My original thread got very messy. I lost track of all the comments so I’m posting a new one to let you all know the great news I had yesterday.
To all the nay sayers, bullies and know it alls. Yesterday I got the best news I’ve had in 18 months. My PSA came down from 100 to 3.9 in 30 days. I’m sure someone here will find a way to rain on my parade. The attached chart is my updated PSA, including today. Today I had my second Lupron injection after 30 days of Casodex and Lupron. I got on my knees and thanked God for the naturopathic protocol and some conventional medicine. Thank you to all the prostate cancer fighters who have been kind and supportive. We need kindness and open minded conversations about all the science, not just one size fits all attitude. God bless each and every person searching for answers.
Written by
RealtorDude
To view profiles and participate in discussions please or .
PSA was reduced for about 6 months, whether patients took Casodex or Xtandi. However, afterwards, PSA was eventually 61% lower for those patients who took Casodex and the death rate was a third greater (Figure 1A).
The vertical axis of 1B is designated as: "Percent without PSA Progression" and it is lower than that of Enzalutamide. Now, how this can be understood as: "PSA was eventually 61% lower for those patients who took Casodex", is just beyond and above my pay grade!
Also, interesting to note that curves 1B and 1C (designated as: "Percent without Clinical Progression") are almost identical. Well, if "PSA is not cancer" what are all these clinicians monitoring? Gout perhaps?
Finally, this: "... death rate was a third greater (Figure 1A)" is what in my country refer to as: "Better rich and healthy than poor and ill" when we want to denote the indisputably obvious. Since, more people of the standard care group had PSA progression it is not surprising that more among them died earlier.
Figure 1 from the paper that TA claimed supporting his persistent ideas
(1) Figure 1B is clearly labelled "PSA Proggression- Free Survival." After the first 6 months, patients who took Casodex suffered PSA progression more than patients who took enzalutamide (the PSA progression-free survival is always less. What is so hard to understand?
(2) PSA is only a biomarker - it gives no insight into what is biologically occurring. My point is that it went down initially for both groups. Someone ignorant of how it is used in cklinical trials might think that all is good. But the Kaplan-Myer curve shows that the benefit is only apparent and it is short-lived.
(3) Yes, taking Casodex rather than enzalutamide caused death sooner. It certainly follows from enhanced PSA progression from Casodex.
1) The article defines the PSA progression-free survival as: "The secondary end point of PSA progression-free survival was measured as the interval from randomization to the earliest event of PSA progression according to the criteria of the Prostate Cancer Working Group 2 (a confirmed relative increase in the PSA level from the nadir value by ≥25% and by ≥2 ng per milliliter)". How on earth this relates to: "PSA was eventually 61% lower for those patients who took Casodex", there is NO PSA COMPARESSION between the 2 groups, you just made it up!
2) You are making assumptions not based on the reference that you presented. If you had written: "PSA is non cancer IMO", I wouldn't bother responding. But, you threw a non-relevant reference, hoping that no one will read it and react. Sorry, we are not all the sheep you think we are. Users will ultimately judge who is right and who is wrong.
1) LOL! I didn't make up anything -- you are ignorant of the meaning of hazard ratios. The hazard ratio is 0.39. That means that PSA for the Casodex group was 61% lower (1-0.39)
2)I am only reporting what you would understand, if you understood the study.
Agreed. You might want to correct your ignorance of Kaplan-Meier curves and hazard ratios as a start. Also, you may wish to understand what Prostate Specific Antigen is. All of these things are learnable, and I don't mind taking the time to explain them. We were all born ignorant. It helps if you have some humility about it.
You are very welcome to teach me whatever you think I am ignoring. And I, in order to show you my gratitude, will reciprocate by teaching you that PSA measured in ng/ml shall not be confused with PSA progresion-free survival measured in weeks.
I agree that you may need to refresh yourself re the meaning of some of the statistical jargon.
Also not mentioned by anyone here so far were the worse SEs experienced by the enzalutamide group. There is, as is common, a tradeoff between efficacy and SEs. Some patients might decide to be the optimist and select the higher efficacy treatment, while others might be optimistic that monotherapy will do just as well for them and decide on monotherapy with fewer SEs? 80% vs 72% is not a HUGE difference to some patients...to others it is.
So, you assess that fabricating an absurd theory about the (inverse to reality) relation of PSA to cancer cause mortality (i.e. lower PSA results to more deaths) using as proof a graph of PSA progression-free survival, (which in essence says the exact opposite, i.e. the more vulnerable Bicalutamide/1st gen group saw their PSA rising earlier compared to that of the Enzelutamide group), is a matter pertaining to statistical jurgon. Well, I rest my case...
A good point about SE. This is the primary initial driver for many who choose a treatment path. Of course enzalutamide is superior to casodex, but it has much worse side effects. Waiting to take the better drugs with worse side effects until the others fail is the question here. Trading longevity for quality of life on the front end is crazy or smart, depending on one’s view.
On one hand way too much emphasis on overall survival in modern medicine. On the other, plenty of regret down the line for some who wish they hadn’t ignored SOC and rolled the dice early.
I for one can say the SEs of enzultamide were 10 fold to what I now have on Zytiga. And the decision to stop the enzu.. was QOL decision. No way I could have kept working on enzu.. and I would have needed anti-depressants.
From what I read this is way above my pay grade too. I minored in math but I don't comprehend how PSA progression in weeks is the same as PSA reduction. Perhaps imaginary math? I took a few courses in imaginary math but obviously I didn't go far enough. I never finished my doctorate.
I do agree on the issue of PSA not being cancer. That concept is within my pay grade. And I can easily understand, explain, and give simple examples of how PSA might not ever show progression yet still be higher (and have a much higher nadir) than a PSA data stream that shows progression at points in time (even given PSA at T0 is identical).
