The specialists still offer only one initial treatment, androgen deprivation therapy, which may lower PSA levels for a time, but opens the door to a host of deleterious side effects, some of which doom the hapless patient before the cancer does.
After reading hundreds of academic studies, learning that chemo and ADT can seriously disrupt a healthy lifestyle and are of limited value in changing the course of the disease - nothing curative about them.
The old guard and the embedded pharma companies find no profit in cannabis, novel off-label drugs like fenbendazole or supplements like curcumin, with academic studies demonstrating efficacy in killing cancer cells. The medical establishment has blinders on and refuses to acknowledge healthier options to dealing with metastasized prostate cancer.
Instead of battering the body with toxic chemicals that will fail, leaving no natural resistance to fight the surging cancer, isn't it time to get serious about options that do not destroy the immune system, especially in the age of pandemic?
I asked my oncologist if he had any treatments that strengthen the immune system. He responded immediately. No need to ponder. "No."
I reject the "one size fits all" policy of the cancer industry, even during the plague.
So, my question, have other patients refused the standard ADT and chemo offerings to try to create their own cocktail of remedies*?
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WindChaser
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Yes lots of people have tried alternative therapies. I went down that pathway myself when first diagnosed - desperate to avoid treatment side effects. It's a hard road for a layman and many of the practitioners/advisers have minimal training, in contrast to medical professionals. Cancer is a disease that can take someone from apparent good health to death in several months. As per its title this forum is for people with advanced prostate cancer(that means incurable) so treatments discussed are palliative.
Early stage, possibly curable disease is a different situation. But the bottom line is a person should lead a healthy life maintaining a healthy immune system over their whole lifetime. Once you are seriously illl it's really a bit late to change things and rebuild/recover.
Regards to all
John
Adt buys time. In some cases lots of time. Perhaps enough time that something like this becomes available. healthunlocked.com/advanced...
Things are not static. The treatments you have today will not be the only treatments we have in 5 years.
I concur as the goal is to try to maintain QOL and live life to fullest in hopes new technologies are more effective. Also, ADT is not the worse treatment regimen in the world as you adjust and can live a new normal.
I'm not that knowledgeable about advanced prostate cancer, but everyone I've met who has the kind of serious disease and prognosis as many here, don't have this kind of disregard for proven treatments.
Most of the guys I've known and see here with stage 4 are focused on extending their lives as much as possible, not promoting conspiracies about the medical establishment that's helping them stay alive. Just something I've noticed.
I appreciate your comments, and I agree. My cancer is recurrent after having RP and Radiation. My psa is doubling every 3-6 months. I’m not at all shunning standard of care, in fact I’m following it. My main goal now is to find any adjuncts that have scientific study behind them that might help extend the ADT cycle and/or keep the cancer from becoming castrate resistant. I have 7 wonderful kids ( the youngest is 9) that I want to guide into adulthood, after that I’m just fine with leaving Terra Firma. The two scientific studies that seem to offer the most hope (and actually infer the possibility of restarting the ADT process) are the John’s Hopkins BAT clinical trial, and the Lucia Nappi study done at Vancouver Prostate Cancer Clinic. I’m actually surprised that with all of the folks on this forum who are experiencing castrate resistance, it “seems” that there’s very little interest in pursuing the latest research on restarting the ADT process. Thanks again for your input my friend.
You might want to extend your time on earth, my sons are right around 50 and they still need a little guidance from time to time and then of course there are the grandkids...
I'm going to jump in here. My husband is now in his 18th year with advanced prostate cancer and still receives the 6th month Lupron shot. (read my bio for full story) He's had little to no side effects. He leads a full, normal life for a 73 year old in good health, except for the cancer. He still rides his Harley once a day and has put in a beautiful flower garden here at the condo. We'll be going to the beach daily after next Monday. He'll be out paddling the kayak then.
Thanks, Katy. The one that gave him side effects was Zometa infusions which he received monthly. Each month the side was something new! We never knew whether it was the cancer cranking up or just a side effect.
Getting back to Windchaser's question: "Have other patients refused the standard ADT and chemo offerings to try to create their own cocktail of remedies?" Since being diagnosed with Stage 4, Gleason 9 (4+5) PCa in 2012 I have done intermittent ADT for 4 to 6 months at a time, with terrible hourly night sweats that make a good night's rest impossible, destroyed my libido, and negatively impacted my QOL. Along with ADT I've had hyperthermia treatments, used mistletoe injections, and since 2018 have been on the Care Oncology protocol (careoncology.com/the-coc-pr... which uses a cocktail of drugs that have shown off-label efficacy in anti-angiogenesis and pro-apoptosis. In 2019 imaging revealed a nodule in upper left lung that was 'suspicious' for metastasis so I chose lobectomy of the upper lobe. In 2021 I had PSMA Ga68 imaging at UCLA which showed only faint uptake in two areas (bottom left lung and right lymph node under diaphragm). Yesterday (3/15/22) I had Pylarify imaging and today results came back: "Negative Pylarify PET CT skull to thighs. No findings of locally recurrent or metastatic prostate carcinoma evident." Not saying my plan of action is the answer for everyone, but it's good news for me in my tenth year since diagnosis. Windchaser, I hope my experience answers your question.
