I have received several inquiries about the early results from my experimental treatments with the alternative Lu177 radioligand, J591, in Perth. See my previous posts about the treatments which took place on May 13th and 27th.
(Duplicated from a post on APC for my friends here on FPC)
As previously reported, the only side effects noticed were moderate fatigue for about 7-10 days and quite inconvenient diarrhea for the same period caused by the gradual excretion of the Lu-J591 in the stool. That and jet-lag from flying back from Perth.
As suggested by Dr. Nat Lenzo, I had stayed on my high testosterone treatment cycle for an extra four weeks until 2 weeks after the 2nd dose. This was to stimulate more activity in the cancer cells to maximize effects of the radioligand. So I was on my High-T (modified BAT) cycle for 12 weeks total (T-Cyp 400mg every 2 weeks). But the last 2 weeks switched to testosterone gel, 100mg/day for faster clearance. And I started Orgovyx daily for a 4 week castrate-testosterone cycle. I note this worked well, as I started having hot flushes and went to zero libido about 4 days after stopping the T-gel.
I was on a wonderful 3 week motorcycle and RV camping adventure in British Columbia with my wife and dog until yesterday. So yesterday is when I got labs tested. I was also surprised that, when I rode my motorcycle through the border crossing from Canada a few days ago, that I still set off their radiation detector, just as I had at SFO airport on return from Perth. This is over a month after the last dose. So the Lu-J591 still seems to be present and working to some degree. Much more persistent than Pluvicto (Lu-PSMA-617).
My PSA yesterday was 0.057. Down from 0.149 pre-treatment. This reflects a month of ADT as well as the Lu treatments. So interpretation is still preliminary. But overall it is good, certainly. And I am not showing any adverse response to the high testosterone cycles so far. Total testosterone on Orgovyx was 17.8 with 0.1 free T.
Marrow toxicity is the main concern from Lu-J591 and some degree is expected. My response seems very mild. WBCs low at 3.2, with absolute lymphocytes pretty low at 0.6. But neutrophils OK at 2.1. Platelets low at 89 k. RBCs 3.87, HGB 13.7 and HCT 39. So my marrow toxicity seems mild to moderate and will not require transfusion. Will discuss Neulasta with MO.
My energy is great. I just rode 23 consecutive days on my motorcycle around Western Canada with daily short hikes. Though I definitely could feel strength drop off from the castrate T the last two weeks. I start back on high testosterone today to prepare for my backpacking Summer season. Will hit the John Muir Trail for a section hike in 2 weeks.
Thanks for everyone's interest and support. Truly appreciated! And If I should need to go back to Perth to repeat the 2 treatment cycles again, I will do so. (Stab it with their steely knives and try to kill the beast."). Happy Summer to all. -Paul
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MateoBeach
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Paul, Many thanks for the update. Other than still being a bit of a walking nuclear "reactor" (as in setting off scanners everywhere you go), It seems you have possibly gained the upper hand - and the long trip to OZ might even prove to have been on a yellow brick road of sorts. We all hope that continues to be the case. Now, let's hope your marrow bounces back and those CBC numbers quickly climb back into normal ranges.
One thing for sure, none of this has slowed you down a bit - making you an excellent active role model for all of us PCa patients, regardless of age or treatment status. ADT is one perpetual QOL bummer and cycling with TRT sure seems a treatment model that offers a significant overall boost to QOL.
BTW, the spectacular photo over at "another HU forum" makes all of us jealous. Heck, even your dog is captivated by the view. You and John Muir have a great summer together. Most importantly, Stay Very Safe & Well,
Thank you K-9 terrifying one. I just grabbed that photo from the Sawtooth range off my desktop. Tried to post an image of the Many-Armed Terrifying Warrior Goddess with all her weapon bearing arms here. But didn’t work from my iPAd. We are each that among each other K-9, it seems to me. BTW, does S&W refer to Smith and Wesson, or Safe and Well? Double implication for Warriors. Salute.
Back in the day, I never dined at the S&W in Asheville, but did many times at the ones scattered elsewhere around the Old North State.
And while not getting anywhere close to the mountain goat turbo T-boost you are, I've just gotten off 2 months of Lupron mono (T=8 w/ <0.04 PSA) and am looking forward to a prompt return to my normal range of 450+. That might not qualify as a backpacking w/ John Muir range, but surely would get me to a day-hiking with HDT at Walden Pond range.
Safe travels in the backcountry, Brother. And may Good Health and Good Times, shared in Good Places with Good People be your Good Fortune throughout the summer - and beyond.
