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Posted 12/12/2020 3:17 AM (GMT 0)
I refer to https://www.healingwell.com/community/default.aspx?f=35&m=4077120#gsc.tab=0

This is my thread from Oct. 2018 through Jan. 2020 reporting on my BAT experience.

Short summary: I was on abiraterone and my PSA had been undetectable for four months, i.e. I had not hit failure yet, This is important.

I started BAT (March 2019) and per my ONC's instructions stopped the Abi. PSA after shots 1-4: 0.2; 0.3; 0.5; 1.2. BAT then discontinued. PSA dropped to around 0.3 and I was going on an Around the world Trip and wanted to feel well. I lobbied my doctors hard and they reluctantly agreed to give me two more shots, making clear that this was not therapeutic, but rather an accommodation and they clearly communicated "don't ask us again". After first shot PSA spiked to 2.9, so there was no second shot. This is around Oct. 2019.

My PSA was going down slowly. I missed a scheduled Lupron shot (COVID) and my PSA started going up. Went in and got shot. BANG: Castrate resistant. June 2020. PSA max = 2.0

Now it gets REALLY INTERESTING

Following the Adaptive Therapy advanced by Gatenby and Zhang, described in my earlier post, I went on Enzalutamide for 24 days. My PSA dropped 90% to 0.2. This was a bit remarkable because: 1. Abi and Enzo are cross-resistant; 2. There are trials of abi until failure followed by BAT to "resensitize" and then 3. Enzo. They've gotten some results but nothing like 90% in 3-1/2 weeks.

I went off Enzo and was instructed to watch my PSA and resume Enzo when it went back to 2.0. PSA was slowly rising and I was up to 1.6. Figured I'd soon be back on Enzo. BUT next PSA reading is 1.1?!! My PSA is not supposed to go down! It's been going up consistently on Lupron. I'm castrate resistant. I didn't celebrate; I figured it was either general PSA fluctuation or lab error. One month later [12/7/20] my PSA was 0.9. I don't understand but I like it. I even got retested two days later and it was 0.9.

I don't know what's going on. Have I reverted from resistant to sensitive? That would be great but I've never heard of that happening. I do know this. I was on Enzo for 3-1/2 weeks and now have been off for almost four months. That's 4 months of not feeling side effects and, more important, 4 months in which the cancer does not start adapting to Enzo and therefore it's likely I be effective longer than if I had been on continuously.

So, bottom line: I had been on Abi and gotten considerable benefit but did not go resistant. Then BAT then Enzo. Then 90% reduction in 3-1/2 weeks. That alone was somewhat unusual, but I figured this demonstrated what I have been arguing for some time -- dosing to failure is a flawed strategy and counter to fundamental principles of Evolution. [If you want to breed resistant cells a good strategy is to kill everything that is not resistant.]

OK, so far pretty amazing and quite superior to the trials that did Abi until failure/Bat/Enzo. I'm castrate resistant so when I go off Abi my PSA slowly goes to 1.6. To be expected. Then it goes down to 1.1 and a month later 0.9 ?!!!
This is not supposed to happen. This could be significant. Did I reverse from resistant to sensitive?? I have no idea and never heard of that happening. The coming months will reveal more.

To my knowledge there is no data on Abi (but not until failure)/ BAT/Enzo, except what I have given here.

I am not IN a Clinical Trial. I AM a Clinical Trial. n = 1. Hardest thing is to find cooperating Dr's

So, to those Dr's who say BAT is like throwing gasoline on fire: Can you explain this?
Posted 12/12/2020 6:19 PM (GMT 0)
Excellent. It would have been nice to add your signature so we could remember your history.
Posted 12/12/2020 11:31 PM (GMT 0)
Link in OP:

https://www.healingwell.com/community/default.aspx?f=35&m=4077120#gsc.tab=0
Posted 12/14/2020 3:17 AM (GMT 0)
signature attached (hopefully)
Posted 12/14/2020 5:55 PM (GMT 0)
ANB,
Interesting. Is your MO onboard? How often do you test PSA?
Posted 12/18/2020 11:02 AM (GMT 0)

Your case is,very interesting, for those of us who have been on ADT shots ~~~ past, present, or ongoing.

It's an important angle for the future or treatments --- finding ways to "push the reset button" ---- allowing past treatments or medications to work, once again.

You have shared insightful details of your experience here, and I will look forward to future updates.