It buys time and the side effects are minimal with me. I eat a healthy diet, exercise, work a part time job 21 to 23 a week. I am on xgeva and the ADT.
That’s great to hear! I’m very happy that you are having success. I’m just embarking on the ADT journey. I have recurrence after RP and Radiation. I was told that going on a antagonist has less side effects than using an agonist. Any thoughts on that? Why did you refuse Lupron?
Suck it up, buttercup. Have you ever had surgery? Have you ever had any medical treatment at all? The list of potential side effects is always daunting. Before my prostate removal they read a list of potential side effects that seriously took almost 3 minutes and it scared the bejeezis out of me. I had the surgery and am alive to talk about it.
I've been on ADT for two years with no serious side effects, just some fatigue. Everyone is different. Save/prolong your life and do it.
Re 'trying to create your own cocktail of remedies'. I experimented withHyperthermia
Iodine treatment
Multi wave oscillators
High dose lypospheric vit C
Pulsed Electromagnetic Field therapy
Herbal supplements
Etc etc etc
I'm still here 7 years on. Did any of it help - I dont know. Some did no harm. Some did make me feel worse. Some may have worsened my outcome by delaying conventional treatment. Again I dont know. I spent a reasonable amount of money on it all whereas conventional treatments are funded in my country.
At the time it did make me feel I had some sort of control of things which was positive I think. Bottom line was PSA kept rising and accelerated so after 18 months I went down conventional path. What I was afraid of wasnt as bad as I feared, it wasnt great, outcomes weren't perfect but there are enough positives. I actually dont regret getting prostate cancer, it's a bitch but you certainly do develop as a person and get some insights that you wouldn't otherwise.........
I appreciate your babbling, and your perspective about not regretting getting prostate cancer. It does put everything in it’s proper place - spiritually, financially, relationally, (grammatically? I mean with all the acronyms…really!!!) And, it has given this 61 year old guy a level of compassion that I’ve never had before. How many things in life give you that kind of education? Thank you for your input my friend. God bless you.
I have not. I took a bit of time reading about my newly diagnosed condition before starting ADT, much to my urologist's consternation. I moved to an oncologist eventually and started Lupron.
I do many alternative things, too many to list here easily. But I wouldn't advise anyone not to at least do ADT to get it under control.. It is raging, after all.
After starting ADT, then you have bought time to experiment with numerous other things. That's how I look at it.
Thank you for your response. You are very gracious. My main goal is staying alive to help see my 7 kids into adulthood (the youngest of which is 9). I had 2 months from diagnosis to RP. My psa was 12.6 at the time with Gleason 9. I began a supplement regiment for those months and my psa before surgery dropped to 8.5. I thought about holding off on the surgery to see if it would drop more but I chickened out. Probably for the best. But I can’t help but think that there are adjuncts to standard of care that can nail this thing. I stopped doing any supplements after my radiation because I was undetectable for almost a year, and thought I had beat it. My cancer is recurrent now after having RP and Radiation. My psa is doubling every 3-6 months so I’m ready to embark on the ADT leg of this journey. I’ve cut out sugar and have become more disciplined in my eating habits. I’m also on a am/pm rotation of well known supplements (curcumin, berberine, cbd, mushroom extract etc..) I figure they seemed to help before the surgery so why not employ them again. My main pursuit now is finding what scientific research is out there to extend ADT so that it doesn’t become castrate resistant. Russ Hollyers accumulation of info on BAT clinical, as well as a recent study by Lucia Nappi from Vancouver Prostate Cancer Clinic seem to offer the best scientifically based options to keep ADT in play for a longer period. I’m grateful for men like you that I get to traverse this path with. God bless you.
I would suspect that there aren't that many people on this site for very long who go down this path. I took the opportunity for RP and Lupron/Erleada without which I'd be dead, and I wasn't willing to put that to the test.
I thank the brothers here. So level headed, circumspect, intellectual.I have a raging rampage response that I typed up yesterday and didnt send. I kept contemplating it.
I am glad I didnt. My brothers here have kept their cool. I would have been the odd man out.
Not to be critical as all adults are responsible for the decision they make in life, however, my experience shows that those who play with fire and dance with the devil, become sorely disappointed in their decisions.
