Hi all this is my first post. I have just entered my story in my profile. I was diagnosed and treated in 2021 and had immediate recurrence with stage 4 Olig Metastatic in 1 pelvic node and left hip. Had an excellent response to triplet therapy and was very happy with my treatment plan as I new next to nothing about this disease when I started this journey. My hormone-sensitive PCa has been in remission since 2022. I made the decision to come off ADT and 2nd gen therapy after 24 months in Oct 2023 due to side effects (primarily bone density and slightly low blood counts) and continue to monitor every 3 months. My team consists of my local MO in Atlanta and Mayo clinic (Dr. Kwon) who have agreed to take me as a patient.
I have rebounded nicely and recovered well from the hormone therapy side effects. I'm still concerned about my bone density, but my local endocrinologist is not recommended any bone medications at this time unless I have to go back on therapy. He said I might see a slight improvement with my testosterone has come back.
I'd love to hear any comments and recommendations you might have for me at this point in my journey. I don't want to miss anything that I could be doing to stay where I am. I am so impressed at the knowledge in this group, so thank you in advance!
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When I read the words "Deluxe treatment", I instantly guessed you were with Dr Kwon
I like that he tries to go for a cure rather than just treating PCa in a palliative way and is insistent on using Pet PSMA scans to catch tiny metastases early on.
Where I live, to save money, you only get approval for a Pet PSMA scan if you have an increasing PSA and are shown as negative on a CT scan and Bone scan. So you end up getting lots of scans (and radiation) before you ever get a Pet PSMA.
In a video, he had explained that in 12% of the cases, Pet PSMA scans had shown metastasis even when PSA was undetectable. Nb of metastasis: 1 (52%), 2 (25%), 3 (13%), 4 (5%), 5 or more (5%)
Dr Kwon also says that doing Regulovix + Xtandi + Doxatel can kill the cancer if done early on instead of doing Regulovix + Xtandi which just puts it to sleep until it eventually mutates and becomes resistant. He says the above should be used to kill the systemic cancer and then you add RadiationTherapy to finish localized.
Don't know if he is 100% right, but at least he gives hope that there can be cures or long remissions even without ADT and even if your cancer become castration resistant.
He explained that the stats say that when CRPC, survival is as follows depending on the approach:
1) HT only 0.9 to 1.7 years
2) HT + 2nd Gen (Xtandi) 1.5 to 4 years
And then he brought up some examples of CRPC patients who have been doing well without signs of cancer even if the treatment was about ten years ago. In the examples below, the dates in 2021 is because of when the video was made. Maybe those patients are still around and well in 2024 but I do not know.
Example 1: CRPC with common Iliac Lymph node met treated with Surgery
December 2015: PSA = 2.5 ng/ml
August 2021: PSA < 0.10 ng/ml (no trace of disease 5y + 8m later despite no additional therapy
Example 2: CRPC L2 Vertebral Met treated with SBRT
June 2012: PSA of 1.2
9 years later, June 2021, PSA < 0.10 despite no additional therapy
Example 3: CRPC Sternal Met treated with SBRT
October 2012: PSA 2.7 ng/ml
July 2021: PSA < 0.10 despite no additional therapy for the past 8 years and 9 months
I don't see what else I could add outside of saying that you are probably in good hands with him.
The EXTEND trial showed that such treatment can provide a longer vacation without treatment and without progression. I don't think it is curative and it is too early to say if there is a survival advantage.
Thanks. Yes, alas, no way to know if treatment is curative for us at this stage. After the aggressive treatment regimen I've endured, I don't want to continue if not necessary. Intermittent does not appear to be any more risky than hormone therapy for life in my case, and I'll never know if I don't take the vacation. Now I just have to cope with the test result anxiety every 3 months. Any tips for coping with that little stress event?
Exercise with heavy weights on one day and cardio the next one. Not only it helps fight off the fatigue from the hormone therapy, it also generates feel good hormones (dopamine?).
Breathing exercises using the Wim Hof method (research the guy, he is a phenomenon). It's basically a mix of yoga meditation, breathing and cold therapy.
I was always a video game player but after my diagnostic I began to focus more on Dark souls games. Many people say that those games are too difficult but it is more about figuring out how to approach a challenge. And there is that sentence from the first game which says "Don't you dare go hollow". I even considered getting a tattoo with that sentence which roughly translates to "Don't you dare get depressed and give up".
Right before bed, I try to watch some stand up comedy for 15-30 minutes as I try to clear my head of negative thoughts and worries before I fall asleep. Once my head is on my pillow, I try to find at least one thing from my day to be grateful for.
I practice mindfulness everyday. It helps me stay in the present moment. It doesn't relieve anxiety entirely, but it helps slow the mental ruminations.
I did triplet therapy when Kwon recommended it in January 2017, oft was a curative attempt, though so was the surgery and SRT! It brought 4-1/2 years off treatment, alas, no cure.
