it’s been 8 months since I found myself to have a PSA of 70, it is now 0.0 and I am due for the ADT injection. I have coupled standard treatment with rife, mushrooms, ivermectin, fenbendazole, apricot seeds, green tea, vit e, graviola. What is the feeling on the board here should I see if the alternative tx’s will work and keep me in remission?
considering stopping adt/abiraterone ... - Advanced Prostate...
considering stopping adt/abiraterone to see what happens
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I’m on the same road. Ten months of ADT and various holistic and diet efforts, along with HITT brought my PSA down from 125 to < .006 last year. My oncologist from famous Boston hospital is allowing me a “holiday “, mostly to try and boost my testosterone and osteopenia problems.
Been off ADT now for three weeks. Too soon to tell, but I feel no change, either good or bad., thus far.
There is a study just started , called A- dream to study similar patients to us, using an 18 month zero PSA as threshold.
What is HITT?
High Intensity exercise. Basically cardio. For me it is spring swimming and bouncing/bounding in deep end of pool. Some people use mini trampoline
My impressions of your "exercise" is this doesn't seem like exercise but more like a spa treatment, I believe nearly daily intense long exercise has benefit but I'm not seeing that in your comments.
I do not have a favorable view of home therapies. Some merely mask the true PSA number but don't affect the actual score.
Your PSA was very high, did you have PSMA scans performed to see where your PC is located. We're bone mets found?
Do you still have your prostate?
Periods of "vacation" if done should try to incorporate attempts to find and kill PC in my opinion. This is usually done in conjunction with PSMA scans. And usually involve radiation or other targeting therapies.
Certainly you receive benefits of feeling better of ADT, but coming off will take several months before you feel a lot better, and complete withdrawal and complete restoration of your testosterone may take up to a year. You will certainly begin a feeling of well being in a matter of a few months.
You should have a plan for scanning as you PSA rises, doubling time will be an important factor to be aware of, but when coming off ADT you PSA numbers can rise quickly as you cancer reawakens adding to PSA but obscuring your actual doubling time. That may take quite some time to actually determine.
Many times insurance companies want to see a PSA over 1.0 before approving a PSMA scan. Some HMOs and Medicare advantage plans also like to "discourage" you from scans by denying scans.
Spa treatment? lol. Please describe whatever workouts you do , and I’ll pass judgement on those.
I’m swimming 20 laps of a long pool at maximum speed, while doing my own “freestyle “ that involves no taking breaths. At each each end my “rest” constitutes rapidly bouncing up and down. Partly to allow catching my breath , partly to build leg strength, and partly to move lymph. It is non stop for 30 minutes at HITT. try it and get back to me…if you can.
Yes, I got PSMA PET scan, and yes , I got MRI and I got biopsy. Two bone Mets and as per my oncologist at famous Boston hospital “ very little cancer in prostate”, which I still have.
I have a plan,including TOTAL plant based diet and HITT, I’m working it hard, my famous Boston hospital agreed to it, and unlike so many here, it is working .
As a person doing much of your alternative treatment for 4+ years and Lupron for 5+ years, I'd be very cautious about assuming it's the alternatives doing all the heavy lifting. Get scans done, and think objectively.
Totally agree. I was doing alternatives and Psa went from 300 to a little over 5600 in a little over a year. Then went from over 5600 to a little over 1 and still dropping and that was not the carrot juice. I have nothing against alternatives because they kept it at bay for 22 years with zero treatments but when Covid hit things went downhill fast. God Bless!
Why do you keep referring to a “famous” Boston hospital….i am not aware of any problem naming tx centers in this forum….glad your plan is working out for you so far.
Two reasons,
Discretion is always the better part of valor, and all is not peaches and cream there, and I’m on my third MO in less than a year.
and also, to indicate that I’m not just winging it, and am actually working with a Top-3 hospital in the US. When they question me, they in effect, question them.
were you osteopenic when you commenced ADT?
Not to my knowledge and oncologist foolishly never suggested I get tested. However,ADT drives testosterone to the floor, and when tested a few months ago, was at 1
That would be foolish. You may cause your cancer to spread irreparably. You would have no way of knowing.
How do you know that I would not know. I would follow the PSA.
PSA is just a biomarker. It doesn't tell you what is going on on the cellular level. For example, ADT and ADT+Zytiga both can reduce PSA to undetectable levels, but ADT+Zytiga reduces mortality by about 40% compared to ADT alone.
Since Zytiga went generic, I don't see new patients say they are being given prescriptions for Zytiga, instead I've seen Xtandi being prescribed instead. I've commented on this before and given my impressions of this. What is your take?
