Holding very low stable usPSA - 0.03X range for six years; no ADT, no chemo.

[NanoMRI]

Eight years ago this month had RP after considerable investigation - nadir 0.050. Eleven months later had salvage RT; done at 0.10. Then after a year of pondering ADT and chemo, when my usPSA was back up to 0.10, I went to Europe for Ferrotran nano-MRI combined with Ga68 PSMA. The nanoMRI lite up suspicious pelvic lymph nodes so had salvage extended pelvic lymph node dissection surgery. Cancer confirmed at the para-aortic nodes. Today, six years hence, holding very low stable usPSA, 0.03X range, no ADT, no chemo. I am taking supplements to (theoretically) get after cancer stem cells and I strive to keep ferritin in the low normal range. All the best to all of us!

[LowT]

any lymph edema from your lymph node surgery?

What was your GS and pathology after prostatectomy ?

[NanoMRI in reply to LowT]

no lymph edema, six years now - note I am otherwise fit and healthy. GS after RP was 4+3, overall path was favorable but with very thin margins.

[jfoesq in reply to LowT]

FYI- I am dealing with this now for 11.5 years. I had my prostate removed along with 36 lymph nodes a few months after diagnosis. I have had lymphedema ever since. It's a minor inconvenience compared to the ADT side effects. I have to cut the elastic top of my socks, otherwise the pressure on my calf is painful/uncomfortable.

[NanoMRI in reply to jfoesq]

11.5 years and still going - I like the sound of this! I do wear compression socks on long drives plugging my RV, especially continuous days, plane trips, and after long hard hikes and bike rides. The elastic tops of mud socks can leave imprints, but they clear quickly after removal. I also watch a bit of TV, with my legs propped up. I don't care much for TV, but a sacrifice I am willing to make to comfortably elevate my legs

[jfoesq in reply to NanoMRI]

I tried compression socks but could but they were way too tight. I could barely get them on and off. Maybe I should try another brand

[rickyfish56]

That's very encouraging! Can you please post your supplement list, it might help some of us on this Journey?

[NanoMRI in reply to rickyfish56]

pubmed.ncbi.nlm.nih.gov/321...

[NanoMRI in reply to rickyfish56]

pubmed.ncbi.nlm.nih.gov/296...

[NanoMRI in reply to rickyfish56]

happy to share articles. As my efforts are doc guided I am hesitant to share dosages, etc.

[Tall_Allen]

I hope it was curative!

[NanoMRI in reply to Tall_Allen]

always the hope, but I was not and am not counting on it, especially with usPSA ticking up from <0.010 to 0.03X range over past six years. This said, I do not see ADT/chemo as curative, so my intent is to delay these for as long a possible, if it comes to needing them (which I ponder with some frequency - as I do not want to give this cancer, any cancer, time and anonymity).

[Steve507 in reply to NanoMRI]

PSA below 0.1 for 5 years some may argue is cured (all else nominal)

[NanoMRI in reply to Steve507]

As shared, my results are below 0.1 and I know better from first hand experiences to not think in terms of cured. Fortunately for me as well, all else nominal.

[Steve507 in reply to NanoMRI]

Agreed! However, one may argue death is the only cure for life ... 😉

[BTFBD]

what supplements are you taking to kill the stem cells how are you keeping your ferritin low

[NanoMRI in reply to BTFBD]

Please note I am just a patient, and although these efforts are outside of general standard clinical practices they are doc guided. I shared two links above in reply to rickyfish56 with supplement details (do these work for you). I find information on what feeds cancer most interesting - and ferritin is included. Several research papers correlate ferritin levels at the top of and above the standard clinical range with metastatic prostate cancer. There is thinking that maintaining lower ferritin levels within the standard range may benefit fighting cancer. My diet was unintentionally very high in iron so I have reduced my over-abundant intake of certain 'healthy foods', and doc guided therapeutic blood draws have a role too. My efforts also include reduced methionine diet to potentially address systemic inflammation. IMO this is an interesting article: ncbi.nlm.nih.gov/pmc/articl...

[Steve507 in reply to NanoMRI]

I can and do eat and drink what I want---in moderation. 5 years on I'm <0.01. The 3 month course of ADT really made my semi annual blood panel results wonky. My X turned the knife asserting I was made be_atch for about 15 months ala night sweats and some weight gain.

Stay Positive, lighten up and Vaya con dios. 🙏... Respectfully!

