An Update on my SBRT given with ADT experiment... so far....so good...

[NPfisherman]

Greetings FPC members,

Prior to treatment, I raised the question of when should SBRT be given with ADT in this post:

healthunlocked.com/fight-pr...

Information from the K9 Wonder led me to try SBRT prior to ADT, which was the opposite of what I did previously. At the time I did my SBRT at UPMC with Dr Burton, I estimated my PSA to be about 1.3 or a bit higher... I started SBRT on June 17th, but prior to that, I took a shot of Eligard on June 15th for the benefit of the "testosterone flare" as per the study the Great K9 gave me... I had 2 more session of SBRT on the 20th and 22nd and started back on abiraterone with prednisone on the 23rd...

Since then, the hot flashes returned and I had my first f/u PSA at the local hospital on 7/8--3 weeks later... and my PSA was <.06 or undetectable by the hospital standards... I will be going back to LabCorp for labs I ordered through Life Extension, and I am hopeful that my PSA will be undetectable on those also...

As I said in the title....so far....so good... If everything goes well, then my MO talks of stopping treatment again in a year... I think this will be the new standard for MDT for oligometastatic patients.. By doing this, it allows the body time to recover from treatment and prevents the resistance that comes from repeated exposure to the drugs. It also may allow, as per the "Gaming Theory", for non drug resistant PCa to regrow which can then be treated again at a later date.

I welcome all comments....

Don Pescado

[siouxbee19]

Great news, thanks for sharing your experience, it certainly helps to have different perspectives! May it continue to be so far, so good! <3

[NPfisherman in reply to siouxbee19]

Thank you for your support and reply... I think this is how other members on these forums can benefit... By looking at how others are getting their PCa treated and seeing what works and what doesn't.... Raising questions... following developments....providing information... I salute MateoBeach who went and is providing updates on his trial participation in Australia as well as all trial participants whether national, international, or n=1 . Information is POWER !!! More information, please...

The Science is Coming !!!

Fish

[siouxbee19 in reply to NPfisherman]

Amen! to all of the above!

🕊️

[6357axbz in reply to siouxbee19]

How do you reply to fish? He’s in a different community that is no lingered monitored

[siouxbee19 in reply to 6357axbz]

I just clicked on the "reply" button.

[6357axbz in reply to siouxbee19]

Ok, seems to be working now

[6357axbz]

My MO, highly respected at MD Anderson and currently at Houston Methodist seems to be heading in the same direction for my treatment.

[NPfisherman in reply to 6357axbz]

I think there is a lot of communication between the MO's at leading facilities, and they are doing treatment plans with patients and sharing success stories... I go to Cleveland Clinic, but my buddy goes to Dana Farber and sees Dr Sweeney... He had SBRT to one lesion and 14 months of ADT plus abiraterone/prednisone.... He has been on vacation for 4 years .. People that are oligometastatic need to realize that there are options...Thanks for the reply...

Fish

[NPfisherman in reply to 6357axbz]

I believe JamesAtlanta is also still on vacation after a similar treatment plan and that vacation is over 3 years I believe...

Fish

[MateoBeach]

Very good plan and execution Fish. Put the androgen flare on your side for SBRT and reap the benefits. Shows that timing is very important too. Good early response and best hopes going forward. Always thinking about the next step mindful of adaptive treatment sequencing.

[NPfisherman in reply to MateoBeach]

Indeed, a man with a plan is on the road to success....Keeping sequencing in mind always... Some of the gaming theory studies are showing that the therapeutic use of drugs can be stretched out by not using drugs continuously... I know some noted posters do not believe in MDT or gaming theory but the results speak in volume to the opposite of that belief...

Fish

[MateoBeach in reply to NPfisherman]

The opposite theorem is provably false. All treatments that are maintained continuously at maximum tolerated doses fail. That is the status quo of all of our current PC treatments and why APC is considered incurable.

Picture a war against vast hordes of an enemy. You go into battle with one particular strategy and have some limited success. Great. So you decide to repeat that same strategy every day. Foolishness to think the enemy will not adapt and make that strategy ineffectual.

In this case they have a myriad of cancer cells (billions) testing every possible alternative strategies through random accumulated mutations. They will find a pathway to resistance. And those will survive and become predominant. Unless the treatment can be changed up and a different selective pressure applied. Change up the battle plan before failure. And then change it up again. The devil is in the details of course. Pablo

[NPfisherman in reply to MateoBeach]

I have read one poster state ad nauseam that SOC is the only way , and people should stay on ADT and only take a vacation if it becomes intolerable... The reality is that the treatment milieu is evolving rapidly and as 6357axbz stated that his MO is following a plan similar to my MO... In oligometastatic disease, treat with SBRT and if PSA is undetectable for a year, then a break is indicated... if I get a break in a year, then a trial of T gel along with daily dutasteride and exemastane about twice a week is the plan...

Fish

[MateoBeach in reply to NPfisherman]

That is quite reasonable and forward thinking, Fish. However the dutasteride with testosterone might be putting on the brakes with the PC suppression effects of SPT. DHT May be important for the double strand DNA breaks from high T. So dutasteride might impair the benefits of high T. Uncertain but should be considered. I choose not to use it while on high T cycles.