My husband is on Abiraterone as is our close friend. It’s relatively cheap and it appears to be working. The primary side effects we think, come from from the ADT and not the Abiraterone.
Right what's wrong with a effective cheap drug (Zytiga), it was prescribed extensively for use before Xtandi, and was effective.
It also needed to be used before Xtandi, but the drugs didn't work in the other direction. Meaning Zytiga performed poorly after Xtandi. So the order was clear.
But once it went generic it appears the profit motive caused the now cheap drug to drop right out of the conversation.
I haven't seen that.
When my Psa started to rise on lupron my urologist referred me to an oncologist who sat down and wrote down each treatment in order. That was barring my genetic testing showed no abnormalities. Abiraterone was first then Xtandi.
As it should be!
Hello TA. We have exchanged message before and I, like all, hold your opinión in high regards. With a Gl of 8 and a PSA of 135 in 2018, I did 3 years of ADT with Zoladex and had 10 sessions of RT, all of which brought my PSA down to about .16. With that I went on vacation and in close to 3 years my PSA has risen gradually to 2.9. I am 78 and thinking I might outlast this monster without further treatment. I am in El Salvador without access to sophisticated or quality care. Do you have an opinión on my current thinking?
I think that you will eventually have painful metastases and crippling bone fractures. You may live just as long, but your life will be miserable.
Yikes!!!
"to see what happens" ??? Maybe not much, but you have bone mets and letting those progress is like russian roulette but with more bullets.
It's your life, but remember you're not treating a cold.
You are the pilot of your life. But if I were you, I wouldn’t stop.
I’m
2.75 years PSA undetected but remain on lower dosage of zytiga + H T oncologist suggested for the time being
Your success is due to your standard treatments of RP, salvage RT, and ADT + abiraterone. The treatments with rife, mushrooms, ivermectin, fenbendazole, apricot seeds, green tea, vit e, and graviola did nothing. If you now rely solely on them, you will lose ground. The Rife Machine is about $1500 new. My brother had throat cancer, hated and gave up radiation and chemo, got that machine and died.
Define RIFE
It's an electrical device invented in 1920’s by Royal Raymond Rife. en.wikipedia.org/wiki/Royal...
webmd.com/cancer/cancer-rif...
It was bulky and crude back then, but compact now.
You do know it goes "quack, quack", don't you? I filed a report with Ebay suggesting that they reconsider allowing these unethical and worthless machines from being sold on their site.
I’m rooting for you I’m on a similar path. My protocol is apricot seeds, black seed, sour sop tea, green tea, fresh pressed vegetable juice, oil, turmeric, ginger, garlic, plant,-based diet, vitamin D, K2, purified water, coffee enemas and exercise. Although I lack and exercise because of my job and late hours, I try as much as possible, I think that is one of the most important factors.
The most important factor is turning your whole life over to God becoming one with the Holy Spirit, changing my past, repenting of all sin, and doing my best to become as holy as possible, for God is holy he requires us to be holy.
I’ve been attacked and ridiculed multiple times on this forum for my choices, but I believe you are doing the right thing. Keep up the good work and reach out to me if you would like more information of where I’ve learned all this. I am also trying to decide if I should come off of ADT, I don’t like the side effects or the long-term effects. When I do come off, which is soon I have to be grounded deep into God‘s word and faith that he will see me through. I have been on ADT since August 1, 2023. God bless you and lead you to his word.
You're being ridiculed again (in my mind, at least) . Keep God out of this forum or expect to be denunciated. Where is/was God (the ALL POWERFUL) during the Holocaust, The Killing Fields, the Israeli hostages, the Palestinians, people who die miserable and painful deaths, including infants and children? Do you believe in Santa Claus and the Easter Bunny too?KEEP GOD OUT OF THIS!!!!
jfoesq, The creator God gives you free will to believe or not, I won’t argue with you. There are people on this blog who believe in God and know the things that you mentioned are from Satan. If you believe only what your five senses tell you, you might want to consider researching the creator. You might find everything that you’ve been taught is a lie. Either way, God loves you and I will pray for you.
I appreciate that you will prey for me despite our differences but I do wish to clarify one thing you said. I don’t rely upon my senses nor what I was taught to reach my conclusions. I rely upon common sense and logical reasoning. BTW- would you mind explaining to me where God came from?
This is a blog site to share information to help one another. I’m not trying to push anything down your throat. I simply responded to another brother and what I believe. If you don’t like it, move on. I’m not going to argue with you. There’s way too much to say about my beliefs. If you would like to talk to me, I would be happy to share my number off line to have a one on one discussion. That goes for anyone who seriously wants to discuss God, Jesus, The Holy Spirit. If you just want to argue, I’m not interested.
