After ADT has stopped working, what are the options?

[davenj]

Anyone know the possible courses of action after PSA starts rising? Thanks.

[ctarleton]

The question might be easier to comment upon if you can provide some details as to your prior treatments, drugs, and PSA trend history, to date.

[Magnus1964]

Which ADT drugs have you been on so far? There are a lot of ADT drugs. Each has a different approach to Pca. When one fails, move on to another.

[GP24]

Let me outline a possible route:

usually your MO will recommend adding Zytiga or Xtandi to Lupron when you become castration resistant. Usually Zytiga is used. If that fails, you should start with a chemo using Docetaxel. After that, when you had Zytiga before, you can try Xtandi. If that fails you will get a second chemo with Docetaxel. Then you may give Erleada a try. After that you can get a chemo with Cabazitaxel. Following that you can try Zytiga again or maybe Darolutamide. You can add drugs for bone health along this route.

As I said, this is an example. The correct sequence is unknown. Your MO will probably have a different opinion.

I would try to get into the VISION trial after the first chemo to get a treatment with Lu177.

With all these new drugs some patients live longer being castration resistant than before while having Lupron.

[Tall_Allen]

Which ADT has stopped working? Are you detectably metastatic?

[Hidden]

I have had success with a simple combination of low dose Xtandi (1 capsule a week for a long time) with Vit C via IV. Now 21 months and counting. Low cost, low side effects. I suggest you avoid chemo while there are other less damaging options available. I am glad I am one of the 50% that have survived 20 months after chemo (but only just - I was nearly one of those who did not survive Round 1 of the chemo). If you have not stopped doing what caused your cancer, that is also a good place to start along with a raw veg and smoothie diet. The better your immune system, the longer you will live and the less medicine you need. Chemo will almost destroy your immune system for a long time, and that could leave you far worse off if it did not work. Good luck with your battles!

[Hirsch in reply to Hidden]

Glad you are doing well. I doubt there is any therapeutic effect from the one capsule

[Hidden in reply to Hirsch]

Of course there isn't! But the Xtandi somehow potentiates the Vit C by a factor of about 3 (dose dependent) - and that moves Vit C back into a worthwhile killing zone. Vit C on its own fades in effect over time (like everything else), but the combo puts new life into it. With nothing else out there (other than our immune systems and radiation) that actually kills cancer cells, this can be a fast life-saver. Try it and see if it buys you a lot of time too. Its harmless if it does not work for you. Given a choice between that and Chemo, there is no contest.

[Hirsch in reply to Hidden]

Agree

[Hidden in reply to Hidden]

Link?

[Hidden in reply to Hidden]

Link to what??

[Hidden in reply to Hidden]

Xtandi potentiating IV-C. I do IV-C and also Zytiga. Zytiga is similar to Xtandi but not as many side effects. If I can look into the action of Xtandi and IV-C interaction I can probably tell if Zytiga also potentiate IV-C.

Thanks!

[Hidden in reply to Hidden]

Since the Zytiga blocks production of Testosterone, and Extandi blocks the uptake of testosterone (the 2 ends of the same problem), you may find the Zytiga works better.

The Vit C - Xtandi mechanism has nothing to do with the blocking - as such - it is an unknown mechanism where the cancer cells get somehow weakened by the Xtandi (even 1 capsule a week before the IV) and the Vit C kills many more of them. I time the IV to about 8 hours after the Xtandi, when it reaches peak blood concentration.

That said, if you take more and more Xtandi, the blocking action comes into play as well. So full dose Xtandi (4 per day) works much better than 1 a week, and does give a better Vit C kill as well. If you can afford it - and live with the side effects as well (actually this would be going into overkill and a waste of money on a regular basis). But 4 per week does not seem work better than 2 a week (before the IV) - it is in fact better to spread them out to one a day rather than all at once. More experiments needed.

[Hidden in reply to Hidden]

I'm an experimenter also. I monitor more things than I can name and always try to verify everything I am doing.

May I ask what experiments you are doing? I do IV-C 2x/week and would love to increase the effectiveness. I verified that 100g of C gives me a therapeutic dose. If you would like check my blog for details: prostatecancer.health.blog

I take prooxidant doses of melatonin and EGCG prior to IV-C and follow with hyperthermia (I target internal body temp of 102 degrees F).