[NPfisherman in reply to MateoBeach]

Thanks....with your BAT experience and knowledge base regarding T usage, I shall follow your advice......maybe T gel initially and then a switch to dutasteride and exemastane.... my last vacation was 22 months....I want a longer vacation....

Fish

[6357axbz in reply to NPfisherman]

“I want a longer vacation” ....Oh yes…sounds good fish! 🙂

[MateoBeach in reply to NPfisherman]

Interesting, Great Fisherman. So if I understand you are considering cyclic alteration of SPT with a T Gel, and then hormonal blockade with dutasteride and an aromatase inhibitor? What would be the cycle duration? Dutasteride has an extremely long elimination half life so hangs around for months. And I still can’t resolve whether or not it is counter effective to SPT effects. (Seems to be.)And estradiol / estrogens present their own complex mystery around E1 and E2b receptor activity. Seems they are favorable in APC, until they are not and begin stimulating AR receptors through some mutations.

So I agree, the best strategies appear to need to keep changing things up and not continuing to failure. Will be happy to cook some fish and pair wines, fancy or camp style. P

[NPfisherman in reply to MateoBeach]

Pablo aka MB,

I used dutasteride when my T levels started to rise last vacations as my DHT started upward fast. I am aware of the long half life with Dutasteride so I did not take it every day, (but maybe I should have) because of the long half life of about 5 weeks, so I still had the long half life but at a lower medication level/ steady state. Should have gotten on exemestane when my estrogen levels started to rise..We have a friend who used daily dutasteride with exemestane 2-3x a week and he continues on vacation after about 4 years. As students of Friedman, we should consider the situation and discuss possible alternatives...

Dangerous D

[cujoe]

Dangerous Dave,

Sorry I missed your call earlier today. Good to hear you seem to be an N=1 proof of concept. Add up enough n=1s and you can begin to challenge the treatment status quo. I'm prepping for two appointments tomorrow and will give a more thoughtful reply when I get back tomorrow night - or later.

Last night, I also ordered labs via LEF before their July sale ended. I was happy to find that the lab orders are good for 6 months. Their prices are usually MUCH below walk-ins ordered directly with Labcorp.

Got to run for the showers. Catch you later. In the meantime, go catch us some fish, Dude.

Ciao - Captain K9

[NPfisherman in reply to cujoe]

Sounds good....I called to catch up on where you are at with your plan... maybe touch base in the evening if you like by phone...

Fish

[cujoe in reply to NPfisherman]

Longer vacations ~ every PCa patient's idea of a "Real" vacation. In your case, add in some fishing, and now we are talking about the real deal. Sort of a Muir Trail to the nearest river, stream, pond, or ocean. Big fish, little fish, or no fish. It doesn't much matter when you are doing something that you really like to do.

Super glad you have gotten your "good response". The treatment plan is well-conceived and the fact that your MO is on-board confirms it. (I've recently discovered that mine is also embracing my role in contributing/directing treatment options. Partners in crimes against cancer is my way of thinking about it.)

As for my update. I got a repeat super-response to the Lupron (PSA = <0.04 & T =8) and have stopped after 2 monthly injections. That puts me in "test mode" for a second durable response. We all know there are no guarantees when it comes to outwitting cancer, but I should have a first durability reading when I return for labs on 01 Sept. In the meantime, I ordered the men's hormone panel via LEF to get a benchmark read on where my hormones are at the midpoint between last shot and Sept appointment. The PSA will not be a ultra-sensitive, but since my PSA tends to run up rapidly when it decides to do so, I expect the standard lab will be an early indicator of any "durable response" failure.

Equally important, I did a chest CT scan this week and the reading indicated that the lung nodule uptake area, when matched to CT done in 2017, indicated a benign condition. The rib uptake was not mentioned, so either it didn't show up or was outside of the CT scan field. All this seems to support the problem of false positives with Plarify PSMA scans - which leads to undue concerns and additional scans (and cumulative radiation exposure) to verify/eliminate. I'm thinking the Plarify may not be the best of the PSMA lot.

In summary, we are both back on good tracks to keep our PCa from getting the upper hand. Stick around long enough and maybe your Science will come up with that "silver bullet" we all keep hearing about. Hope springs eternal - as long as the eternal does not arrive before the cure.

Keep it Safe & Well - Ciao, Capt'n K9

[NPfisherman in reply to cujoe]

K9 Always Wonder Sometimes Terror,

Great news on the lung results. Solid idea getting some hormonal readings as a guide/ benchmark. As you are aware, our amigo to the North has done a great job of controlling hormonal levels resulting in an exceptional vacation.

Great lab results....Hoping that "test mode" lasts a long, long time. Perhaps, your own n=1 should be considered. I will be discussing some more with Pablo not Picasso, but maybe an artist in his own right... about optimal Hormone control.... I used dutasteride to control DHT last time, but did not use exemestane.... I should have monitored hormones more and drank less. Oh well....

The Ever Dangerous One

[GreenStreet]

Interesting approach. Glad to see that the first results for you have been good. Thanks for sharing and best wishes for the rest of the treatment. I like the idea of avoiding resistance 👍

[NPfisherman in reply to GreenStreet]

Avoiding resistance is the key to survival with PCa. Thanks for the well wishes. Science will get there one day and the war will be over.... Hoping for sooner rather than later...

Fish