I have conventional onco doctors and their meds treatment plan, my daughter is a nurse so one may think, all is good on the advice and treatments . For me I have no positive feelings towards any of it. I walk out of my MO office feeling shipwrecked ( treated like Gilligan or Barney Fife ) . Please don't take this as advise. Strictly my experience viewpt. So where am I , well down to the choices that I would only face now or latter, that is take control of my situation,do constant research find out alt treatments listen and learn from people who have had success treating their own illness. Update, I now have a positive outlook knowing that through prayer and guidence from on high a good outcome is possible. I could get on here and tell all of my protocol and what I am doing and taking, which I would love to share, except more than likely or at the very least, it would not post. A few years back a world wide event took place we all were subjected to, that for me and others pulled back the curtain and started the brush fires in our minds that .... Ok Enough said on that front. Hint, how about a drug that saved so many lives accepted by medical comm who's inventor won nobel prize for it, only to be ...... and only now the story is slowly reverting back to the original truth, that yes it truly is and always was a miracle drug that saves lives and is found to treat many illnesses inlcluding, you guessed it. and yes this as well. Sorry for the rant but it's just as this man thinketh. Please realize how we choose to see things the canyon can seems wide, but for some the choice to take that giant leap to the other side is the only sane thing left when faced with living in an insane world,to which and at this point one can rejoice knowing both feet landed safely. God Bless
My Decision - Self Healing: I have... - Advanced Prostate...
My Decision - Self Healing
Always take control of your treatments. Do your own research and know your options. You cannot just blindly follow the advice of doctors. Many doctors if not ignorant of treatments follow "cookbook medicine."
A man who "does his own research" without relying on 500 years of accumulated medical science has a fool for a doctor.
Do Research science papers and your options . Then present it to your doctors.
Only if you understand levels of evidence, statistics, and only get info from peer-reviewed journals. Can you say you meet those qualifications? For example, do you understand why retrospective studies are hypothesis-generating only? Do you know how to interpret Kaplan-Meier curves? Do you limit your searches to pubmed?
Thanks Allen, Tells me everything I need to know
This may help you do better research:
prostatecancer.news/2022/07...
How about that song by Gnarls Barkly " And when you're out there, without care. Yeah I was out of touch. But it wasn't because I didn't know enough. I just knew too much. Does that make me crazy? " I could sing along to that song " Crazy" all day, lol
Anyone who "blindly" follows a doctor's advice is a fool.
I agree
I agree. Fortunately, all the top doctors practice shared decision making. It puts more responsibility on the patient, and many patients don't like it.
We know what happens to good doctors that go off message , yes top doctors in there field now outcasted for going it alone to defend the facts. The terrain has changed many people are now seeing what they couldn't see before thanks to these individual doctors who went off script and spoke out . While this puts the responsibility on those shared decision doctors placing them in the light of accountability.
Science involves a shared truth by consensus of a community of experts. Science only advances when alternate hypotheses are put forth and tested. It always has, it always will. This process has not changed in 500 years.
Consensus ? Sorry factual evidence based science doesn't need a hundred doctors or a consensus to defend it. It can stand alone as a beacon. But I well understand the origins of consensusus reality Old dogma is slow to change
Science is and always has been truth as adjudicated by a consensus of experts. If you believe your hypothesis can change the truth, you have to convince the experts. They have also agreed upon the kinds of experiments that are convincing. Science is open to anyone who has a new hypothesis - all you have to do is demonstrate via a convincing experiment that your hypothesis is true.
The last few years has shown something much different playing out in system. More and more is coming out , and the data is revealing, This will turn your stated 500yrs on it's head. Investigations into cause of the rise in turbo cancers ...... Let me shut up. Everyone will soon see and know. Trust broken ,non dare deny nor defend .
Please excuse my French and ignorance, but what the hell is your diagnosis that you cured yourself of?
