taking vitamin D supplements.
The Pickleball you are playing is my latest passion (addiction😂) too. I’m 6 days per week. 3-4 hours per day. Because this is an impact sport, we should do good with osteopenia and ostepoorosis. Swimmers and Cyclists (no jokes about crashes) are more susceptible with lack of impact like running. The cardio should keep our cells (and the Mitochondria within) well oxygenated. You are fighting a well earned, well researched battle. Radiation (SABR) also helped bring me to new low PSA Nadirs. All my best to you and yours, Mike
Your post was a very positive one and made me feel that there is always 'light' at the end of this tunnel we all travel down...good that things seem positive!
Here is a great podcast that I think can help just about anyone. I like the format as there are 3 case studies that are revealed to a panel of top URO's, who prescribe and then find out what happened to the patient! Its a great way to learn from others experiences plus the URO's provide a great deal of information, some of which I have never heard. See if you can plug yourself into one of these case studies, or learn from aspects of each. Good luck. Rick
Congratulations! Here are some thoughts as "knowledgeable and science-based" as I can make them through direct experience:
I stuck with "Abi + Pred" until about PSA ~2 (nadir of 0.2 years ago, floating above 1 for a few years now), then "Abi + Dex" until PSA rise to ~4 last autumn... I got almost 4 years on Abi all told.
For you and me, with Abi out, the "old," "simple" Standard of Care (SOC) would have been to rechallenge with chemo (or up the chemo impact with stronger chemo or chemo combinations) and then on to Xtandi. However, the paradigms are shifting and institutions are getting more flexible/creative in their care.
Genomic testing (biopsy-based testing versus the inherited DNA genetic testing) is improving and becoming more widely utilized. Existing treatments for other cancers have been incorporated in PCa treatment, e.g., Oliparib (an ovarian cancer/BRCA mutation treatment approved for PCa in 2020 by FDA). In August 2022, the FDA approved darolutamide (Nubeqa) as an additional androgen receptor inhibitor.
Importantly for my experience, PSMA scans and PSMA Lu177 treatment (approved in U.S. March 2022) is moving into SOC. As Abi failed for me, my oncology team at OSU James wanted to go to Pluvicto, so I was all in. Next week I'm having my last of 6 Pluvicto treatments and have gotten some good (not great) success - PSA down to 1.4.
So... you have numerous treatment possibilities awaiting you, and more likely on the way.
Perhaps a trial, such as BiTE, would be of interest to you since you are in pretty good health and not up against treatment decisions just yet.
11 years is a good sign that you'll be around for at least the 31st year to celebrate another milestone. My M.O. at MSK just switched me over from Lupron and Casodex to Lupron and Nubeq/a ("/" = missing u). I will be getting my first psa results in the middle of June. So far no side effects from the Nubeq/a ("/" = missing u). Maybe you should mention my path to your M.O. (My M.O. is Dr. Michael Morris at MSK).....
Actually "I think" because I reached a point where Casodex was not helping and he figured what the hell j-o-h-n is a pain in the ass so why not get rid of him once and for all..... Nubeq/a was voted as "the favorite pill of the month" and if it works I'll let you know.
Yes Dr. Morris is my man...... he hates me and I hate him.....
Where are you guys located in the NYC area..... I'm in Forest Hills Queens....
Ahhh you mean Liberalville........ Thanks, who knows one day we might bump into each other in the Kimmel center. You can't miss me.... I'm the handsome guy.....
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