Ciao - Captain cujoe - the sometimes Nautical K9 Terror
Sorry K9, that was a photo from last year anyway. Here is the Canada adventure just completed. And off to backpack on section of John Muir Trail in 4 days. Am a very lucky guy with APC. Working on a post with what I have learned about modified BAT (so far). Pablo
Paul, I started this reply before you posted the second photo. That's a bad-looking Beemer there in both photos. A quick scan of reviews came up with these jewels:
"Five years later, the GS got throttle-by-wire, riding modes, a Multi-Controller wheel for navigating settings and menus, multiple ABS modes, and Dynamic ESA that adapted the suspension to riding conditions. In 2019, the GS got the ShiftCam variable-valve timing system, a 5.7-inch TFT color display, and infotainment via Bluetooth connectivity to a smartphone. And the latest GS has a 6-axis IMU, which provides input for cornering ABS, lean-angle-sensitive traction control, and semi-active suspension, all of which have different settings for each riding mode. A new option on the 2024 model will supposedly do your taxes, but don’t quote me on that."
"The GS’s enduring and broad appeal stems from its excellent handling, versatile performance, comfortable ride, comprehensive features, and renowned durability and reliability. It’s a capable canyon carver as well as a comfortable highway cruiser, great for loading up with a passenger and gear, and is surprisingly capable off-road. Nearly every GS owner – and motojournalist – has, at one time or another, described the bike as the Swiss Army knife of motorcycles."
Yours looks to be a 2021 year model, so I guess you still have to do your own taxes unassisted by the GS. Coupled with the driveable RV, you, Johane, and your very own K9 companion (no look of "terror" there), it sure looks to me like you know how to travel and have lots of fun while doing it. I've been close to that mode of yours in the past and am working on getting back there again.
You are very correct in your recognition that those of us with APC who get to maintain active lifestyles are indeed a fortunate few. Paying tribute to that is a duty and an honor for all of us who qualify. As for the post you are working on, re: BAT, I will very much look forward to it, as I expect BAT is somewhere out there in my treatment future. Your generously shared insights will help guide me (and many others) in setting up a workable and effective BAT treatment protocol when/if that time comes.
Enjoy the John Muir Trial. And if you run into the ghosts of Muir, Edward Abbey, Ansel Adams, Stephen Mather, Gifford Pinchot, Aldo Leopold, Lewis &/or Clark, Wallace Stegner, or any of the other naturalists, explorers, and writers who had a hand in discovering, preserving, and telling of the beauty and mystery of our of Western States, do shake their hands for all of us who love the outdoors, as their spirits infuse much of the land you will be traversing on the Trail.
These several quotes from the Trail's namesake should help get you going: (Not that I can discern you needing any help with that.)
“Keep close to Nature's heart... and break clear away, once in a while, and climb a mountain or spend a week in the woods. Wash your spirit clean.”
“The mountains are calling and I must go.”
“Climb the mountains and get their good tidings. Nature’s peace will flow into you as sunshine into trees.”
"How glorious a greeting the sun gives the mountains! To behold this alone is worth the pains of any excursion a thousand times over.”
“Between every two pine trees there is a door leading to a new way of life.”
“The clearest way into the Universe is through a forest wilderness.”
And just in case you have forgotten where you are starting from, there's this from the Mr. Adams to remind you:
May you journey be a good one in every way - and may you return in good health and spirit. Keep being Safe & Well (carry your S&W, if that helps doing so) while on the trail and when you return to "civilization".
This such a delightful letter you have crafted for me, cujoe. I feel honored and inspired. Thank you so much. You are a gentleman and a scholar, as well as a sometimes terrifying K-9.
Indeed the current R1250 GS Adventure is an amazing machine. Twice the bike as my previous Africa Twin. My wife actually hates it that I have taken up riding again after a multi decade gap, but sees how much I am enjoying it. She was the one last Summer when I wanted all of the enhanced safety and comfort features now available that said: “well just get the one you really want.” (!) Wow what a wife. So I did. And thought “If not now, then when?” I’m still somewhat respectfully terrified of it, which is a good thing. All the safety gear all the time (ATTATG), including an advanced airbag vest. Go test ride one.
I just walked back in my house after the last of four consecutive 3 hour hikes with overweighted backpack. Crash training after the weeks in Canada with just short hikes. I know the Sierra passes will kick my butt this coming week. But I love that “Range of light”. You must be a mountain person too, given your knowledge of the explorers. Not many would Otherwise know the names like Pinchot and Gifford.
I think we should meet in person some day, and before too long. If you can ever come to Bend Oregon, or to San Jose del Cabo in Baja when we are there, I would be very happy to host you in a most comfortable manner. Pablo
Pablo, Appreciate the sentiments expressed. I may be a mountain man at heart, but outside of a year working in Aspen and living in a tiny cabin on a horse ranch near the old mining town of Basalt, I have lived my whole life within a couple of hours drive of the Atlantic Ocean. In my current marine home here in Eastern NC, 10 feet of vertical change is a "hill " and 30 feet a "mountain".