Here's to health, hope, and happiness in the NEW YEAR to follow ~~~
CYCLONE ~~~ # Iowa State University
Posted 12/18/2020 7:45 PM (GMT 0)
You are lucky you were able to find an MO who would prescribe and administer BAT therapy...I never could find one in Denver...
Posted 12/18/2020 8:26 PM (GMT 0)
Two recent papers:

Bipolar androgen therapy in prostate cancer: Current evidences and future perspectives (2020, Review, Full Text)

Strategies for Testosterone Therapy in Men with Metastatic Prostate Cancer in Clinical Practice: Introducing Modified Bipolar Androgen Therapy (2020 Full Text) Author is A. Morganthaler -- paper is in first issue of a new journal

Djin
Posted 12/28/2020 4:38 AM (GMT 0)
QUICK UPDATE FOLKs
Got my next PSA reading -- 0.7, meaning still going down even though all I'm on is Lupron.

My arrangement with my MO is this: He's responsible for overall supervision of my care. I do not undertake any treatment without him first knowing about it and approving. By and large he adhere to Standard Medical Practice. However, he has always approved any treatment I proposed.

BAT was not easy at all. No one in NY does it. At my MOs suggestion I consulted Emmanuel Antonarakis at Johns Hopkins. He spoke with me for 80 minutes and I assume he ascertained that I had done exensive reading and was aware of the risks. He agreed to coordinate with any physician in NY who would be willing to do it. I hd alreay seen a young brilliant up and coming ONC who, with Antonarakis on board and consulting agreed to administer. I've furnished a detailed account in other posts.

This, I think, worked out very well. I had been on Abi for around 7 mos. and my PSA was undetectable for four. According to Gatenby and Zhang, whose writings impress me, you do not want to kill ALL the sensitive cells. What you're doing is breeding resistant cells as they are the only ones who survive the continuous onslaught. So, he recommended the on/off Enzo routine and my MO approved. It took a bit of time but my PSA was consistently rising and all of a sudden it started dropping. 1.6 to 1.1 to 0.9 to 0.7. When I am in a period where things are changing I get my PSA tested every 2-4 weeks so I can see the trend. This may have helped, because I caught the turn to castrate resistant very quicky. Nonetheless my PSA was rising for some time while on Lupron. And after 24 days on enzo it started rising again conistently for almost three months and then turned around.

I don't know what's going on but I like it.

It takes an awful lot of time and effort to get these "out of the box" treatments, and that's not including the extensive reading I have had to do to be able to demonstrate that I am a knowlegeable patient who understands the risks.

I'm coming up on four years since beginning of treatment. My PSA was over 200. There was cancer all through my prostate and I had a number of metastases, including distant ones which indicate the cancer has really moved aggressively. I was advanced State IV. The only thing i had goingfor me was responding to lupron, but we all know that doesn't last. Had my Annual Physical a couple of months a go and my Physician looked at me and said "you look really good. Has it been four years?"

As part of keeping a positive attitude I have made up "Save the Date" cards for my 75th birthday party -- in 2027. Odds are small I'll make it -- that would be 11 year survival with a death sentence diagnosis. I hope I'll be here posting when it happens. Long shot, but stay positive. Take a active role in your treatment.

Merry Chistmas and well wishes for a New Year (and many more) to all of you.
Posted 12/28/2020 4:06 PM (GMT 0)
I love the save the date. Many of us Stage 4 guys would love to attend. You are doing great. Best wishes for continued good news throughout 2021!
Posted 12/29/2020 12:31 AM (GMT 0)
After a bone scan determined metastases I went for my first PET Scan. Tech asked why I was having it. I told her and she looked at me seriously and said "you have to fight." It made an impression.

I give my invite to any onclogist I see and say "I hope you can make it. I plan on being there."

I have a T Shirt with a Churchill quote: "If you're going through hell, keep going" I happened to be wearing it when I saw a radiation oncologist and he enthusistically pointed to it and said "it's guys like you who make it. Keep that attitude."

I've never been much for ringtones but I did download the intro to Elton John's "I'm Still Standing."