[Hidden in reply to Hidden]

Wow - you certainly are breaking new ground with your experiments! They are so successful you have no means to measure how well you are doing (a PSA <0.01). You are taking 8 times as much Vit C as I do. OK - let's stand back and take a more distant view of what is going on:

I think the RP was a mistake, as your body would have killed all the cancer in the prostate by now anyway. I see zero need for a RP if the immune system is working and the PSA can be driven low for a time. Good move to not have radiation - you have proved that would not have achieved anything (except damage).

You have done the right thing to avoid "falling into the well" - ADT, radiation, and Chemo. These 3 things make an `escape' almost impossible, as the body usually gets progressively more trashed and the immune system never gets strong enough to take over the fight.

I think you may still be in a position to "escape" as you are not permanently damaged as yet. But to "escape", you need to get your body back to as near to 100% working order as possible.

You are on the right track diet-wise, but I would suggest go as raw as possible (this builds up the gut biome better than anything else but takes time). You are wrong to limit fruit "because of the sugar". Raw fruit eaten steadily through the day (like 8 smoothies) will hardly budge the blood sugar as the raw fruit (and other foods) contains its own enzymes to digest it properly and quickly. If you heat the fruit, then these enzymes are lost and the fruit sugars are converted into the poisonous variety - it becomes "Cancer Growth Medium". I think Metformin "works" because it reduces sugar spikes, not because it kills the cancer (more testing needed).

Most of the things you are doing are not harmful as such, but I do think you are way into "over-kill" territory. General fitness is the name of the game to get that immune system working - it has to do nearly all the killing of the cancer cells even with the help of Vit C killing them too.

Casodex (bicalutamide) - This needs to get off your list as quickly as possible - it wipes out about 30% of the gut biome that needs months to recover. Thus counter-productive.

Estrogen - This is certainly less damaging than ADT (Lupron), and perhaps ease off over 6 months or so. PSA numbers under 1 are not a problem. I think that Testosterone is not the main culprit, and in time the total clobbering of T levels will go out of fashion. I think the "false" androgens are the real problem - the kinds made by belly fat and eaten by the bucket load in our food and water. Your line of experiments may contribute here.

Zytiga - you need to find a way to stop this too, as it also stops the production of a dozen or so "good" chemicals - and the adjunct Prednisone only (badly) replaces 1 of them. The effect is to progressively weaken the whole body, gut biome, and immune system until it simply stops working because the negatives outweigh the positives. I have no experience with low-dose Zytiga, but others have had some success.

To summarise: With about half your gut biome killed off, that means a 30% reduction in your immune system. A 70% immune system is not good enough to "go it alone". Because of your semi-trashed gut biome, you need to get back the 5,000 odd species that have been killed by the Zytiga, Casodex and Metformin (and probably too much Vit C as well). It will take months of easing off these poisons as your body recovers. Fecal transplants at the end of this process can be helpful.

Your numbers should allow you to work towards (and test run) a low dose Xtandi (say 1 capsule a day at the start and cut back as you can), and cut the Vit C to 50 grams per week. With some luck, you would ease off to just 25 grams of Vit C per week and keep up the raw diet and healthy lifestyle. THIS is the route to permanent remission (and in fact used by many enlightened doctors around the world).

Good hunting!

[Hidden in reply to Hidden]

Awesome summary! Thanks. I'll look into the xtandi/IV-C.

I stopped the casodex about a month ago. I stopped estrogen over 2 months ago. I started very high testosterone about a month ago (bio-available is now over 400 ng/dl and I think should go higher). I'm targeting bio-available testosterone at 750 ng/dl. Libido of course is crazy now and I'm packing on muscle and losing fat very rapidly. Went up 3 shirt sizes in last month. Fat wasn't high before but is only 11% now. I'm monitoring BP. RBC, PR, and lipids. So far they are fine. Do you know of any other metrics I should be looking at?

I just had my PSA and CEA measured last week and PSA is still zero. CEA is really low and dropped since last test but I'm not sure of the accuracy of the test. I only have 3 data points to work with.

As you say, I'm way into overkill. But I want to kill the cancer. If it takes a hammer, fine. If it takes a scalpel, the hammer should kill it :). I love exercising and have exercised for hours every week and eaten a vegetarian type of a diet for decades (in actuality it is flexetarian).

I plan to continue the zytiga for one more year. If my PSA is still zero I'll reduce the zytiga dose to maybe 250 mg qd.

