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Posted 5/31/2019 8:07 PM (GMT 0)
Fairwind:

Agree with you on why there's virtually no trials. Now that it has been shown to recharge sensitivity to Enzalutamide
perhaps that will spark an interest.
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DIY BAT. Whoa! I don't know what his caregiver would think but I assume he knows. Can't hide testosterone.

I am given 400mg Testosterone Cypionate, scheduled for every 28 days.

My Testosterone nadir the day before second injection was 80. Right before third it was 120. Dr. said wait six weeks for next one
Posted 6/1/2019 7:09 PM (GMT 0)

ANB said...
For at least two years prior to diagnosis I was tired.

You've said something here that really hit home to me. During the two years between my first and second biopsy, I was a physical and emotional mess. Irritability, emotional volatility and lability, despondency, and weepiness. I knew something was wrong but was unable to get medical help.

I had later asked here (on HW) if anyone else had noticed emotional changes before their diagnoses and no one said they had experienced anything like that. Turns out I was depressed. I now believe that if *anything* out of all the stuff that went wrong had gone otherwise that I probably would have been okay.

ANB said...
I didn't realize just how fogged out my brain was on ADT. BAT didn't "give" me energy; it put me back in a state more akin to where I was before this mess started. I didn't feel "great"; I felt normal.

That must be wonderful. What I'd give to just feel "normal" again. It's great that you were able to pursue this option. Good luck to you going forward.
Posted 6/1/2019 11:18 PM (GMT 0)
Reply to RobLee

The number times I was at a fork and ended up going the wrong way boggles one's mind. How about the noted Urologist I went to with a PSA of 85 and he told me he thought it was prostatitis and didn't send me for a biopsy? And many many more, some of which I blame on myself for being stupid.

I do my best to say to myself: You can't change any of that. It happened. Look forward. AND fight like hell. You are where you are. You play the hand you're dealt -- so deal.

You have to FIGHT. The correlation between positive attitude and longevity has been shown.

Clinical depression, as opposed to feeling "depressed", must be dealt with. For me it was Prozac that did it, though that was many years before this.

Concerning emotional changes, I did not feel any until my diagnosis. I noticed going on ADT did have some emotional impact. I felt I had gotten in touch with my "feminine side". I cried -- something I'd only done about twice in the last forty years. And other subtle feelings that are hard to describe. I actually found it interesting. It was the testosterone. I can see it now.

With other cancers if you come in at advanced stage 4, as I did, you're dead really soon and you won't feel very well for the few months you may get. We at least have a chance to make the most of what we have.

I realize keeping the upbeat attitude is wonderful advice, but no one can do it all the time. It's aspirational. If I can do it 80-90% of the time I'm doing real well. I think I'll take a big emotional hit when I go castrate resistant.
Posted 7/15/2019 2:25 AM (GMT 0)
ANB reporting in re BAT.

Have had four treatments so far and am ready for #5. Depends on where my testosterone lands -- if it's not under 100 they'll delay.

However many years I have left I think this one will rank the as best in "how do you feel?" I generally minute-by-minute just feel better. I'm doing the same workout as I've been doing for two years, except the amount of weight I can push keeps increasing. I've gained some real muscular strength -- important when you're older.

My libido returned. That actually worked out pretty well with the assistance of Dr. Doron Stembler.

PSA creeping up. 0.5 last time [that's up from undetectable]. I'm not sure that's a bad thing.

I've been reading a lot about "Mathematical Oncology", designing treatment strategies based on mathematical models.

I can sum it up in one word -- EVOLUTION. There's a Community of cells living in our metastases. We've beaten the heck out of them, but some survived. We know they mutate like crazy. So now I gather we wait around for castrate resistance? I can not accept that that will be the right answer.

One Academic Paper noted that Evolution is cited in only approximately 1% of medical Journal Articles dealing with prostate cancer treatment.

Each cancer cell within a metastasis is competing with other cells for resources, including space. Premise is: You already have castrate resistant cells, they're just a very small % and are being out competed by the castrate sensitive cells. Maintaining the resistance machinery draws a considerable amount of cell energy, so they are less fit for survival than castrate sensitive cells.