Well, from what is on the net, PSA going down 90% in 1 month with ADT is good news. In your case, you got it down to 3.9, way below 10.0. That is good news. You got the right med team giving you the right med. Forget about the trial etc. They are not for us layman. It only adds to the confusion and anxiety.
Dont mind me. I am just another layman trying to make some sense of the whole thing.
Thank you anony2020. We are all created with some intelligence. Those of us who use it don’t need a human God to tell us we’re ignorant for thinking for ourselves.
I dont need to get involved in the debate. Not that it is worth it. I am not qualified medically to read the reports. However, I did have high school statistics. So here's my take.
1. The reports sample population is what? 1500? Well, the best clinics treat 2000, 3000 or more a year. There is a big difference in accuracy and extrapolation.
2. The trials go on for cost or other reasons for 2,3 4 years? The clinics treat the same cases for decades. There is another big difference statistically.
3. Lastly but not least, the trials cut off at PSA 0.5. They take you off the trial and put another on. Your medical team is dedicated to drive it down to level where they consider it is safe, 0.2 or 01. Their observation, backed by studies is there is a big difference in outcome between <0.2 and over. Much less the difference between 0.1 and 05.
So who is the wiser? Those with sample size of over 1000, shorter duration, and less medication, and those with bigger sample, may be as much as double or more, much longer duration and better medication?
Dont mind me. I am just another layman trying to make some sense out of the whole thing?😊
I don’t know who is right or who is wrong and really don’t care. If your PSA drops, you feel good about things, your scan(s) show no progression or anything new, be happy, and live life. Screw the rest or the worry alone will drag you down.
Thank God it’s not a matter of who’s right or wrong, it’s about sharing our journey and helping others. Let each decide for themselves knowing there are risks on every decision. Include God in every decision and you will have the best outcome for you.
The thing of it is, if you had not gone 100% naturopathic and took advantage of curative therapies out of the gate, you may not have found yourself on an advanced prostate cancer discussion board at all.
That is the saddest part. Nobody wants anyone to have these past and future problems.
But you are here, and sharing your optimism on the short duration of your current treatment. I am glad you are feeling well and optimistic and I hope it continues for a long time.
Just realize always that you are a sample of exactly 1.
I say this as a guy who followed all the “rules” yet somehow has PCa in my lungs after surgery and radiation. I too am a sample of exactly 1.
Thank for your response and I hope you will continue to learn and find the best treatment for you. Yes we are just 1. But 1 can learn from 1 and then there will be 2! 🙏
Excellent outcome! Stay the course and your PSA May become undetectable soon (for an indefinite time). Instead of adding cassodex or abiraterone, you and your MO might look at darolutamide or apalutamide (more tolerable alternative to enzalutamide) - that’s the path I chose. And went one step further to a monotherapy of darolutamide (no lupron/anti-androgen) which eliminated virtually all side effects of no Testosterone from the Lupron except body hair loss. (Also a trial of n=1 🙂). Don’t imagine you’ve experienced the SEs of Lupron yet, but you likely will soon.
No idea whether new healthy lifestyle and naturopathic protocols are helping with PCa treatment directly, but ABSOLUTELY helping with everything else that goes on in your body. Your weight loss alone is evidence of that. Kudos for taking that step too and hope you keep it up!
PS - Sorry your threads keep getting hijacked by folks who want to fight with each other on here . . .🙄
TJS-1 I appreciate you sharing you experience. This is what this forum is all about. Sharing what works and what doesn’t. We will all face that next decision of “what now?” I’ve watched a lot of men on this forum win some battles and lose some. I’m thankful for today. No regrets from the past and no promises for the future. Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
First off, great news. My psa was 5664 5/20/22 and went down to 278 in 21 days on lupron and casodex. It continued down to 6 and 3 months ago started to rise so I start abiraterone next week. I noticed someone mentioned you used naturopathic. No medical advice here, only my experience. I take curcumin daily. I have read posts by other guys who take it to reduce side effects of adt. After 15 months on 2800 mg a day my side effects are minimal. Belly fat and a very few very mild hot flashes. Glucose, lipids and bp holding. Please don’t take my word for it, research it. Also check magnesium supplementation and statin use by men on adt. My cancer had spread to my lungs, lymph nodes, and bones. I had two compression fractures of the spine and was in pain and needed crutches for 8 months. Scans 2 weeks ago showed cancer resolved in lungs as well as several of the bones but still some uptake at spots. Lymph nodes were all drastically reduced in size. I wish you the best. Stay positive and stay far away from those who hinder that.
God bless you Professorgary. You are right as to staying positive. I have the Holy Spirit working in me and sounds like you do too. God told Paul, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. I’m praying for you Professor!
The main problem with him is that he doesn't listen. This is to be unticipated for all elderly people. Human brain is used partly for mental processing and partly for storage of past experiences. When a baby is born it is almost 100% processing and 0% storage. As the years add-up storage space expands at the expense of contracting processing. Combine this with biological degrading, like Testosterone decline for men, which fuels brain cells, brain damages, like strokes that may pass unnoticed, and you end up with a person on the auto-pilot. On every occasion will search in his/her brain storage for a case that has similarities and that's it. Whatever you try to tell him/her will be completely in vain. His/her brain has locked-up for good.
Thank God for free speech, for the moment. That’s why I’m here, to help and be helped. We are not statistics nor an average. We’re not victims, we contributed to our disease, we can change the outcome if we change our behavior. A positive mindset is extremely helpful. A relationship with God is vital.
Dr. Gill Leederman in NYC is a drop dead expert in treating cancers. He uses no chemotherapy or vitamins or herbs and challenges all the big hospitals in NYC to produce the data and results he gets. 80% success rate and he has the data too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.