Nothing has changed, a Gleason 9 indicates a highly aggressive disease with at a minimum indicates micro-metastases which in short order finds a spot to colonize and grow. Cancer is simply a mutant cell which rapidly divides if left on its own. At some point the mutant cells destroy its host.
Boils down to a choice, fret about side effects and seek alternatives or fight with all the tools medicine has to offer to enable one to watch their family prosper. Almost all treatment side effects can be managed.
I wish you the best in fighting this terrible disease.
A very good friend, Paul Reale (a friend for over 60 years) passed away from PCa about 15 months ago.
He had Stage-4 PCa and refused ADT. He was a composer (professor emeritus from UCLA) and he worried that the ADT would blunt his creative skills. He was 77 when he passed.
He tried keto, he paid for Provenge treatments out of pocket (insurance wouldn't cover it since he hadn't done ADT). He paid for LU177 treatments in Germany and Australia - but Covid brought an end to those treatments.
In the end - PCa won. He knew it would eventually win, but he wanted to go out on his own terms with his mind intact. We had discussions on why he chose not to do ADT (since I was doing it at the time), and he said in my case there was a possibility of curative treatment, but in his case, all it would do is perhaps extend his time, and he decided to take quality over quantity.
Probably the smartest man I've ever known (and I have personally been friends/collegue with 4 Nobel Prize winners - all in sciences), he is missed greatly.
I bring up Paul because he decided against ADT for a reason, believing he'd be more productive (and he was right up to the end..) if he didn't do it.
I’ve been battling PC since 2008.. Radiation twice, was on ADT treatment off and on as I couldn’t cope with the side effects. February 2023 I made the choice of quality vs quantity. I’m traveling and enjoying life while I can.
I was diagnosed with PSA of 105. Urologist immediately prescribed Casodex and zoladex. Then after biopsy and scans it was determined I had metastatic disease. I was G9 and the oncologist said I would need chemotherapy. This scared the crap out of me. I looked at all the different options, went to natural path doctor and was reading all the horrible side effects of chemotherapy. Eventually I came around and followed the science and got the standard of care I needed. There are many men before us that have volunteered in medical trials so we could have the treatments we have today.
I thought about it! But I would have been dead without adt …. An aggressive APC eating one up is imho is worse.
I was reticent about ADT but started Orgovyx about two weeks ago. One pill a day. Have had zero side effects...and according to clinical trials after 15 days 99% has T level reduced to castration. After a month avg PSA reduction was 84%.
I have had RP....39 radiation treatment of prostate bed....pelvic lymph node dissection due to metastasis to lymph node that was putting pressure on ureter backing up to kidney.
Three months after my PSA was 0.33...but has tripled every three months to where it was 12.9 in mid February. No other option than ADT....with Orgovyx my MO tells me I will be on it for 3 or 4 months then off for 8 or 9 or such time T level and PSA dictate going back on. Intermittent ADT preserves quality of life and buys you time. Not a bad bargain given the alternative...so do some research and see if it might work for you.
Hello Starstation. I happen to see this reply of yours and was wondering how intermittent Orgovyx is going? I have been utilizing intermittent leuprolide for since 2018. Thanks.
I was on Orgovyx for 11 months....worked amazingly quick and effectively. MO then told me to take a break and i have been off of it for a year....PSA continued to be undetectable...then slowly returned....0.03....0.11...0.33 when I last saw MO at Emory in early December I asked his of his patients that take vacay from Orogvyx how long before they go back on it....he said it averages about 6-8 months....and think I have another 3 to 6 months off before going back on it....so that made me feel good.
Hey Starstation. Thank you for the information. I've been back on uninterrupted leouprolide since January. I hope to be in a position to take a break from androgen eliminating medication again at some point. How is the intermittent ADT going?
Yes Cannabis Kills Cancer on Facebook and web , also How to starve Cancer book by Jane Mclelland also on web are resources.
Also I’ve done Zytiga for two years now with minor side effects from a onetime PSA of 3500, not a typo now down to .1 for over 6 months now. My take is that each of us has a different experience with treatments. I am grateful and cognizant that it may stop working any day.
Yes, I have since becoming stage 4 in 2017. G9 with lymph node involvement. I have followed the COC protocol and Joe Tippens protocol (Fenbendazole) simultaneously. My PSA is bouncing. Big drops, then slowly climbs and then another Big drop and slowly climbs. My lymph node involvement went from 2 to 4 as of 2020. Getting a new scan next Monday to update. There are some on here who are adverse to the choice of quality over quantity, but be strong. We are all searching or we wouldn't be here. Here is an older thread that I review from time to time. Poor Op got chased off... healthunlocked.com/advanced...
