I am 68 years old. I have been stage 4 PC for almost 7 years now. My doctor is an out of the box thinker and I love him.
After my stage 4 diagnosis with 3 mets (ribs, ribs, pelvis) I did the triplet therapy (adt/zytega/chemo) even tho the triplet therapy hadn’t yet been proven to extend survival and I did SBRT to my three mets. . After 30 months (12 at .02 PSA) I did my first “vacation”. Keep in mind that I originally did chryo to the half my prostate that had disease so my “normal” PSA is probably about 2.5 for my remaining healthy prostate. After 19 months of vacation, my PSA went from .02 up to 5.32 at which time we found one met on L-5 from a PSMA scan.
I hit it the one met with SBRT and went back on both Lupron and Zytega. But I wanted to do something extra this time. I looked into Provenge. Since I was still castrate sensitive, insurance would not pay. I spent a lot of time with my MO looking at the the detail of the Provenge trial results, specifically the break down by tranches of PSA. As it turns out, the lower the starting PSA at the time of treatment, the larger the increase in median survival. For example, the entire trial only showed a 4 month survival advantage. However, in the lowest tranche of starting PSA , the median survival increase was 14 months. Keep in mind that even that lowest PSA group had a relatively high PSA at the time of treatment. I think it was something in excess of 10. So I thought with my PSA at about 5, and still being hormone sensitive, it might work really well for me. You may ask why the company never did a trial for hormone sensitive men? I was told that hormone sensitive men were expected to live too long so proving an increase in survival (the gold standard for trials) would take too long and be too expensive and they didn’t know if it would lower PSA. . Anyway I bit the bullet and paid $160,000 out of pocket to give it a try. Stupid expensive for sure but you can’t take it with you and my family gave their blessing. My PSA quickly went back to .03 (likely from the ADT/Zytega and SBRT again) and I began vacation # 2 after a year of treatment plus Provenge.
Fast forward 27 months into vacation # 2. Shockingly, this time my PSA peaked at 2.71 7 months ago and my most recent last two PSA readings were 2.3 and 2.29. That is down over 15% in the last 7 months. Remember on vacation # 1 my PSA kept going up all the way to 5.32 after only 19 months. And my scans have all been clear
Now my T Hasn’t recovered much (only 60-but I feel great) but It stayed low on vacation # 1 too. The only real difference between vacation # 1 and # 2 is adding Provenge. Provenge was only shown to increase survival with little impact on PSA but that was for castrate resistant men. I would like to think that my far better results on vacation # 2 vs #1 are related to the Provenge. Wishful thinking perhaps but 5.32 after 19 months vs 2.3 after 25 months?
By the way I lift weights religiously 3 times a week for an hour . That has to help too….
Schwah
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Schwah
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I'm assuming you paid the 160k from retirement funds, hence the family blessing. I'll be 59.5 this time next year and may add provenge early as well. At the moment I'm on Orgovyx and Xtandi and doing well. Your post is encouraging though.
Thanks for sharing your experience and your thoughts throughout the process. I am hopeful that your journey of going against common practices gives you the results with an extension of treatment free survival and overall survival.
Well I had three mets before vacation # 1. Two on my ribs and one on my pelvis and did SBRT to those three mets before vacation # 1 the same way I did SBRT to my single met before vacation # 2. So the only real difference between vacation # 1 and # 2 was I had chemo before vacation # 1 and not before vacation-# 2 and I had Provenge before vacation # 2 and not before vacation # 1. And vacation # 1 ended in 19 months with a met to L-5 and 5.32 and rising PSA and vacation # 2 still going strong at 27 months with a PSA of 2.3 down from 2.7 seven months ago and clean scans. It would seem to me that all things being equal, vacation # 2 should have gone worse then vacation # 1….not far better. Provenge seems like as good a reason as any right?
What was your self funded path and how has that gone?
Thanks Schwah, I appreciate the exchange! I am fascinated and interested in your efforts. A friend of mine looked into Lutetium-177 before ADT/chemo but was declined because they could not establish his cancer was PSMA avid.
Answering your question, after my unsuccessful salvage RT to prostate bed I chose salvage extended pelvic lymph node surgery over salvage RT to the pelvic region and/or STAMEPEDE protocol. I made this decision after imaging in Europe identified five suspicious pelvic lymph nodes whilst the Ga 68 PSMA PET was 'clear'. Six cancerous pelvic mets were confirmed by the ePLND. I then did one year only on bicalutamide for 'added insurance'. That was over six years ago and holding <0.03X last three years; no further ADT.
It is interesting that you were thinking V 2 might have 'gone worse'. Perhaps the combined zapping of your four known mets played a bigger role? This remains my thinking for the surgical removal of my known pelvic mets. I understand debulking should not be seen as definitively curative, but I am counting on significant oncological benefit from removing/killing all known mets, especially when done earlier than later. Yes, this falls on the capability of imaging - I am so very fortunate to have found my way to the Ferrotran nanoparticle MRI and hope for all of us its availability improves.
Separate questions, in your bio you mention you clear circulating tumor test. Which one are you using and how often? I have done the GUARDANT360 liquid blood biopsy twice.
an expensive experiment. For anyone contemplating using it, the survival graph for metastatic hormone un-sensitive cancer is not very encouraging if one is looking to it as a way to wipe out the cancer cells. In the sense that after sufficient time passed (4 years) the same number of people did not make it
True. But like I said in my original post, a breakdown by starting PSA showed results that were 350% better in the lowest tranche of starting psa vs the highest (median 4 months vs median 14 months increase in survival). And that’s with castrate resistant men with relatively high PSAs and advanced disease even in the lowest tranche.
Virtually every successful cancer treatment performs far better the earlier it is started. That’s why the triplet therapy at the start was so superior to the old way of using treatments sequentially until failure. Why wouldn’t Provenge be the same?
Of course. But with my PSA stable with no ongoing treatment for two years, I don’t really want to rock the boat. BAT seems like more of a hail mary to me given the downside risks.
You are looking at overall survival not Prostate Cancer Specific Survival. In this older age group, one would expect over time for the 2 curves to converge and then there is K-M censoring.
given the focus on results on prostate cancer specific survival delay it did not seem to move anyone to the “cured” column. So there isnt any evidence it helps the body evict the cancer cells down to a population of zero. Is my point.
These are all comers with mCRPC starting with average high PSA. Even with these the curve ends at 15%. And then there are those who died from causes other than prostate cancer. It is not possible to tell how many were "cured" or not. You are correct, though, there is no evidence that anyone was cured, but there is no evidence that some were not.
Nice to hear a good outcome. Starting Provenge treatment tomorrow. Over by 9/23, except for a clinical trial where I might get a 4th dose 20 weeks after regular treatment.
I have been declared metastatic, but I must be close to borderline. My first PSMA scan in July showed no Mets (contradicting 6 years of earlier scans), and my PSA on 8/29 showed a drop to 1.61 from a high of 1.92 in June. Having it checked again today.
I had to hunt down a provider in Daytona Beach by contacting the company. Have to go to far side of Orlando (90 miles one way) to have the blood draw, but the company provides free transportation.
In 3 weeks we'll start assessing the aftermath. I've only had Lupron since diagnosis in 2018, no other treatment (except quarterly denosumab shot).
Your analysis on Provenge for HSPC is correct. The only reason it is not approved for that is the lack of a clinical trial. It seems to work better earlier as you pointed out. The out of pocket cost for you seems criminal but I commend you for stepping up for it. And its efficacy does not always reflect in PSA response.
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