Well, can you explain where the Universe came from? This should be interesting.
What a stupid question. I hope you can do better than that. Some people are satisfied with the fact that many things can not be explained. We don’t need some fanciful belief in God to explain the inexplicable. Again, I urge you to keep religion and God off of this site and just keep it to yourself.
No more stupid than you asking where God came from. It always amazes me how a reference to God results in such angry responses.
Oh yeah- one more thing. Assuming your are a Christian, can I ask you what kind of a God sends people to hell for not believing in him. That doesn’t sound very Godly to me.
What kind of god supposedly decided it would be a laugh to give me cancer?
Why do you write God gave you cancer? Maybe your poor choices in lifestyle gave you cancer. Maybe the environment you lived in was conducive to getting cancer. Many reasons but God is not to blame.
God doesn’t send people to Hell, he saves people from going there. You choose not to be saved. God is trying to reach you, but you keep rejecting Him.
So the fact that evil exists is proof the God doesn't? Whether you believe or not is your choice but I would hope you would have better knowledge on the subject. Anyone with a minimal understanding of Jewish history and the Old Testament knows that God punished the Jews because they constantly fell away from their faith. It's why Moses and his followers traversed the desert for 40 years, why they were capture by the Babylonians, etc.But a staunch denier probably doesn't have the inclination to learn... it's easier to lash out on those who do believe.
“And when you pray, do not be like the hypocrites, for they love to pray standing in the synagogues and on the street corners to be seen by others.”
So… keep it under your hat. If it works for you, great, but don’t peddle your fish here.
You are not the one who decides what to discuss on this blog. There are a lot of Christians who believe what I believe. Please tone down your hate. We are sharing, we are not demanding another person to do as you say. Peace be with you
I couldn’t care less what you believe, just keep it to yourself. It’s not hate, it’s annoyance .
God bless you sir. You have a good evening.
Well said brother. Fact, ask your doctor if patients who have a faith in God do better than those who don’t. No one said it is actually God doing it but it seems that the ones who do have a much better attitude. I attribute my positive attitude to Jesus Christ so to Him be the glory! God bless.
Amen, there’s lots of studies on those who have a positive outlook who do much better with either treatment, natural or conventional. You and I have seen eye eye most of our post. I believe there’s others that are searching for the truth, and we may shed some light . All glory to Jesus Christ, who strengthens and heals us.
Keep the Faith and never let the nonbelievers get you down. Why did I get prostate cancer? Don't know the answer to that but since getting it I've been much happier generally, I've had a renewal of sorts.
That’s right! Just have a gifted believer lay hands upon you and you will be cured! Give me a freakin break. And, keep your religious beliefs and God off of this site.
This site allows beliefs of God. What makes you believe that you can tell other members that they can’t post about God. You are out of line. Please respect others and their beliefs.
If you would preface your statements about religion and God with the words “I believe” that is fine. Believe whatever you want. But- don’t be sanctimonious in telling us what to believe and that “giving oneself over to God “is the MOST important thing. And, as far as God “saving” those who believe- You mean your all powerful God is SO spiteful he refuses to save those who don’t believe in him. What kind of a God is that? You can keep him. I don’t want him.
Like I said in the beginning, if you don’t like what I say just move on. Get over yourself, you have such hate for God. You are using this platform to pronounce your hatred for God. That doesn’t help anyone. Please stop doing that, this is to help people. I’m trying to help those who believe. Please move on and believe whatever you want.
Remember, Peter denied Christ 3 times before the cock crow. This person is very angry he has cancer so he needs to explain it to himself. What he doesn't realize is if he accepts his condition, his treatments and life would be much better. Maybe one day he'll understand.
I don’t think I accept my condition! What a weird thing to say. I have been living with cancer for more than 11 years. I think I have accepted my condition.
Apparently not.... A lot people live with illness that haven't accepted it. The length of time is meaningless. Francis Collins was once like you, but after working on building the human genome he became a believer. One can chew gum and walk.
So what would it take for me, in your view , to accept my condition?
I’m praying for him.
That's all we can do.
I can’t hate God since I don’t believe he exists. I believe in science and things that can be proven.
You believe science on faith. You read books that someone else wrote and you have faith in that. Wisdom understands that science is an ongoing discovery, it’s mostly theories. The Bible was written from historical scrolls that really exist. They have been proven by scholars. Here’s a fact. God loves you whether you love him or not. He will be there whenever you decide you’re ready. Even if it’s your last breath, he will be there for you. God bless you brother
So- then I am not going to hell for failing to believe in him?