One of my close friends said "Stoykie Mujic". This comes from a scene in "Bridge of Spies" starring Tom Hanks. The picture received six academy award nominations but only won one, Mark Rylance for Best Supporting Actor. Here is a scene just under two minutes which is all Rylance and leads to Stoykie Mujic, Russian for Standing Man. Excellent scene. Well worth two minutes.
https://www.youtube.com/watch?v=rRSIPvuYwOY
Posted 12/29/2020 2:48 AM (GMT 0)
You are on a roll. Don't stop. Email me a save the date.
Posted 2/2/2021 4:31 PM (GMT 0)
Go Bucks: How do I get your e mail address? Happy to forward invite to you as requested
Posted 2/3/2021 9:15 PM (GMT 0)
Just click my name/icon.
Posted 12/11/2021 1:57 AM (GMT 0)
Good work! I was diagnosed in 2018. Given 3 months prior to hospitalization. I decided to do estrogen-based ADT. Did that for 6 months and added bicalutamide for the last month (coming off of estrogen). Followed it up with high testosterone (SPT) for 2 years - 400 mg of cypionate a week. I recently started a custom BAT program. I'm very interested in staving off resistance. I'm using Zytiga during the low T phases. As soon as I get my hands on Xtandi I'll use it instead.
Posted 12/11/2021 4:03 PM (GMT 0)
MORE BAT AND THOUGHTS ON AVOIDING RESISTANCE
In one month I'll be at five year point after Dx of Advance Stage IV PC. In June my PSA was 0.6 after intermittent application of Enza [PSA goes up -- go on it; PSA goes down -- go off it; PSA goes up . . . ]

I was cleared for two BAT treatments. After first month PSA was 4.9. I asked if I should get the second and was advised to. End of month 2 PSA=14. PSA then went down slowly but conisistently over several months to 6.4. Then in two weeks it popped to over 10. PLUS I was feeling noticeably fatigued that reminded me of how I felt prior to my initial diagnosis. I was certain the cancer was growing. I was right.

Had a PMSA scan yesterday. Good news: no new mets. Bad news: One met was raging [and PMSA was so accurate it found activity in old mets that we thought were non-avid].

Now, it's starting to get interesting: I started Olaparib [I am BRCA 2+] yesterday after the scan. Woke up this morning and felt noticeably less tired. It's entirely possible Olaparib stopped the progression in its tracks. We'll know in a couple of weeks when I get a PSA.

Now, was this round of BAT good or bad? I don't know. Obviously could be bad. OTOH: you can only kill the cancer when it's in mitosis. So, perhaps revving it up then slamming it was good -- or maybe not. No way to know.

My approach is that cancer always adapts to its current circumstances but can't anticipate change in circumstances. The ONC has the ability to change the circumstances. Accordingly I think you should get out of a med some time before resistance. At this point the only med I'm resistant to is the ADT, which is to be expected.

I was on Abi for 7 months and my PSA was undetectable for 4. Then I went off Abi and did four rounds of BAT. My PSA peaked at 1.2. Then I was just on ADT and went resistant, but caught it right away with PSA max = 2.0. ONC was going to restart Abi but I asked for Enza. Worked spectacularly. 24 days and PSA - 0.2. I was then advised to stop Enza but restart when PSA went over 2.0 again. That took seven months! Then 12 days of Enza and it was 0.6 [advice I received was to not let it go below 1.0 because you want to preserve the non-resistant cells). Stayed there a bit and then I did the BAT described above.

I observe that they are doing trials now where people who have gone resistant are given BAT to prime the androgen receptors so that PC responds to Enza (which is normally cross-resistant with Abi). They're getting so-so results -- nothing like I got.

The above analysis is not original. It is adapted from the writings of Robert Gatenby and Jinsong Zhang, e.g. Applying Evolutionary Dynamics to Treatment of mCRPC.

My motto is "I don't necessarily want to be in a Clinical Trial -- I AM a Clinical Trial". The science is way ahead of practice, so all these decisions are crap shoots. I prefer to avail myself of new meds and protocols knowing full well it might backfire. Of course, you need a cooperating ONC and that has not been easy.

If you know you're not going to kill it why do you keep hammering it? When the PSA goes down for a while back off the med. All the med is doing is killing everything that's not resistant. PSA goes up then go back on. Iterate. Then get out before you go resistant.

FYI: I am concerned about bone marrow damage with Olaprib. I'm planning on staying on it maybe two months and then going back to Enza. One critical difference between Ola and Enza is that Ola kills cancer cells; Enza drives them into senescence. So, I figure let's kill some of them before putting them to sleep.

It will be interesting when I go back on Enza to see if it's still as effective. I've only been on it a total of 36 days so I don't see how it would have developed resistance. Then again, cancer works in mysterious ways; nothing is guaranteed.
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