Brief synopsis of the latest on me. I had a partial cryo-procedure about eight years ago. With 60% of a remaining prostate, my PSA remained stable at about four for approximately five years. When PSA started going up, I did an MRI on my prostate and they found nothing. So about three years ago I did a C 11 Acetate test in Phoenix and they found three small mets. Two on my pelvis and one on the ribs. My oncologist, Dr. Scholz, wanted to hit it hard an early so I did four sessions of chemo, Zytiga, Lupron, SBRT radiation on the three mets, metformin, simivastin and for good measure I added Zometa and Celebrex (which together was proven to reduce deaths by over 20%). I also lost weight , worked out hard with weights and ate healthier albeit not perfect. I stopped all meds except the metformin, zometa and celebrex for a “vacation” about a year ago with a PSA of .02 that had been consistent for about six months. I did a PSMA test at that time to have a baseline for future imaging because with 60% of a prostate my psa would go up with or without PC progression and I needed a way to know when to end the “vacation”. My PSA over the last year since my vacation began has increased from .02 to the most recent 1.7. I did another PSMA test yesterday at ucla (ughh another $2700) and just got the results. 100% no change from a year ago and no sign of any lesions. 😁. So the plan is to continue with the metformin, zometa and Celebrex only and do another psma test in 3-6 months depending upon my psa progression. I’m hoping it peaks soon at 3ish and stays there. One question. does anyone think I should also do imaging for non psma avid cancer cells with FDG and or Axumin? Radiolgist at ucla says highly unlikely at my stage to have non psma avid cells. But I’m not so sure.
Finally I’m reluctant to post my good news here because so many others are not faring as well and that breaks my heart . But I wanted to make the point to hit it hard and early as my MO did. I see a lot of people here considering waiting and thinking waiting will reduce the time to castrate resistance. I do not believe that to be the case and most of the big recent studies are proof of that.
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Schwah
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I live in Southern California so ucla is closer than Phoenix. I only went to Phoenix last time because I wasn’t eligible the psma scan at that time and the c-11 acetate in Phienix was the next next best option out there at that time.
Tall Allan thought the imaging that Stanford is doing is the best. It’s psma based but somehow different. My MO agreed that it was a little better. But I did not fit their protocol to get into their program. Perhaps you can. The drs at ucla of course say theirs is as good as any. The only thing everyone in the know seems to agree upon is that psma imaging is the best imaging out there today and will soon be FDA approved and thus paid by insurance.
"does anyone think I should also do imaging for non psma avid cancer cells with FDG and or Axumin? Radiolgist at ucla says highly unlikely at my stage to have non psma avid cells."
I have had this same issue.
I came down reluctantly as follows:
1. If you don't have fast rising PSA, then it can only be small cell prostate cancer.
2. If it is small cell cancer it will very quickly make itself known without a scan. And you are screwed in any case.
3. The fewer things you unnecessarily expose your body to, including contrast agents, the less likely you will run into unintended negative effects from whatever you are doing.
I don't know about FDG, but all the other scans are most accurate with a PSA of at least 2.0. If you take a scan with a PSA under 2.0, you increase the possibility of a false negative. There is unlikely to be any great benefit to taking it before your PSA hits 2.0. Seems like there is no good reason to rush a scan without at least of PSA of 2.0 or greater... even to establish a baseline (perhaps especially for purposes of doing an accurate baseline).
Seems like generally you are doing all the right things in my personal opinion.
The psma scan is supposed to find lesions at an 80% rate between 1 and 2 psa so anything over 1 may be a good time to get the scan . I just spoke to dr Czernin the head radiolgist at ucla administering the psma scan program. He says the pet scan portion of the psma scan should show any lesions as well as an Axumin scan so he said no need if I show nothing on the psma scans.
My point exactly. So far virtually every study that added another mode of treatment early to adt, has proven far more effective than the adt alone. Which is why I urge those who think waiting will prolong their time to castrate resistance, to think again. The science seems to clearly say the opposite. Throwing in chemo with the Zytega and Lupron and SBRT was going even a step further. But logic dictated that if A plus B is better than A or B alone and B plus C is better than B or C alone than wouldn’t A plus B plus C be even better? Throw in D (SBRT) which is still not proven but looking like it may be headed that way, and E (Celebrex and zometa) which is proven to reduce deaths 20% or more and I feel like I’m doing all I can. Add in reduced body weight , hard exercise (which had lots of science behind it reducing deaths) and healthy eating and I feel like I have a chance for a longer term remission. I don’t do a lot of supplements because I’m afraid of potential results, but I will go to Canada soon to get my fix of cholera vaccine. My MO supports it all with the possible exception that he’s not sold on the vaccine yet.
The early theoretical studies were mathematically based. And the math apparently indicates, just killing a little more on the first wave, suppresses the rebond a whole lot more than is otherwise intuitive.
And the actually clinical trials appear to back this up.
Thanks for posting good news. We need more of that here. It sounds like to me that you’re doing things right. No signs of lesions is the best pat.Stay the coarse 👏🏼🏃♂️
Thx for asking. I feel great. I’m 63 so a little sore now and then but generally great. But I felt very good while on Lupron and Zytega. I’m convinced it’s because I weight trained very hard. I actually gained muscle mass on Lupron.
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