Eventually, if you really hammer the med until failure you've eliminated virtually all the sensitive cells and the resistant ones have a party.

Game Theory is a well developed area of mathematics and this situation falls into the category of "Leader/Follower Game" (also known as "Stackelberg Game" in case you wanted to sound really in-the-know). Leader is rational. Follower is not.

Game Theory says Leader has the advantage. Follower is constantly having to adjust to whatever the leader changed. Leader has the initiative. Also, the Leader knows what's happening next; the cancer doesn't. Once that cancer goes resistant it's the Leader and you're in reactive mode.

So, I don't know how long I'll be on BAT. Nor do I know yet whether there is radiographic response. Next week I get a Ga PMSA PET next week. If PMSA positive I'll go to Heidelberg for at least one Lu-177 treatment

All this boils down in my view: Try not to take a med until it fails. Treat Cancer as a chronic disease.
Posted 7/15/2019 11:13 AM (GMT 0)
Entertaining spin on several topics and some novel theory as well. Intermittent leuprolide chemo programs were developed exactly with the purpose of retaining PCa sensitivity to testosterone and they appear to do that, until the cancer cells further mutate.

I discussed bipolar treatment with my onco, he suggested that would be tantamount to pouring gasoline on a fire. I agree, based on the science.

Its gotta feel great to have the testosterone levels of youth again, especially after having your hypothalamus and pituitary shut off for so long. Throw in that guaranteed 15% placebo effect and no wonder you are flying high!

Best of luck. smile
Posted 7/15/2019 4:42 PM (GMT 0)
Oncologists have been taught since birth that testosterone is like pouring gasoline on a fire..But in the case of those who have become hormone refractory, that is simply not true..But getting them to write a script for BAT is almost impossible outside a clinical trial.
Posted 7/15/2019 4:51 PM (GMT 0)
To trailguy. To be clear, these are not my theories . They represent a synopsis of a number of Articles, most notably by Robert Gatenby, head of the Moffitt Center. For more recent material, See, for example Zhang, Integrating evolutionary dynamics into treatment of metastatic castrate-resistant prostate cancer (2017) and the recent follow up in JCO appearing this year: Integrating evolutionary dynamics into treatment of metastatic castrate-resistant prostate cancer (mCRPC): Updated analysis of the adaptive abiraterone (abi) study (NCT02415621).

Your onc says it's throwing gasoline on the fire and you agree "based on science". That's not the results of Phase II Trials they have done. How much does he know about BAT or, as I suspect, is it knee jerk "it makes no sense since cancer eats testosterone"?

Also, have a little respect for Evolution. It's a powerful theory.

If evolution applies in what way is it currently taken into account in determining treatment?

"Nothing in Biology Makes Sense Except in the Light of Evolution" is a 1973 essay by the evolutionary biologist Theodosius Dobzhansky. What other explanation is there for the cancer constantly mutating around treatments? The cells that can survive go on to thrive.

We know these treatments will fail, we just don't know when. Pushing a medication to failure when you know you're not going to achieve a "kill" is simply making sure that you have killed every cell within the range of the med and cleared the way for the mutants that you've essentially been breeding.

Only 1% of Articles even mention Evolution. 'Mathematical Oncology" is now part of the science. Moffitt employs nine mathematicians. There has also been an explosion of Articles starting 2017 of Articles on Mathematical Oncology.

Concerning opinions on BAT and "science": I know Castrate Sensitive cells eat testosterone. One could extrapolate from that you're throwing gas on a fire. Extrapolation is dangerous. Is there any other basis for your and your onc's conclusions?
Posted 7/15/2019 7:07 PM (GMT 0)
I came across two very interesting threads on BAT back in 2016

I. "Testosterone to TREAT prostate cancer - are they crazy? No - it just may work." (mCRPC)

https://www.healingwell.com/community/default.aspx?f=35&m=3695949

Trailguy: you'll appreciate the first sentence, which begins "It's like throwing gasoline on a fire!"