I pray you will know that God loves you and doesn’t want you to go to hell. I’m not going to tell you where you are going for eternity. I just want you to make sure that you’re looking for the truth. God will reveal himself to you when you earnestly search for him.
That's a pretty funny non answer. Basically what you said is god doesnt want you to go to hell but you damn sure will if you don't accept him. That would be the truthful answer from you.
My wife decided to go to hell because according to a christian neighbor that's where her beloved grandmother and other family members are since they didnt believe in a christian god.
According to the Old and New Testament, you are correct. Whether someone goes to hell, well one only finds out upon death. But for those of us who believe, then it's quite likely the outcome. After all, the Ten commandments have been around for centuries and basically lays out God's law for many. But this topic is really not for this site.
There's a podcast titled "The Exorcist Files"with Fr. Carlos Martins. Now this gentleman was an Atheist for a large part of his life.
If you are an inquiring mind and have free time...could be a learning opportunity.
This site isn’t about arguing whether there’s a God or not, it’s about helping people fight cancer. Let’s try to focus on that instead of bashing each other‘s religion. Please move on to a forum that debates religion, that’s not what this forum is.
facebook.com/share/r/Kdsp7g...
Sorry, Mate. I left Facebook in 2016 when I realized it was essentially a political propaganda tool. I haven't missed it, haven't looked back...will never return.
I’ve been on Lupron 2 years, PSA 0.003, T=3. Been on ADT vacation for over a year. PSA now 2.7, target 3.6. I expect to be back on Lupron and something else in the next 90 to 180 days. It took several months for libido to return and my hot flashes slowly went away. My main exercises are pickleball and walking the dog. With my A1c 7.1 I try to limit carbs, but otherwise no special diet. Due to radiation 34 years ago for stage C rectal cancer, my prostate cancer was deemed inoperable.
DON'T MESS WITH SUCCESS....
Alternative therapies (some of which I use myself) are AT BEST an enhancement of medication. There is no convincing evidence (IMO) that any combination of them will be effective alone. With respect to intermittent treatment, there is significant disagreement about when that is advisable, but the shortest time for initial treatment I have seen is 18 mos.
Don’t think you need the IMO proviso……there is no good evidence that holistic treatment can handle cancer( by scientific standards)…..if alternative tx’s make those using them feel they are increasing their chances of survival have at it but to me it is throwing good money away……belief is not proof but for some folks far stronger.
What you ae thinking is termed intermittent ADT, as opposed to continuous ADT. Simply delay ADT until the PSA reaches a planned level. I did that for years, after RT to prostate.
renalandurologynews.com/cme...
I may join you in that protocol. I am thinking 3 month eligard shot in the winter to knock it down and then coast until PSA reaches a planned level like you mentioned. Any notion of what that level might be for you?
My RO seemed to think 4 was the time to start thinking Lupron, and the schedule allowed it to rise to 8-10 before knocking it down to <0.1 with Lupron. I went through that for three times, and then I let PSA get up to 35, in 2020, At that time I resumed Lupron again and it promptly fell to <0.1, and I am now continuous, quarterly, with PSA <0.1, but with some mets, for 3+ years. I would keep PSA under 10, after all that, and use 4 to signal scheduling Lupron.
What you haven't included in your dietary protocol is some sort of phytoestrogen
ADT is aiming to block your testosterone but when it does that it also blocks the estrogen that you produce (from testosterone ) it's this lack of estrogen that seems to cause the most debilitating side effects of ADT ie aching joints cognitive decline etc
So to address this you need to introduce phytoestrogens in your diet or ask your health team for estrogen transdermal patches
Thank you Lizzo. Is there any negative side effects to adding phytoestrogen?
ADT
There is a member in the Philippines that is entirely on estrogen gel I believe. Perhaps he will comment? Recently was back to US for some scans I think.
Most phytoestrogen are too weak for side effects but the phytoestrogen I give my husband instead of ADT which I don't think he could cope with is called Aguaje I use it for menopause it's from Peru but it's not easy to get genuine aguaje it's very potent Someone mentioned estrogen patches I am posting a link below - I think men should be given estrogen patches instead of ADT Estrogen patches can just as easily block testosterone
sciencedirect.com/science/a....
Thank you for sharing this article, it looks promising. Do you personally know anyone who has used Estrogen patches and the long term effects?
They haven't made estrogen patches available even though the trials were successful, some guy posted on here he was being treated with estrogen patches by a private German company It's women that are in danger from too much estrogen - women risk endometrial and breast cancer not men
google.com/search?client=ms...