However, my recent pet/house-sitting in the NC mountains rekindled my interest in finding a way to spend more time in an off-the-beaten-path location - with some real elevation changes. Thus, I'm more than a bit envious of your Trail adventure. One of my all-time peak camping experiences was in Yosemite at a walk-in campsite overlooking a small lake up in elevation and completely removed from the buses and hubbub of the (over-) developed portion of the park. It unexpectedly (to us, at least) snowed about 6" overnight and we awoke to virgin snow in a idyllic setting. Breakfast over an open fire, shared with the only other 2 overnighters on a clear blue-sky morning just as perfect as it gets. I can remember it like it was yesterday.
So, I expect you will have your own peak experiences. The Sierra Mountains are filled with them and I'm sure you know better than me where to look for them. Seek, and Ye Shall Find. I also expect that we will meet-up somewhere in the not too distant future. I'm pretty sure if Marnie makes it here in 2023, we will do it then, if not before.
Meanwhile, keep that pack light and your spirit strong - because “The mountains are calling and I must go.” John Steinbeck's words near the start of Travels With Charley sum up best what real trips all seem to have in common:
When the virus of restlessness begins to take possession of a wayward man, and the road away from Here seems broad and straight and sweet, the victim must first find in himself a good and sufficient reason for going. This to the practical bum is not difficult. He has a built-in garden of reasons to choose from. Next he must plan his trip in time and space, choose a direction and a destination. And last he must implement the journey. How to go, what to take, how long to stay. This part of the process is invariable and immortal. I set it down only so that newcomers to bumdom, like teen-agers in new-hatched sin, will not think they invented it.
Once a journey is designed, equipped, and put in process, a new factor enters and takes over. A trip, a safari, an exploration, is an entity, different from all other journeys. It has personality, temperament, individuality, uniqueness. A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find after years of struggle that we do not take a trip; a trip takes us. Tour masters, schedules, reservations, brass-bound and inevitable, dash themselves to wreckage on the personality of the trip. Only when this is recognized can the blown-in-the-glass bum relax and go along with it. Only then do the frustrations fall away. In this a journey is like marriage. The certain way to be wrong is to think you control it. I feel better now, having said this, although only those who have experienced it will understand it. (emphasis added)
Nuff Said. Get on with the one foot in front of the other - in search of your own Range of Light. Let us hear from you when you get back, all S&W, of course. Ciao - Capt'n K9
An experience such as you had in the Yosemite high country can stay with you for a lifetime. Such is why we go. Why John Muir and so many others did go. Teddy Roosevelt. And why we return.Wondering which lake you were at. Perhaps May Lake? Backpacked there and to others with my wife last year. Magical.
While I don't remember the location, I looked at the NPS map of Yosemite before finishing my reply and that seemed to be the only camping area that fit the bill. Mid-morning we broke camp and headed down the valley to find that the snow had been rain at the lower elevation. That made the overnight snow even more special.
I remember hearing this unfamiliar "frump" sound during the night and unzipped the tent fly to find that it was the snow building up and then slumping off the rain fly. I was wearing tennis shoes when we walked in and when warming my feet by (in) the morning campfire, I heated them enough to cause the soles to separate. In retrospect, I'm reminded of that old Boy Scout adage about being prepared, but at the time, I would had just as much fun in shorts, tee shirt, and sandals.
There was also a solo hiker who was "sleeping under the stars" on a picnic table next to our campsite. In the morning he was long gone and the only thing he left behind was the dry impression of his sleeping bag in the snow. I guess he couldn't wait around to see what was on the breakfast menu.
Special times had in a very special place. What's not to like about that?
You're next in line, Dude. May the weather spirits be kind to you.
Looking very much forward to your post regarding journey of mBat so far. I’m getting close. Scans in 2 weeks will hopefully confirm elimination of Mets. Best, Mike
Thank you marnieg, this post was partially (mainly) in response to your email questions. I will send a more detailed reply with the non-clinical update. Could be worth a visit to break open that Firedoor together. 🙏
I would have liked you to have seen Johanne's face light up tonight at dinner when I said there was the slightest chance you'd be back again. She's been seconded to write up the report from the inquiry by the Royal Commission into disabilities and tells me each time she sees me she is trying to find quality time to write to you. Anyway, we only want you to need to come back if it's not for medical reasons. Otherwise see you in the U.S. Be nice if your Johane could enjoy Sydney though 😊
Thanks for your continued update on your n=1 experiment and the trend is your friend. I do debate whether this is something I should consider doing, but at this point, I think my course is set....Need to do some testing myself to see what my trend is... Enjoy the rides and the hiking plans... Leaving my job soon to complete other tasks and some piscatorial pursuits...
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