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Had RALP mid 2011 <0.1 PSA; Bio Recurrence 6/15 0.4, Radiation 9/15 <.01 PSA. Rising PSA 02/17 0.1. Doc is waiting for 0.4 to start Scans and treatment. Just wondering if anyone in a similar situation now or in the past can offer any advice regarding supplement or treatment prior to Bio Recurrence. Just started taking Pomi-T and Green Tea.

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  • Welcome to the group! Sorry that you are here, but I hope that you get as much information and comfort here as I do. Please know that while people will offer advice, in the end it is up to you and your doctors to decide how to treat it.

    With your PSA at 0.1, you may be a candidate for a C11 PET scan, which is a lot more sensitive.

    The number one supplement that I take is modified citrus pectin (5 grams three times a day). There are studies showing that it helps prevent free cancer cells from combining. The other main thing that I stay away from is diary. Studies have shown that the hormones in even organic milk act as a superfood for prostate cancer.

  • Thank you Dr_Who! I will order the modified citrus pectin tonight and thanks for the C11 Pet scan tip. Gathering this info to discuss with my doc in May after next PSA test result. I have a Radiation Oncologist at Hopkins who I assume will be sufficient; meaning I don't know whether I will have other doctors now that I am post-Radiation treatments.

  • Not in a similar situation, but welcome and good luck.

  • Thanks Fairway and best wishes!

  • You've been the urological and radiation oncology routes, and your cancer outlasted them. It's time to branch out to the other TWO other fields: whac-a-mole and medical oncology.

    The whac-a-mole guru in the U.S. is Dr. Eugene Kwon at the Rochester, MN Mayo Clinic. He has the only c-11 choline PET/CT scan system in the U.S., and uses it to find PC recurrence spots very early in the hopes of using pinpoint irradiation or pinpoint surgical excision to eliminate them. The goal is long-term remission. It should work quite well if there are just 2-3 discrete tumors and their locations are amenable to spot repairs ... whac-a-mole, as he calls it. Too many such metastases, like he found in me, and it's time for systemic treatment by the last-chance specialty: medical oncology, as in ADT (aka hormone therapy) plus chemotherapy.

    Another scan option is a c-11 acetate PET/CT scan in Phoenix. It and the choline version have relative pros, cons, and overlaps. It wasn't readily available when I began my choline scans, so I'm not as familiar with it. Each scan can find some tumors the other cannot, so it would pay to pick the "correct" one first according to where your metastasis is. (I presume you see the challenge in that.)

    Because medical oncology drugs have such extremely nasty side effects for most people, they and their providers must be carefully selected. I consulted with four very different such sources before choosing one hands down. First, the Mayo Clinic. Prescription? Standard of Care (SOC), off-the-shelf can of PC Whoopass, aka ADT + chemotherapy, guaranteed to end our lives (because ADT drives our cancer from treatable (androgen-dependent) to terminal (androgen-resistant) unless something else kills us first. The median survival time on SOC Whoopass is a little over three years, with excursions from months to a decade on the two sides of its bell curve.

    In the hope of better odds, I went to the Pacific Northwest's answer to the Mayo Clinic, Fred Hutch Cancer Research Center in Seattle. Consulted with one of their med oncs who directs their genomic research program hoping to get more cutting edge advice. Prescription: One Can of SOC PC Whoopass. It's what U.S.-based big cancer institutions do if they want the grants and publications access to keep flowing.

    I can get One Can of SOC PC Whoopass from Local Guy at a big medical oncology clinic 7 minutes from my home, so I consulted with them. Sure enough, One Can of SOC PC Whoopass ... but willing to work with what was emerging as a superior option, IMO: Drs. Leibowitz and Eshaghian at Compassionate Oncology Medical Group (COMG) in Los Angeles. Leibowitz has been using SOC PC drugs in cutting edge combinations for decades, beating places like Johns-Hopkins and Fred Hutch to the punch by up to 20 years in some of the protocols they are just coming around to. I talked for hours this week with some of their patients in my home town (their PC-only patients fly in from all over the world) who were given a year to live on One Can of SOC PC Whoopass from Fred Hutch ... in the 1990s. Those various patients now play tennis and soccer, lecture at universities, work full time and/or travel the world, and largely -- not all -- got off their Can of SOC PC Whoopass MANY years ago. One sounds 40 and vital, but is at the end of his rope 18 years after he was told by a big institution to get his affairs in order. Another sees no end in sight 19 years after the same verdict. One had serious permanent chemobrain ... could barely muddle through a conversation ... but was happy years after every other oncologist gave him no hope, and that's what counts.

