The key to surviving this beast is to never taker your eye off the ball. My plan is to never let the PSA get above .5 and have a Choline 11 Pet Scan every 6 months. With Chemo and or Stereotatic Radiation hit this MF everytime it rears its ugly head...it has worked for me...9 years out and PSA .29...time to bring out the big guns again...scan in july and Stereotatic radiation..also eating 10 lbs of Gator meat a week on Nalakrats rec..the hard part is catching the Gator..wrestling him into submission and eating his liver raw once a month
I think I am doomed. Looked in the Hudson River and there are no gators there. Heard there are some in the NYC sewers but they are hard to find. Good luck with your treatment, catching the gators seems like the easy part for you.
Dr. Nalakrats has a new service KGWT (Kill Gator Will Travel)..Nal will come to your location..NYC Sewers...catch and kill the Gator for $3700 and 25 pounds of meat and the Gator liver...seems like Nal has developed a real taste for raw Gator liver..the only side effect from taking 4 ml of Gator Blood (BIRM) a day.
I agree trying to keep the psa low is a great idea, unfortunately we eventually run out of treatments to beat it back and it goes up. You are doing great with a psa of .29. My most recent is 88 or so, it has been over 50 for a few years now.
I can confirm what Dan59 has said about men with long term survivals and PSAs that remain relatively stable somewhere between 20 and 90 while on continued treatments. Sometimes the interplay of their immune systems, the biology of their disease and "mets", and their treatments can strike such a balance for a long time. I've met a man who has gone about 12 years in such a state, through various treatments.
After my initial ADT had taken my PSA down from 5,006 to 1.0, eventually it started going back up, with doubling times in the 3 mo. range. After resistance had definitely set in, I was very nervous about how my PSA was climbing from around 6 into the 40s as I consulted with more than one specialist, who advised me that on the other side of resistance, the actual number for PSA was less important than what was happening in the body with scans and symptoms, and major PSA trends, taken together.
Eventually, after some genetic testing, a PSMA PET, and some Provenge, I finally went on Xtandi around a year after resistance had started, when my PSA peaked at 94.8. Five months later it has dropped to 3.4, so far.
Should I have started Xtandi sooner? Perhaps. Will it make an order-of-magnitude difference in my ultimate survival time and weighted quality-of-life days, considering where I started? My gut feeling is, "No." I made my decisions, when I made them, under varying conditions of considered information and uncertainties. Eating myself up with "shoulda, woulda, coulda" anxiety is not helpful, in my book. The past is what it was, and cannot be changed. "Today" is the only time I actually have to live, learn, and love.
Charles
P.S. Do you suppose there might be any Gators in the San Francisco Bay or Lake Tahoe willing to sacrifice themselves for some old guys with prostate cancer? I'll have to check around. Ha. Ha.
Pretty sure those little lizards won't do, Charles. But you made me think about what might substitute for gators. Maybe crocs? Heck, I can't remember the difference between gators & crocs for more than a day,. So I'd say if you see one of those, whichever kind it might be, it's time to attack.
Why would the liver have to be eaten raw? I would think broiled with onions, garlic, olive oil, turmeric, salt & pepper would be much tastier & healthier, especially if you used organic ingredients & had organic broccoli & carrots in an organic spicy sauce on the side.
My own reasoning is that, once 'curative' treatment has failed, we are left with palliative treatments. Each treatment as monotherapy has a short mean-time-to-failure. Resistance to treatment does not begin until treatment starts. Therefore it does not make sense to rush into treatment. Chasing after a low PSA might mean becoming refractory to everything a decade or so too early.
-Patrick
And, by procrastinating, we escape the morbity of treatment.
I agree. It is the basis of intemittent hormone therapy. I'd use this with any meds. If I could. After treating a reccurrence for 15 yts. Keepiing psa below 6, I'm going to extend it to 8
but...doesn't any rising PSA indicate that there is circulating colonies or daughter cells? And doesn't this put us at risk for mets developing anywhere the wind blows...? Goal should be undetectable yes? And...Nalakrats...how are you measuring the amount of "Circulating Tumor Cells"? Blood test?
Don't forget the role of abnormal (normal in PCa) coagulation factors. Nattokinase will dissolve microclots. When circulating PCa cells dock on a microclot, they become invisible to the immune system. Otherwise, circulating cells are quickly zapped.
how is the chemo administered..as a 1 time shot...an infusion...and how many times is the chemo administered in each cycle and what are the side effects
First time (summer/fall of 2014) docetaxel once every 3 weeks...infusion with dexamethasone for four months. Second time last November to this past Feb...docetaxel/carboplatin once every three weeks. Been on lupron since July of 2014...did ADT (no longer works). No treatment right now besides the Lupron...PSA went from 0.20 to 4.17 in 3 weeks. Just had test last week...is now 5.98. wtf. But PET/CT scan show no mets other than the scaring and previous location on pelvis. No pain yet...so...not sure what the hell it's doing at the moment. Stems are probably producing daughters which are circulating. Post surgery no nodes were involved...just the mets on pelvis.
Have had an incredible spike in PDA within a couple of months following chemo. Was 0.20...is now 5.98 and climbing. Taking BIRM and just started Modified Fruit Pectin 5mg 3x a day. If it's a met localized to sacrum again then radiation I guess. They want to start Xofigo...but that will affect immune system. May order Gus' alpha lactalbumin. I need a program outside of the standard treatment that fights it at the cellular level. I take 20 mg of Lycopine as well as 3000mg of bit C plus the standard dose of vit D (How much D can you take perday?)
Also taking CBD tincture and pomegranate powder with powdered green tea. Stopped taking creatine and arginine pyroglutimate lysine. At oncologists urging. Read a published study that showed how creatine increased DHT production by 56%.
I am only on Lupron. ADT no longer works. 17% circulating T and when using creatine my PSA rises like flood waters. It doesn't half to be higher than 4 or so for meds to show up. So creatine must be transforming T to DHT even in small amounts and cancer is using it like an old Caddy uses gas. I'm gonna try beta alanine. Helps build lean muscle and it's a powerful antioxidant
I doubt creatine affects DHT but that doesn't mean it does not fuel PCa growth. PCa is hormone driven and muscle growth is also hormone driven. Any substance that helps build muscle is also a potential driver of PCa.
Nal... do.most avoid cholesterol intake to avoid conversion? I had no idea. My onco took me off all ADT except Lupron (Zytiga and Xtandi no longer working) stating that the cancer will use casodex...proscar...etc to proliferate. Estradiol is estrogen yes? How do you avoid the unwanted side effects of estrogen?
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How high must the PSA levels be before cancer can be seen in a CT scan?
Need advice- MO recommending radiation. From the wording in the PSMA scan it sounds like a shot in the dark. 
Rise in PSA
Treatment options for local PC that is resistant to radiation 
Blood in Urine