A lot of my food is raw. I just got done with 17 ounces of carrot/spinach shake, 17 ounces of apples, and 5 ounces of oranges... I misspoke: I meant to say that I am limiting my intake of simple fruit from smoothies. I monitor my glucose (CGM and also two glucometers) and smoothies do cause a spike in blood sugar. Not a large or long spike but still. I typically consume about 40 or 50 ounces a day of raw fruit and veggies. My metabolism has always been high so not a problem eating that much (I eat lots of grains and legumes and corn and even a little whey protein). I usually get between 4000 and 5000 calories a day and could easily go to 6000 or more. I try to fast a few days a month. Last one was a week ago - on the testosterone I didn't lose any lean weight but fat loss was over 1% in 2 days.

I also take lots of probiotics daily. And kombucha. I've been trying to get my immune system healthy and active. My WBC was less than 3 but now are 5. 3 is really low. 5 is lower than I'd like but at least better for now. I'm going to get them higher but it's slow going and lot's of trial and error.

The RP was possibly a mistake in a way. But prior to the RP I didn't have insight into how serious my cancer was. So I wasn't doing anything to take it out. RP results were a wake-up call for me. On balance my health markers are much better than they every have been. Speaking of RP, I have almost no incontinence now except when I do heavy weights in the gym. I haven't worn pads for months. Before surgery I got up 4 times a night to urinate. Now it's 0-2.

One of my friends doesn't have cancer but has BPH and, after talking to me, he wants an RP. Yeah, I'm talking him out of it. There are other options.

I like the all mortality decrease stats of Metformin but think, as do you, that the effects are likely from blood sugar control. Therefore probably not as applicable to me. But since I'm not sure, I'm going to continue it.

If my PSA is zero and my CEA is low in a year I'm going to reduce the IV-C to 1x/week. Seems to me that I was either incredibly lucky after my RP, or the surgeon wasn't 100% correct, or he got 100% of the cancer during surgery, or the IV-C took care of things. I'll also reduce the testosterone and target bio-available test at 500. I'm also going to reduce some of my supplements. Some I'll keep though. We all have cancer. I want to do what I can so that cancer doesn't get me. And some of them are great for cardio health. Cardio issues get a lot of us.

I'm going to add some of your info about raw diets/gut biome to my blog. And hopefully in a year I'll make a blog about general health instead of just a cancer blog.

Cheers!

[podsart in reply to Hidden]

Are you a former dr Myers patient; he used low dose xtandi after the cancer was under control- I am one of those : 3 pills per week; supplements?

How high is your testosterone?

Who is your dr? How did I get to the use vitamin C iv?

Can u share your Gleason and PSA history?

Sorry for all the questions but never found another person who was using the low dose xtandi protocol

[Hidden in reply to podsart]

I got into Xtandi plus Vit C because I was on my back with not much time (after 4 rounds of chemo). I started with 4 capsules per day, but had reduced that to 1 a day because I could not afford to by another box. That then became 1 a week (the night before the IV) to keep that box going some more! It dropped my PSA by 95% in 4 weeks, and I was "undetectable" <0.1 for 8 months after that. It has been up and down with a net climb from there - partly because I keep experimenting a month at a time with dosages to find the minimum cost. The last experiment I pressed my luck too far and it went up to 2.75 from 1.28. I have just got another box of Xtandi, so I am doing a daily dose of 2 capsules for a couple of weeks to get that number down again, and do a 50 gram Vit C after 2 weeks as well (instead of 25 gms). I had to see my Onco for the first time in 14 months to get the Xtandi script, so he is not part of the equation.

Sorry - I regard Testosterone levels and Gleason scores as totally irrelevant to the daily battle. All my original mets have healed, and so has my prostate and lymph nodes. I had radiation only to a rotten femur. The change in PSA (I started at 572) is all we need to tell us where we are going. T & G scores will not change treatment options, which are always "trial and error" to see what works.