II. Also see Bipolar Androgen Therapy: Anyone with experience? Information? Thoughts?
https://www.healingwell.com/community/default.aspx?f=35&m=3708926
Posted 8/2/2019 2:45 AM (GMT 0)
ANB here. Last note I was getting ready for shot #5. Hasn't happened. At the start of this therapy my PSA was undetectable. At the scheduled shot date my testosterone was 198 (they don't like it over 100) and PSA was 0.7. Two weeks later T = 45 BUT PSA = 1.2 !

So, for now, we're waiting for PSA to come down.
********************
"Nothing in Biology Makes Sense Except in the Light of Evolution"
Posted 8/2/2019 5:10 PM (GMT 0)
Follow-up, continued.

After shot #3 I had testosterone checked weekly. Shots scheduled every 28 days. PSA peaked around three weeks at 0.7 and dropped to 0.5 by time for Shot #4.

Fyi; Testosterone level after week 1 was 1491. That's four or five times what would be normal for someone in their late 60's. It's about 50% higher than when you went through puberty.

Fyi: I did feel a bit better after shot #1 but it takes a bit to really kick in and recover from the ADT. After shot # 3 I was feeling great. The biggest thing was my brain. The fog of ADT lifted. I hadn't realized how bad it had been (I'd been on over two years).

My mind was sharp again. I felt "normal". Maintained same weight workout but the weights were increasing and I've put on noticeable muscle mass.

Getting ready for shot #5 and T = 198 PSA = 0.7. Need to wait for T to go under 100. Ten days after scheduled shot T = 45 but PSA = 1.2 ! That concerned me (and more importantly my oncologist). So, we're waiting for PSA to come down.

The ADT side effects are back. My brain is a foggy mess. You can tell me something and five minutes later I'll remember you told me something but I can't remember what it was. My response time in conversation is slow. It seems to take around 5 seconds before I respond in conversation because I'm having trouble getting my thoughts together.

I told my ONC that I'm willing to ride this out a while watching PSA. I'm doing my "bucket list" in November with a National Geographic Around the World in 24 days Tour. I want to feel well for that.

Also, my ONC took me off Abiraterone, which reduces residual testosterone from the adrenals. He said there was a "negative feedback loop", meaning that with all the testosterone around the adrenals would stop producing testosterone on their own. "If that's the case why are you keeping me on Lupron?", Answer: Lupron tells your brain to tell your testes not to produce testosterone; it's not affected by the presence of T.

Abiraterone took my PSA nadir from 0.7 to undetectable. Wondering if I should go back on for a month. I'm a big fan of the idea of changing up treatments to keep the cancer in reactive mode. I have always thought the practice of giving one med until failure could not be the right answer. Clinical trials are starting to validate that theory.

Having said all that, I'm grateful to be alive.
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Posted 8/2/2019 6:30 PM (GMT 0)

It would be great if BAT would "shell shock" the system, and then a fellow could potentially reintroduce former medications that were wearing off ...

That's the hope!

If new things were never tried, then we would just be left with old results, looking forward ...

There's a quote I like that says, "If you want the story to change, you have to turn the page."

Thanks for updating us!
CYCLONE ~ Iowa State University
Posted 8/7/2019 1:06 AM (GMT 0)
The reason BAT has not become part of the "Standard Of Care" , an accepted everyday treatment is there is NO MONEY IN IT !! Nobody is going to pay for a big multi-center trial when there is no pot of gold at the end..
Posted 1/20/2020 5:50 PM (GMT 0)
Here's my Closing Report on my BAT Therapy.

I started about 26 months after diagnosis, ADT (nadir = 0.7) and five months on abiraterone (PSA = undetectable). Had four shots to start. You don't feel much after the first, but after three or four WOW!!!!!!

Shots every four weeks. PSA after shot #1 = 0.2; Shot #2 = 0.3; shot #3 = 0.5. I had had some interim tests after shots 2 and 3 and noticed that the PSA actually peaked at three weeks then came down to the numbers above. Shot #4 Four weeks = 0.7. My T was a little high, so we waited a week. PSA = 0.9. Not good. One week after that 1.2. At that point my ONC bailed out.