Did I say cured myself, please if I did state the quote . No I did Not But I am cured with the promise of eternity through the salvation of my lord and savior Jesus Christ, Though I walk through the valley of the shadow of death..... but I read my post nowhere did I even mention cured myself, but I did rid myself of what in my opinion is more harm than good for me in terms of health and healing. But you now have my post with the word of life
I apologize for my improperly equating healed to cure. I am glad for you that you have your promise of eternity. I believe in *one and done* and find great comfort in that since I have no desire for an eternity of something.
Peace
Hey no problem we are all going through this , My pca from what my doctor said is treatable only. The term they use NED would be is nice to here at some pt. So for me and my doctor, my flesh at this time treatable , but my soul healed and protected forever by his promise.
The very sad state of today's medical community is that scientists follow the money. If they don't, they are outsiders and become outcasts.
Much is slowly being trickled into the public arena on many fronts, Alternative and private practice will be dominate once again , I think you know what I am referring to when said, all in on it together like a bunch of Charlie Manson groupies. lol
No, most doctors genuinely care about their patients.
I think one should work with the doctor but I am 100% on not following blindly
In 2020, one oncologist could have gotten me killed because he would not listen to me when I told him that the side effects I was experiencing at the time (needing to sleep 2/3 of the day, rapid weight loss and difficulty breathing) were due to Bicalutamide/Casodex after he had upped the dosage to 100mg. He had told me these were not listed as side effect and were probably due to the cancer becoming more aggressive. I told me that I could directly link the beginning of my problems with the increase of dosage. I held my ground and stopped taking Bicalumatide and I got better within 2-3 days and then slowing began putting some weight back on my bones.
And just last month, my latest oncologist wanted to put me back on hormonal therapy just because my PSA was at 0.09 whereas that level is perfectly "normal" for someone that still has a prostate. From my research here and elsewhere, there is no cause for concern until I get a PSA of 2 or higher. So if I had listened to her, instead of enjoying my slowly increasing QoL, I would have returned prematurely to feeling like I am 80 years old instead of 55.
So I repeat, work as a team with your doctor, but be the one who is in control as it is your life and nobody cares about it more than you do.
Best of luck to you.
That is quite a story. You tolerated that MO longer then I would have. I would have fired her long ago. Any doctor that will not listen to you and will not work WITH you is incompetent. I have fired a couple of doctors along the way.
Your on the right path. A PSA of .09 is a great number. Enjoy the recovery.
I am on my fifth MO so I don't know about being as tolerant as you thought I was 
To be fair 2 of them left for personal reasons not related to me.
Well said TA
To each their own.
In 2016 my dad died of advanced prostate cancer. I kew nothing during his illness, researched nothing and trusted the doctors.
He was treated with standard of care at the time ADT as a monotherapy until it failed when he had chemotherapy. When he stopped chemo the cancer took over his liver and he dies.
6 months later I was diagnosed with prostate cancer. I started to research as was shocked to discover the Abiraterone clinical trial results. No one suggested my dad joined the trial or prescribed Abiraterone as it wasn’t standard of care at the time.
I read the stampede trial results. My dad had no radiation to the prostate ( or anywhere) as not standard of care at the time.
if he had been put on the triplet therapy on diagnosis he could still be here, I’ll never know. No-one knows how well Lu-177 could work for some if given as a first line treatment rather than as it current the third.
I trusted the doctors, I let my dad down. There were things available and I was just ignorant.
Don’t be ignorant of what’s in the pipeline, research and advocate for yourself always..
I am 14 months PSA undetectable and my bone scans are healed from multiple mets. I am not cured as there is no known guaranteed cure for advanced prostate cancer.
There are constant developments and improvements been made. My dad would have happily joined the stampede trial but no one mentioned it so ADT monotherapy was what he got.
Keep researching!
That's great news with your undetectable PSA. Did you receive the triplet treatment (and radical prostatectomy ) and what was your PSA at the time of first diagnoses?
I had HIFU at initial diagnosis after a PSA of 3.56 and a Gleason 6 diagnosis.