Im 58 had PC with 4 lymph node stage 4 gleas 9Was on lupron, Erleada , Xyandi for 9 months. Stopped 15 months early with PSA 0.2 And I will not go back on. It’s been almost 18 month on just good diets and lots of exercise . Doctor says I m shorting my life span. I would take the last year playing hockey, Golfing and having a great sex life.
Then 4 years of living of lupron and Erleada, xtandi . It’s not about living a life we’re you cannot do anything. Hot flashes, no focus, no energy. No Sex life. Every night you feel like your going die.
Hey brother- I don’t judge, I’m considering dropping ADT too. I did a high-T clinical trial couple years back and pushed my T to over 1200; I felt like Superman!! I’m 52 now except for the trial, ADT for 6 years now. My pecker shrank so much on ADT I can barely piss while standing. Good for you brother!! Stay strong
My husband was given a three month Lupron shot. We started with one month and was not bad, but now the three month. It has been six weeks. He can’t eat, no taste, tired. This is a man that was never tired in 50 years of marriage, healthy and world bench press champion….now this. He feels groggy with no energy and a feeling of malaise.
Wow, that's ballsy. I am stage 4b metastasis to bones. I been lucky feel pretty healthy despite the hot flashes. I am on Lupron and Xtandi, will see how long it works and how long I feel healthy...play golf twice a week exercise 5 days a week and I am sexually active. So far so good....
I believe that a key strategy is reduce chronic inflammation. Cancer and chronic inflammation go hand in hand. As your cancer progresses then so will inflammation. Using things like Curcumin, chaga tea and others look like sensible things to try. Just be careful they don’t unexpectedly interfere with any treatments. People are different and have different results. That to be doesn’t mean you shouldn’t try though.
Make sure you research what you choose to use though. For example, Curcumin IMO is extremely powerful and positive for your immune system. But you have to take it in large doses. Make sure you’re using Curcumin and not turmeric. Also make sure you’re using Curcumin where they have not used dichloroethane in their extract. That is carcinogenic and you have to be careful.
Surgery July 2009 P3b, refused hormone and radiation therapy. Been taking multi-strain, broad spectrum cannabis oil that I produce from seed myself. PSA remains undetectable, blood pressure low and arthritis from the hips on down has vanished. Plus no more respiratory infections. When I started this DIY cancer journey I decided that when presented with a large variety of cannabinoids my body with pick what it needs and discard the rest. I think I'm right.
Yes there are patients with metastatic prostate cancer who don't want ADT due to a myriad of reasons..preserving libido, preventing possible cognitive changes, fear of loss of muscle mass being the common reasons. While the standard of care in hormone sensitive metastatic prostate cancer is still total androgen blockage, there is some emerging data on the use of locoregional therapy like SBRT/Proton therapy and also Lu177 PSMA therapy, especially where the metastatic burden is low.
WindChaser, you are not alone, stay the course! Please read Jane McLelland’s story.
Yes... after 1 six month shot of Eligard administered at the Atlanta VA, I refused any subsequent treatments of anything related to ADT.... Since I am 100 % service connected disabled I was able to get into the program allowing me to see Doctors outside the VA... I simply explained to him what I was willing to do as far as treatment... that was almost 3 yrs ago... my psa has been undetectable since reaching nadir after initial shot... I'll be the first to admit that I have been extremely lucky... I also know that one day that luck will run out... I'm just hoping for better options when that comes about...
I went down a rabbit hole and came up, reading your post. I may get blasted by some people in this community for asking this, but have you heard about Gerson therapy for cancer? Look it up. I don't know a lot about it, and the "scientific" (read: corporate) community seems to be against it, but there are believers out there. I tend to lean with the believers.
Oncologists know nothing of nutrition or immune support. Neither much do General Practitioners frankly. Try to get a functional / integrative wellness/medicine doc.
Worth the spend and they can guide you for diet and supplementation as well if that is your desire.
Like Ronnybaby in this thread for my choice, I am dealing with local mets in 2 pelvic lymph nodes, just finished IMRT radiation 20 fractions, and have been on Bicalutimide Monotherapy 150mg day since May and PSA went from 14.6 to .11 now .
The radiation side effects honestly have been brutal. Worse than I expected. Extreme fatigue and stomach aches, bloating, diarrhea, decreased appetites.
QOL on the Bical is better, very few side effects, minor muscle wasting, fatigue, some gynecomastia but my sex drive still shimmers here and there. Etc.
And as some older more jaded folk here may protest to this not being standard of care, it still is used widely in Europe and Canada, and is what was right for me.
Its a candy store of options out there. Pick your poison! Best of luck.
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and then of course there are the grandkids... 
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