After several months my PSA went down to 0.15, which I thought was pretty good since I hadn't been on Abiraterone since the start of BAT (ONC says no point because "negative feedback loop" initiated by T would stop peripheral production of T) and my PSA was lower than my pre-Abiraterone nadir of 0.7.

I lobbied hard to start again because I was going on a rather ambitious National Geographic Around the World Tour and didn't want fatigue. He agree to give me two shots, no more. So I had shot #1 four weeks before the trip, planning on getting shot #2 day before. PROBLEM: Four weeks after shot #1 my PSA was 2.9 !! So, no second shot.

Seven weeks later PSA = 1.35. My guess is that my PSA continued to rise and then started to come down (as noted above, the trend had been to go up and then down). That last test was five weeks ago. I'll get retested shortly and I hope it's coming down.

So, unfortunately, it appears BAT is not for me.

Though this is my "Closing Report" I'll check back in with info on where my PSA lands. If it goes way back down I'll consider BAT a success just based on QOL. Also, I am still castrate sensitive -- meaning we haven't killed all all the sensitive cells yet, so they were likely the ones growing, not the castrate resistant ones. If PSA comes down I'll consider (speculate) that BAT didn't hurt me and may have helped. After doing much reading, including "Integrating Evolutionary Dynamics into the Treatment of PC" I believe it's important to keep changing the environment the cancer is in. The only thing the cancer can do is adapt to whatever it's current environment is. If you keep hammering the castrate sensitive cells, what do you have left. It's a prescription for breeding castrate resistant cells. Note, you don't just "go resistant"? The resistant cells are already there. However, they are outcompeted by the sensitive cells since the resistant ones incur significant metabolic cost in maintaining resistance.

Changing the environment before resistance is supported by Game Theory. The ONC is the "Leader" -- (s)he has the power to change the environment. The cancer is the "Follower" -- it can't anticipate change; it can only adapt. Game Theory has mathematically proved that the Leader has the advantage. Once the PC goes resistant it's the Leader and the ONC is reacting.

This is evolution my friends. And that's how PC goes resistant -- it mutates to survive in whatever it's environment is. I've told my ONC that I do not want to take any med until failure. If I asked you to breed resistant cells a reasonable approach would be to kill all the sensitive ones, which is what current treatment does.

Cheers and Happy New Decade
Posted 1/20/2020 6:13 PM (GMT 0)
Interesting stuff ANB. Thanks for documenting your experience.
Posted 1/20/2020 10:56 PM (GMT 0)
Very interesting update. Not to hijack the thread but how was your trip?
Posted 1/21/2020 4:03 AM (GMT 0)
Amazing, but tiring. It takes a lot of travel to get around the world. But it was on big bucket list: Machu Picchu, Easter Island, Marrakesh, Cambodia, Tibet, Petra, the Serengeti. Wish I could post pictures.

As I designated my last message as "Closing Report" I feel free to digress.
Posted 12/14/2020 3:16 AM (GMT 0)
I've started a sequel report Dec. 2020. A lot of interesting stuff has happened post- BAT. Ultimately went castrate resistant. Took Enzalutamide for 24 days and my PSA went from 2.0 to 0.2. Then I went off per Gatenby and Zhang's evolutionary dynamics article. They said: wait for your PSA to go back to 2.0 and then restart Enzo. PSA drifted up to 1.6 but then headed down. 1.1 and four weeks after that 0.9. That's 12/2020. I do not understand why PSA is going down, but I like it.

The key point is that I was on Enzo for 24 days and now off for 4 months. That's a lot of crummy side effects and didn't have and four months when my cancer hasn't been adapting to Enzo.

Now PSA is going down. I've never heard of anyone who was castrate resistant reverting to sensitive, but the only thing I'm on is Lupron.

I started a new thread 12/20 right after the 0.9 reading. I'll keep you all posted on developments. Most interesting.
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