I did SBRT and 12 months Orgovyx when it came back in April last year based on a rising PSA and a PSMA Pet.
My oncologist first thought 24 months of Orgovyx combined with Xtandi and the SBRT with a curative intent.
I said I'm in the camp that says advanced OCa is not curative, rather, a potentially chronic disease that you manage and treat over time if you are fortunate enough as I am., have not become castrate resistant, no bone or organ involvement, insurance...despite clinical data indicating an aggressive PCa - GS, GG, time to BCR, PSADT and PSAV.
So, he pondered for a moment and said ok, let's do this, Orgovyx for 12 months, hold the Xtandi and use if PSA doesn't drop to undetectable in first three months (it did), then decide at 12 months whether to continue it or come off treatment based on the clinical data. The population based treatment data would say include the ARI...
At the nine month point he asked me to think about 18 months.... and discuss and decide at our 12 month consult.
I pondered the decision and when we met at 12 months said I wanted to come off treatment. He didn't have conclusive data that the extra six months would change the outcomes -OS, PFS, I didn't have conclusive data that it would result in becoming CRPC but felt that was the greater risk.
We agreed that the mitigating strategy was to actively monitor, labs and consults every three months and if, when, the clinical data indicated, go back on treatment.
My radiologist said that when the tumor boards met, the oncologists were all over the map about length of ADT and the data supporting their reasoning. She was comfortable with my decision as she knew I would actively monitor and go back on treatment based on clinical data.
Because I was on Orgovyx, the fatigue and muscle and joint stiffness subsided in the first two to three weeks, the hot flashes, they're like fat cells, they just don't go away!
After ten plus years I've long passed the prostate specific anxiety phase and just live. I'm 68, have enjoyed these just ten years, figure I have a few more so I take vacations (hit to admit, that Ring Road of Iceland was spectacular!), celebrate anniversaries, birthdays..,ride my bike, ski, go to concerts and plays..
While 30k or do men die each year of this damn cancer, the rest of us are afforded the opportunity to live with albeit with varying side effects. That us in part to advances in imaging, treatment options such as ARIs, PARP, Radio-Pharmaceuticals, PSMA PET, planning and delivery of radiation...
We are not there yet but these advances are enabling to move to individualized versus population based medicine, the "standard of care" which is often historical and given the rate of advancement through research and clinical trials, historical, well, firm a baseline from which to discuss treatment choices with your medical team.
I guess my analogy would be AIDS, once a killer of anyone, now, can be managed as a chronic disease thanx in large part to advances brought about by medical researchers.
I may yet die of this damn disease, that is unknown. It is also unknown that I die with it. My medical team knows their musssion is the latte!
Hi Kevin. Wow, thanks for the post. I know "cure" will likely be something I can never have. LT remission will come with 3 month "anxiety" checks. As you may have seen on my profile, I was diagnosed with fairly aggressive cancer that my pre-surgery bone scan indicated a possible met, but my local team quickly did a follow-up MRI that could not verify a met, so that's why I went ahead with surgery. Perhaps the wrong initial decision, but because the surgery came out with no side effects,
I'm glad it's behind me and makes it much easier to monitor via PSA. I started all this before discovering Dr. Kwon, but he know my MO here in Atlanta and shares some other patients with him. He was happy I "threw the kitchen sink" as my recurrence after surgery was immediate, so we know we did not get it all. I'm thrilled that he has taken me on as a patient as of February.
He also agreed with my decision to go triplet with chemo first rather than doublet followed by radiation. My MO had given me the choice on this as standard of care does not show advantage to chemo at the outset since my mets were few (PSMA indicated 1 probable met to left hip and 1 pelvic lymph node). My PSA dropped to undetectable after 1-2 months of treatment and has been there ever since.
My decision to come off hormone therapy was based on the fact that I had 24 months on it, side effects were troubling. Kwon was onboard with that decision (he would have recommended 18 months).
So either I got this thing (unlikely, I acknowledge) or at least I am playing offense. I wanted to do that since I started this journey at age 59 and try to stay fit (avid runner). Sounds like I'm on the same monitoring routine as you with quarterly visits alternating between my local MO and Kwon twice a year. Thanks for sharing your story and it's experiences we share that can help folks in this group. God Bless.
Im not educated enough to offer any advice but wanted to reply because I saw Kwon from 2014-2019. Gleason 9 bla bla but he set me on the path of remission that I am still on today. I had widely disseminated disease and the prognosis was bleak. He told me we would throw a nuclear bomb on a dandelion and thats what we did. Now at Mayo Phx with PSA undetectable and all lesions dormant. He is a great man.
Tell him Johnny says hi, he will know immediately.
I hear you. It's all about having a good team and making the best decisions your are able to make at the earliest possible moments. Being younger allows you to get after it!
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