    I'm combining doors I and II. I'm going with Compassionate Oncology's Three-Pronged Protocol (Google it) with a common twist: my Local Guy medical oncologist will administer it under COMG's direction. I'll go to LA every month or two for close observation, but the vast majority of my pills will come in the mail from LA or from Walmart, and most of injections and infusions will be administered by Local Guy around the corner. COMG stays VERY closely in the loop every inch of the way. Just yesterday, for example, COMG faxed an order for lab work to the lab 5 minutes from my house and notified me to fast overnight and get some blood drawn the next morning. By 7:30 that was all done, and before 9:00 AM most of the results were online for my and Local Guy's viewing and faxed back to COMG. Medical questions phoned or emailed to COMG are answered within hours if urgent, a couple of days if not. Similar questions of Local Guy and the big hospital his clinic is in took weeks before I discovered two solutions:

    1. Walk in with two fat books, leave a request at the front desk, and politely inform them that I'm not leaving the reception area until I get an answer.

    2. Use the main hospital's online patient portal ... the one they conveniently forgot to inform me of.

    I now hope I have the best of both worlds: thorough (face-to-face consults at COMG run from 2 to SEVEN hours), very interactive (EVERY question gets answered), advanced, highly tailored (constant lab testing to tweak the drug protocols) from PC-only medical oncologists whose work is being watched and often emulated by big institutions ... plus big local SOC clinic to inject the Can of SOC PC Whoopass stuff in my veins under the direct blending and timing supervision of COMG.

    Their patients tell me they LOVE COMG's people and treatments, and owe them their lives. I'll have to get back to you on that; my only contacts so far have been via emails and lengthy phone consults. .

  • I forgot to address your rad onc's advice about waiting for your scan and taking supplements ...

    May as well wait, since the scans often find nothing as early as 0.4 ... or 4 ... or even 40. It's a matter of their size, number, location, and other factors. Even under great circumstances, finding one at 0.4 would be pretty amazing. Not to worry ... Kwon says a PSA of a few hundred is nothing to worry about if it's dispersed, and if it's not, they'll usually find them sooner.

    As for supplements, especially after reoccurrence ... take 'em if they taste good, if you can afford them, if they aren't harmful, and if they buoy your spirits. Otherwise, they're of no proven advantage, especially once the cat's out of the bag (i.e., once we have cancer). Pomi-T and MCP have been shown to be useless then, so make sure you take them with a large grain of salt. :)

    As for dairy, and meat, and sat fats, and fruit, and all the other cancer-related nutrition advice ... I've studied nutrition for thousands of hours and cancer-specific nutrition for hundreds of hours, asked multiple leading cancer researchers about cancer nutrition several times over the years, and paid an integrative oncologist good money to advise me on cancer nutrition. I've been through several cans of MCP, gagged down one bottle of Pomi-T, eaten a LOT of Brazil nuts, and put salsa (lycopene) on a huge variety of foods ... all before the research disproved all those rumors and many more and many wishful thoughts regarding existing cancer. (The problem with the Brazil nuts is the wide variations in the selenium in the soils; I get my selenium in my MVMM from Thorne Research.) I'm now down to (and with) salsa simple because I've always loved its taste.

    I now eat for overall health, not cancer. I'm no expert, but I am CERTAIN that I know some vital nutrition issues better than most nutritionists and CERTAINLY most doctors do. I'm still kicking myself in the butt over the number of decades I actually, blindly trusted my doctors and the government to guide my eating habits. Don't misunderstand; I'm not an anarchist or anti-establishment. Rather, I'm anti-BULLROAR, and there's a TON of bullroar out there. MANY leading oncologists are very convinced that nutrition plays a big part in who gets cancer, but they can't ... quite ... get ... it ... right on HOW or which nutrients help or hurt cancer, especially once diagnosed. Cigarettes? Check. Abdominal/visceral fat? Check. Singed meat? Check. Plastic food containers (NOT just BPA)? Check. Most of the other things we deliberately ingest? Not so sure ... except for the CRAP in our Western diet and the carcinogenic visceral fat it generates in at least 200,000,000 U.S. residents.

    You, of course, have no way to know whether my opinions are BR or valid, and I am firmly convinced now that I was once VERY wrong on one MAJOR nutrition issue for decades (thanks to my government and my doctors). Your only truth detector is to read about nutrition for your own hundreds of hours ... more if you really want a handle on it. Just a few of its benefits for me and my wife have included dumping all our prescription drugs years ago with our doctors' stunned medical approval after our dietary tweaks rendered their drugs unnecessary, improving all of our health markers dramatically, shedding well over 100 pounds of fat together, feeling MUCH better in many ways, curing specific medical problems our doctors could not, and eating our fill of great food as often as we wish. Now when some nurse asks me question number 14, "What prescription drugs do you take?", I watch her eyebrows go up when I respond, "None". The when the doc asks me to confirm that because it's apparently rare at my age, I just ask, "For what purpose? Do I need any?"

    Sorta ticks me off now that I have to add "Firmagon, and probably a dozen more hard anti-cancer drugs soon." The free ride was fun while it lasted, but I hope to be able to say "Just megadoses of testosterone" a couple of years from now.

