Could anyone tell me why some people do better than others? Are there many strains out there of PCa? I haven't had a PSA in like 3 months but I've had a .04 last time. I was diagnosed in mid 2012 and it's been lupron and Xtandi. I'm at NIH in a clinical trial but others I've known there have died. When first diagnosed I was just on Lupron. I took , however many supplements 8 at a time. I filled empty gel caps with herbs off the spice rack. NIH is mailing my Xtandi due to covid-19. They used to fly me there, back and forth. I get a teleconference with them. It takes 2 seconds really. I take Zyflamend now as the main one either whole body or prostate version. I get Reclast evey couple years (Zometa). I have stage 4, M1, psa 31, doubling 5 months, 3 bone mets. Gleason 9. NIH loosened restrictions on supplements, told me they'd just make me fart more. They want me taking D3, and calcium that's about it. I also take Zyflamend, NAC, Coq10 (last 2 , I took because of a growth on my right lung, since disappeared. ) and a multi vitamin. I come into this forum and it's overwhelming. I know the worm will turn but when? I have fatigue, bone pain, depression, I'm 67. I take antidepressants. One , desipramine, supposedly slows down prostate cancer. NIH scoffed at that. I took a lot of aspirin starting out , was told to quit that by NIH. My theory was eliminating inflammation was a good thing. My bone mets dried up so far. Sometimes I'll take other things like milk thistle, black cumin seed oil, black cohosh. Nettle seed, lots of tomatoes, and pomegranate juice. I also take Gaviscon due to reflux. I'm waiting for the other shoe 👟 to drop. I feel for the people in here. I don't drink or smoke...I don't know if this will help anyone. It's in that spirit I write. Happy Holidays 🎉!
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I am tempted to answer . So I will. Yes...there are different shades of prostate cancer...anywhere from what I call "doves" to "vultures" Doves are simple, Acinar Adenocarcinomas with Gleason Grade 7 or less. Doves do not go in organs other than bones or lymph nodes. Doves secrete a lot of PSA. Doves PSA drops hugely after removing testosterone./DHT from body. They also do not have more germline and somatic mutations.On the other hand, " Vulture" types are small cell, Neuroendocrine, Ductal and cribriform patterns. Vultures not only go in bones and lymph nodes but also invade organs like liver, lungs etc. They secrete very little PSA and removing T/DHT do not drop their PSA to 0.2-0.4 level. If I keep writing about other differences ,it will take about 20 pages ..so I stop. You get the point. And, There are all shades in between "doves" and "vultures" /So identify , what kind of bird is your PCa? Is it "Dolture" ? Possibly.
Coming to herbs, spice and supplements...I will not open pandora's box today because some here are truly allergic to them. I take them and lots of them.
Now, Coming to your Mecca,,,NIH. NIH is a wonderful organization and they are doing their job pretty well by telling you not to take any supplemental stuff....because "it can confuse the poor souls at NIH" if a herb or spice ends up fixing your PCa and they publish that there is a newer kid on the block, (new drug) who did it. So they describe any complementary stuff in ugly words ("will make you fart") to dissuade you from anything other than their own testing stuff. Reasonable.. Huh ?
"Took a lot of Aspirin" ...not a smart thing...Bleeding can kill you before PCa does.
Anti depressants such as Sertraline, Desipramine and phenelzine are whispers of shadowy PCa researchers as they do "something'something" to PCa stem cells. But, not yet ready for prime time. Post is getting too long. Happy Thanksgiving to you and your loved ones.
You are correct. For myself when diagnosed I had al Gleason score of 9 and PSA was 39. I was told I had 5 to 10 years. That was 28 years ago.
I too have been through a mountain of treatments and supplements. If you would like some wisdom from an old timer, keep up your vitamin D3 level. IP 6 is a good choice plus I drink a lot of green tea, sensha from Japan.
Thanks, anyone out there take niclosamine or niclosamide the anti parasitic? I order some a year ago but never took it. It's in trials for covid 19 and other things like cancer.
Yes, depending on your own and the cancer's genomics, and the external environment, the prostate cancer is very different.
Which trial are you on? I understand the desperation that leads you to take all of those supplements, but understand that they may make the real treatments you are getting less effective, interact to increase toxicity, and interfere with biomarkers that are used to track your progress.
Right , it's probably a way for me to think I'm giving it my all. In reality it may make things worse in the long run. I entered the Prostvac , Xtandi trial . Prostvac is a fowl pox vaccine. I think this came about because a woman with advanced breast cancer got the measels or chicken pox, and her cancer was gone. Maybe the secondary infection caused an activation of nk killer cells or something along those lines. So the idea to put these together to see what happens. There were 2 arms Xtandi and prostvac , then another arm with Xtandi alone. I got in the Xtandi alone arm. So I'm on Lupron and Xtandi because you had to remain on major androgen receptor blocker. So after 2.5 years on Lupron I got Xtandi added. That's pretty much it. Since that time they're indicated the Prostvac and Xtandi was no better the Xtandi alone so I continue to get Xtandi. I've been taking the full dose no interruptions 5.5 years. It does cause side effects; like fatigue, nausea, hot flashes, breast enlargement, all the usual misery that accompanies Lupron and Xtandi.
The fact of the matter is.....No one knows why! Doctors spit out many theories but they are guessing. I was supposed to be dead 4 years ago. My PSA is currently <0.1 with a side dish of zero pain.
Happy Holidays. Only 3 bone mets and they dried up sounds good to me. 5 and a half years Xtandi is nice. We all have the "waiting for the other shoe to drop" feeling. Maybe time to move on from Xtandi? Your doc should have a plan.
Best of luck. We're all in the same boat, battling different currents.
I wish you a long and prosperous life kicking this bastard of a disease. Thank you for participating in a clinical trial. I did also in 2004. I would hope that your researchers know every supplement with dosage and frequency. I can’t tell you if they help or hurt. Nalakrats is a supplemental type guy however his researcher is aware of each one that he takes...... and that, in my uneducated mind, is important. Me? I have never taken any. But that is me.
When I started my trial, I was asked for a list of supplements taken. The reason was simple. “I don’t want my results skewed. Some supplements may help, but the majority do nothing except screw up biomarkers that I depend when rendering results. If you add a supplement, I want to know about it up front. If I see no problem, then I will give you permission,”
I see the major differences in our disease centered around, quick identification that there is a disease, reaction as soon as mets develop, body health, scope of tumor burden, and tackling micro-metastatic cells before they colonize.
It’s not a perfect world, but, in my opinion, knowing the above let’s one deal with the different types of “run away mutant” cells and their various mutations. Unfortunately, in Texas lore, some draw the black bean.
This is the major reason that recommendations from a group of medical field statistical people, not one who has experience in treating advanced prostate cancer, made a stupid decision to forgo PSA testing. In one month, I would have been at this game for 18 years. Since the recommendation by the panel of non pros, I see a definite uptick of metastatic prostate cancer upon initial diagnosis. I admit it, I am biased. So biased that I told my son at age 40, F****’em, they know not what they do. Thankfully, he has his PSA drawn every year to chart.
Case in point, in the organization where I worked with 100 men, PCa detected in seven over a five year period before the advent of some panel of “experts” ages: 40, 42, 48, 54, 55, 60 and 62. Gleason ranged from 7 to 10. All had primary treatment of either radiation or removal. Two were most likely metastatic at original diagnosis - ages 54 and 55. . The others have remained met free. PSA required on annual employment physical.
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