I try to eat as much "raw" as possible. Zero sugar. Zero wheat. Semi-raw oats (not the 3-minute kind) for breakfast, which gets "hot" with black pepper, heaped teaspoon turmeric powder, cinnamon, teaspoon raw ginger root, cranberries, sunflower seeds, a banana. Range of vits - C 1000mg, B12, D3 (3000iu), potassium (to counter all the sodium in the IV's), dolomite, zinc, selenium (180ug), chromium, cod liver oil, medical mushroom extracts (2 caps). I take Jalra to make sure I do not get any blood sugar spikes, even though my sugar numbers are normal (I consider even a small 20-minute spike enough time for the cancer to have babies!). For snacks I eat an orange. Lunch is lettuce, tomato, avocado, cheese, rye bread if hungry. My base is still Lupron every 3 months, but I want to see if I can go the estrogen patch route - if I can get my PSA down around 0.2. I feel the Lupron (4 years now) is a big drag on my immune system, and I am losing the battle to keep muscle mass and stamina. Xtandi daily also has problems of balance, numbness in fingers and toes, accelerated macular degeneration and cataracts, and it kills about 20% of the gut biome which does not recover if there are no gaps (and thus weakens the immune system so counter-productive here).

But we have obviously started something - there is a whole new world out there of less harmful partial doses and combinations that work better together. And a whole lot cheaper!

[podsart in reply to Hidden]

Thanks-looks like you have thought this through

[TheWizardofWesley]

One Capsule of Xtandi a WEEK! Wow.. I would love to be there... I started with four daily. then Two.. now for the last month one a day.... Just had a PSA blood draw yesterday, to see it I am still holding around 0.13 If I am I might ask if I can start one every other day... Thank you for the heads up on dosage. Stay Healthy and Stay blessed...

[Hidden in reply to TheWizardofWesley]

Please do not forget that as you drop the Xandi dose the T-blocking mechanism gets weaker, and in a Vit C combo the Vit C drip has to do more of the work. I agree with your basic idea - I don't think enough trials have been done to find the minimum Xtandi that works. Perhaps Astelas found the maximum dosage that could be tolerated ... and that dosage got cast in concrete? My Onco (I no longer ask him what to do) had a fit when he found out I needed some more because I was coming to the end of the box I got from him in May last year! Astelas in fact know what I am doing because I have told them, and keep them updated. No action or interest there as yet. I am hoping for part boxes so I do not have to save up for many months to get more than I need (had a good bet on the stock market that paid for this one). Or get a big old age discount of some sort so I can retire one day. Good luck to you and thanks for the input!

[TheWizardofWesley in reply to Hidden]

Thank you sir for the input, Thank G-d my prescription coverage , covers it all with no out of pocket costs. but I would still like to take less of it and hopefully feel stronger or closer to who I was before I started in Aug. 2018. Why a VitC IV ? and who administers that? How many units of VitC are needed to keep a proper balance.

Wishing you continued success in your journey..

[Hidden in reply to TheWizardofWesley]

Vit C is relatively cheap compared to cancer meds, but it is all a balancing act and a lot of maths is needed to keep in budget and get the `best deal' and keep that PSA down low. It is also harmless to humans - but kills cancer cells. The only other tool we have that kills cancer cells is radiation - expensive and bad side effects. There may be other things that may also kill cancer, but the evidence is difficult to find. Usual meds only slow the cancer growth, but people like to believe it `kills' the cancer. They still have to realise (because few doctors mention this) it is the immune system that does all the killing (and all the meds reduce the immune system, so the less the better). For me (and many around the world - it is a Western thing to poo-poo Vit C for obvious financial reasons) the Vit C adds to the natural kill and improves quality of life by also reducing inflammation and pain. I just happened to discover that adding Xtandi to Vit C can triple the kill rate (this can be calculated from PSA numbers - which measures the kill). I actually use 25 grams sodium ascorbate in 400mls 0.9% saline. Or double in 800ml (if I want to get around a 30% kill). I have a nurse who comes to my home once a week to put the needle in. If I had extra hands, I would do it myself! The bottom line for me is that I would have died 21 months ago without this combo (Vit C on its own could not kill enough to overcome explosive growth after 4 rounds of Docetaxel).

[Hidden]

For me it was Erleada that was added to the ADT.

[j-o-h-n]

Ok... we know you're being held prisoner in New Jersey but Would you let us know your age, PSA and Gleason numbers, Location, Treatment location(s), Treatments to date, Doctor's name(s)? All info is voluntary but it helps us help you and helps us too. Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/08/2019 7:49 PM DST

[davenj]

Thanks. I am asking for a friend so don't know any of this information other than the following: a scan shows a single bone met and PSA is rising rapidly.