[SViking]

why do you need to keep ferritin low and how do you accomplish this?

[NanoMRI in reply to SViking]

does my reply to BTFBD answer your questions?

[milehigh in reply to NanoMRI]

Interesting thread. We cook predominately in Cast Iron. As I understand it, Cast Iron cookware increases the amount of nonheme iron in food. Is "nonheme" iron the type you are reducing in your diet?

[NanoMRI in reply to milehigh]

(sarcasm alert) Well, thanks milehigh, now I have to go learn what specifically heme/nonheme iron is, and ya, I do cook with cast iron too (and likely low cost cheap products for campfire cooking). So, I web-searched and oh right I know but forgot the difference I have reduced both. Although I like my meats I came to learn I ate way too much nonheme "healthy foods". IDK but my guess is I got/get very little heme iron from cooking utensils compared to say when I would eat 1 lb of spinach salad full of other high source nonheme veggie foods, many times a week.

[Adendino]

Thanks for sharing the phytochemical supplements you're taking via the pubmed article. I know bio-absorbability is an issue with supplements so patients don't waste $$ by passing them through the body in urine. Have you found a particular product that has good bioavailability or are you taking liposomal supplements?

[NanoMRI in reply to Adendino]

yep, when my urine is colored, and not from deyhdration, I do acknowledge that may be my wasted monies. The internal med doc I see annually for overall health check thinks I am likely wasting my monies - but otherwise no harm. I source both. For example, I cook with turmeric; I liked it before I was diagnosed. My doc that guides me on CSCs has liposomal fav's, but IDK - I read and read and sometimes buy on availability and price. My thinking is I am willing to waste my monies instead of doing nothing, however, I do not think it is all a waste. Many good peoples over the centuries promote this thinking - how can they all be wrong for so long? I do notice if I take sups without meals my urine is discolored whereas with meals not so much so. It seems unlikely we will see trials prove/disprove this thinking in our lifetime. What I can say is I am diligent about taking phytochemicals and for six years my usPSA holds very low stable range, no ADT. I am not willing to stop and risk attempting my own trial.

[janebob99]

Are you familiar with the Artera.ai test? It predicts that 66% of men will not respond to the use of ADT therapy, while 34% will respond to ADT (i.e., have improved survival outcomes). Odds are you're one of the 66% cohort.

Bob

[NanoMRI in reply to janebob99]

Bob, are you saying odds are I am in the 66% that will not respond to ADT? If so, how do you draw this conclusion about me? If in fact 66% of men will not realize a benefit from ADT, this is frightening. Keith

[janebob99 in reply to NanoMRI]

Hi, Keith.

Thank you for your excellent comment.

Here's a slide from their website. The test is FDA approved and Medicare pays for it now. It's based on Level-1 evidence (the best level). They get your biopsy slides, digitize them, and then run the slides (plus your clinical data) through their AI program. They trained the AI on millions of biopsy slides, which is impressive.

Yes, it's scary that 66% of men won't respond to ADT. Your observation is very astute. I hadn't thought of it that way...

The chart on the left shows this (the non-responders). This could explain the high rates of PSA and PCa recurrence after "curative" treatment and ADT.

Artera.ai is working on a similar test to compare short-term ADT (4-6 months) to long-term ADT (18-24 months). But, it hasn't been published yet. That will be very interesting.

I just got my Artera.ai test ordered this week. I'm looking forward to the results. Hopefully, I won't have to do ADT. I am planning on doing high-dose estrogen castration therapy instead of Lupron ADT

artera.ai/arteraai-prostate...

Artera.ai test for ADT effectiveness

[NanoMRI in reply to janebob99]

Please share your results - first hand experiences are more useful IMO. Your post is the first I have heard of Arera.ai. Worthy of investigation! My hesitancy on simply rolling into ADT is that the death rate from this beast is not declining, and the number of men facing castration resistance is rising.

[janebob99 in reply to NanoMRI]

Thanks. Will do. I think they also send a color report showing various risk predictions.

Have you considering doing transdermal estrogen therapy instead of Lupron ADT?

Here's a chart comparing the pros/cons of TDE to Lupron.

Bob

Estrogen Pros/Cons

[NanoMRI in reply to janebob99]

not familiar with transdermal estrogen therapy - I shall do some reading. Thanks!

[janebob99 in reply to NanoMRI]

Send me your email in a private chat, and I will email you the best papers on transdermal Estrogen patch/gel therapy, if you like.