Thank you Lizzo!
Did you watch the video ?
Please explain
Don't throw out Western Medicine. It is likely why you are were you are at.
I appreciate your reply. My choices gave me cancer when I turned from the healthy diet and lifestyle that God recommended in the Bible. I caused my own disease. So, therefore, since I caused my own disease, I can repent and change my ways to cure it, but only when I fully change my ways, including lifestyle, sin and diet. I would love to talk more on this if you’re interested. If you’re just wanting to bash God because you’re an atheist, I will pray for you.
Give me a break...
You are a couple month's ahead of me on your journey. My PSA only got to 29 and with the supplements I was able to take it to 20 before starting meds and treatments. I take the mushrooms BCQ, chlorophyll and Pectisol modified citrus pectin. My PSA at my 4 month point was ,04. From reading these posts, I see a lot of people have PSA numbers bump up even on treatments so it is an ongoing battle for most. I read about interrupting ADT but it really showed no benefit. (hot flashes etc. still continue with the disruption). I am due for my next set of labs in a week or so and anxious to see the results.
I wish you and every member on this site the very best. I pray for everybody on this site every day. Even if we disagree, we are all brothers and sisters. I care about all of us. Nobody wants to be here. I’m thankful for this blog. It teaches me what to do and what not to do. God bless my MaleCare brothers ☦️
I have been considering surgical castration but am hesitant because it will eliminate any chance of a vacation from adt. My SE’s are mild so my reasons are not because of that but possible to prevent or delay my cancer from becoming non responsive to adt.
Read "Invasion of the Prostate Snatchers" before deciding.
My advice ain't worth spit..... but I have to chime in. "Euell Gibbons."
Good Luck, Good Health and Good Humor.
j-o-h-n
Didn't he die from a ruptured AAA??😬
How about Jim Fixx, (complete book of running) find of a heart attack while running, due to major athesclerosis. 🙄
Correct......... age 64........ didn't live long enough to get Pca.......
Good Luck, Good Health and Good Humor.
j-o-h-n
I will stick with with science and run the course. When this beast is going to get you there isn't much you can do about it. The most recent example I see is Dexter Scott King. A dedicated man of God who had been a Vegan since the '80's. Th e articles I've seen say he had been battling this for many years, I'm going to assume SOC.
For me to think that by changing my diet at 66 will help is foolish IMO.
Too soon for you to stop ADT.
I wasn't knocking it at all. I take lots of supplements to improve the immune system.
Maybe I misunderstood you. You said “Don't throw out Western Medicine. It is likely why you are where you are”.
Yawn…
I understand everyone has a different story. My story is that I was a couple of years with undetectable PSA and castrate sensitive. I had no idea how serious this disease was. I stopped ADT for 9 months and that was it. I am castrate resistant and doing chemo again. Basically fighting for my life. I know it’s rough living life without testosterone but what will be the alternative if you take the gamble.
Is the effectiveness of standard therapy affected by my faith or lack of it? Will the prayers for me by a Christian be more effective than those by a Jew or Muslim? Both the Rife machine and religion require faith, but I would not use either without standard therapy.
I understand. Thanks for sharing your thoughts. We all have different paths that require hours and hours of research. To each of us, it’s a different journey. God bless everyone faced with this reality.
Yea, several months ago I shared my 23 year journey with prostate cancer. Many ripped me because I took no treatment when I could have been cured. A month later a guy shared his 12 year journey. We were both Gleason 3+3. He had RP followed by radiation. We are now at the same place except I had 21 years with no side effects from treatment. It was in God’s hands then and He is in control now. I never asked to be cured, just for wisdom to make the best choices.
It’s guys like you who have inspired me through the Holy Spirit. I will continue on this no treatment journey other than six months of Lupron, which I almost lost a kidney so it was a good decision. I don’t plan to stay on it, I’m contemplating within the next couple months getting off of Lupron. I had to clean out some old sin bitterness, stress and unforgiveness. I’m free from it all thanks and glory be to Jesus. He took my sins on the cross and healed me. By his stripes, he was wounded for our transgressions. God bless you brother ☦️
Believe it or not, patient noncompliance is a big deal, especially when asymptomatic. If you know that our bodies and intrinisic health are gifts from God, you are less likely to take them for granted and believe you know more than God.
My view of God's involvement in my life is that he caused small events that I could have chosen to ignore or not. This very much includes how I came to be diagnosed with APCa. It also very much includes following the SOC arc my doctors are leading me on. Putting things I have no direct ability to control up to God helps me to not be highly stressed-out which is something we are all told is important for PCa patients.
Not preaching, just saying what works for me.
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