Turns out it was more aggressive than on paper and I went metastatic with multiple mets
I had triplet plus from that point ( sought and travelled for 3 x early Lu-177 infusions, so I could reduce Docetaxel to 3 infusions.
ADT was degerelix, advanced hormone was Apalutamide. In addition I had 20 Vmat radiation sessions to prostate , 2 brachytherapy ( very controversial) and volunteered for the OVM 200 clinical trial of a vaccine. In addition 3 lots of SBRT ( 2 when I was ogliometastic and 1 post chemo as T9 still showed activity.
So threw the lot at it! Obvs not cured but my choice when PSA was rising rapidly and multiple skeletal mets were appearing.
Sorry to hear the loss of your father, I lossed my father, mother, and then my sister all in a few year time period. The eye opener to the nature of healthcare and also nursing homes, this post will be taken down if I go into detail,yes it was bad. I am devastated, at times I feel like the lost kid in the store , then 2yrs later I find out I have stage4 pc. I do believe prolonged grieving may trigger hidden illness or hastened progression. Non dare call it a conspiracy theory when they become a first hand witness to these horific eye opening experiences in my situation several . Sorry this is more to be about your loss. God Bless
I trusted the doctors, I let my dad down.
If you feel that way it's because you didn't go to medical school and become a M. O. I feel the same way since I didn't major in Corporate Law as my father advised me to do. Coulda, Shoulda Woulda. Our train has left the station years ago.... get over it....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 09/07/2023 5:17 PM DST
Brysonal, you stated " my bone scans are healed from multiple mets", I did not know this was possible, that's good news for me cause I have a body full of them.
I figured they just kept eating away at my bones. is it possible for our bones to become denser?
As I said there is no cure for advanced cancer but it is treatable. My latest PSMA pEt scan does use the term remisssion though.
My medical oncologist won’t use the term remission until 12 months of undetectable PSA. I did that in July and requested a PSMA PET scan to see activity levels.
I had SBRT to T1 and third rib. That resolved them but new ones popped up all over so needed systemic treatment
systemic treatments that I think could have done the job
Early Lu-177 x 3
Early Docetaxel x 3
ADT - Degarelix
ARSI - Apalutamide
Further SBRT to T9
No idea what did what!
No idea how long it will last but feels better than in 2022 with mets popping up everywhere
In addition I had the prostate/ pelvic area irradiated.
Good Luck
I find it incredible when people attack the pharmaceutical, medical and scientific communities so harshly and completely. Collectively, these fields developed aspirin, Tylenol, insulin injections and numerous other types of medicines including cancer treatments that have helped people ease their pain and sometimes cured their illnesses and diseases. Heart, brain and other surgeries do the same. Same goes for joint replacements. I could go on and on. Please STOP attacking these industries so strongly when they have helped SO MANY people for SO MANY years. It’s just plain IGNORANT to do so.
I'm always amazed at this, some people on SOC but who have also changed to a healthy diet and exercise and find their PCa has stabilised or improved attribute the improvements to their new diet and not a mention of the medication and their medical advice. Nothing wrong with eating healthy, I now do it myself, but my cancer needs the "big guns" of modern medical technology and PCa Treatment.
So it was with the attack from within by the medical est and media on a drug invented by William C. Campbell and Satoshi Ōmura winning a nobel prize as a medical break through of our time , only to have the drug go from hero past40yrs to zero recent 3 yr window due to what ? was it taken off the market? On record to date highly effective low toxcity I think lower tox than Tylonol , don't quote me, ck it out. So why a drug to date that has saved so many lives and very safe, be reported as dangerous and one step further claiming only for 4 legged animals. While it is correct to say great work has and is being done in many medical aspects The past does not dictate the present ? But by making changes to the past in the present can dictate the future if we allow it. So did the changed narrative stem from Ignorance or being willfully Ignorant to the facts. We know the drug itself still stands on it own merrit along with it's inventors, despite the false narrative .
What drug are you talking about? I will research it if you provide me the info
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