  • First off thank you for your response and I wish you the very best outcomes in your treatment.

    Thank you for your thoughts on eating healthy; I have lost 20 pounds on a sugar-free low carb diet over the last 3 months (slow and steady) with a goal of a pound a week for the next year. Currently 6'2" 260 pounds. I will continue with this diet but will also take the supplements since I have already purchased them and it makes me feel like I am doing something.

    The only medication I am on is Lipitor and baby aspirin (Would like to be on none).

    Regarding treatment would you say in a perfect world I would go see Dr. Kwon and also Phoenix to get scanned by both Choline and Acetate Pet Scans to find any and all tumors? Or, is this probably not a viable option? I am on wife's Carefirst PPO Insurance.

    I live in Maryland outside of DC and my Rad Onc Doc is at Hopkins. If the Mets get out of control and I go to COMG in L.A. would my current Rad Onc Doc be my "local guy" that would administer their meds protocol?

    Look forward to learning more from you and appreciate your experience and your willingness to send it my way. Thank you very, very much!

  • I read recently, but have not verified independently, that the faster we lose weight on a ketogenic diet, the longer it stays off. Many obese people lose 5 or 10 pounds a week for months, while getting healthier and feeling better the whole time. This goes way beyond keto's initial water weight loss.

    I don't know which of Lipitor's claimed benefits you're after, but a keto diet will very often make it, as well as many other very common drugs, not just superfluous but even harmful because we don't need them any more. High blood pressure, Type II diabetes, wonky lipids, and more can usually be cured simply by diet, including ketosis, even when drugs cannot cure them. For example, rather than taking statins and their SEs for my low good and high "bad" cholesterol figures, as over a dozen doctors told me to do despite statins' hazards, I just quit eating high glycemic foods and began eating a LOT more saturated fats. Just as the literature our doctors ignore promised, the good chols went WAY up, my so-called "bad" cholesterol turned good (LDL-B transformed to LDL-A), and my trigs dropped by >80%.

    It had occurred to me to try both types of scans. I'd have to read more about their relative strong and weak points, but I'd infinitely rather have scans than undergo chemotherapy, and any scan that helps me make an informed treatment choice is my friend.

    I WISH "Local Guy" could be a rad onc! My outstanding integrative oncologist is a rad onc, but we want -- maybe even must have -- a medical oncology specialist to inject and infuse our cancer drugs. That requires finding one willing to work with COMG's protocol, which may be harder than it needs to be because so many med oncs think their Standard of Care procedure is the only valid approach ... despite its many drawbacks. IF NOTHING ELSE, Leibowitz's lower-dose/more-frequent injections of Taxotere reduces the likelihood and severity of its SEs, which are often devastating. I'll bet COMG has worked with some medical oncologists in your area, and can refer you to some. You might ask

    maria@compassionateoncology.org

    about that.

  • Hi Moespy, welcome and sorry you're here.

    I just read this and I have been there. Had RP in 2010 when I was 44 (big family history of Pca). Salvage radiation in 2012. My psa had a doubling time 9 months. When my psa got to .10 my urologist reccomended I have Dr. Kwan's C-11 PET scan for the purpose of locating any tumors that could be removed and hopefully delaying hormone therapy. By the time I had the scan my cancer had turned more aggressive, with my psa almost tripling in 8 months. We found 2 tumors behind my bladder, inoperable. Dr. Kwan was the first person to suggest chemo (along with adt) to me. I hadn't heard of it being used at this stage, so I did my homework, found an oncologist I trusted, and finished 9 rounds of chemotherapy (Taxotere) at the end of December. I'm 50, no way I'm not treating it. The traditional treatment is adt, with perhaps getting chemo when that starts to fail. My thought was why the hell wait for cancer to become hormone resistant? Psa at start was 9.1, after the 1st round dropped to 2.1, after the 2nd (6 weeks) it was undetectable! Scan in the 3rd month showed no sign of tumors!

    Chemo sucks of course, but I got through it and it could have been way worse. Lupron sucks too, and I'm still on adt, probably for the rest of this year. I'm still sorting out which side effects were caused by which treatment. Both wrecked my energy level, but chemo was far worse. Lupron did dramatically lower my libido, which I view as a positive. I'm 11 weeks out and I still feel mostly better every day. We'll see what the next 2, 5, 20 years bring. I plan to be here.

    Treatments and attitudes toward treatment are changimg constantly, but I'm glad I did it.

    Good luck with whatever path you end up on. Take care.

  • Thanks for sharing your story, it is very encouraging to hear that you are doing well. My rad onc thinks it may be years before I get to .4 (which is his starting line for next step treatment) but the more I read, listen and learn the more I want to get the C-11 Pet scan before I get that far. I move between denial, depression and a little despair but in the end, I have the resolve to take action.

    My next PSA test is in May and I see the doc a week later; I have a lot to discuss with him because of your story and others in this forum.

    Thank you again and best wishes.

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