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.
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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Thank you KokoPr. BTW, how are the sweet pups doing?Intrigued by the photo on your home page on HU. Looks like a Cascade volcano. Ranier or another? Nice photo.
Latest I see is that you have started on ADT finally. But have you considered Lu-PSMA treatments? Since it works better in lymph node only disease, without bone mets. You may not qualify For Pluvicto in the USA without prior taxane chemotherapy, unless they would make an exception. But you would readily be accepted for treatment at Lu centers in Australia, India, Germany and others, if you have the means and interest. Virtual consults are readily available these days to discuss the pros and cons. Best of luck. Paul
Hi Paul, it is Mt Bachelor shot from Hosmer lake. Doggies are great.I did try to get on a phase 1 clinical trial that TA pointed me to. It was Lu177 PSMA and SBRT out of MSKCC in NY but I didn’t qualify because i had 5 tumor locations and they only allowed no more than three.
I have been on Lupron only for 6 weeks now and working on getting darolutamide asap. My 30 day numbers were T<12 and PSA 0.38 from 15 prior to ADT.
I was having grade 2 joint/muscle pain, no hot flashes. I am also experimenting as others are. I started taking 10mg/rad-140, and 10mg/carderine. I don’t want the SEs of ADT. I am also hoping to get low dose E2. I’ll keep my bio up to date on my experiment. BAT is definitely in my future.
No wonder it looked so familiar. Yet unexpected. Mt B is my back yard winter and summer. Best of luck with your treatments. Curious about those unfamiliar supplements. Paul, an ADT hater.
Hi Paul, its a magical place out there in the three sisters wilderness.RAD-140, is a SARM designed drug for muscle wasting diseases, but used extensively in performance enhancing athletes like body builders and it is banned in professional sports because it gives an unfair advantage to the natural athletes which is what olympics and other pro sports are all about. It (SARMs) have also been studied extensively in the medical field because of it cancer fighting abilities and relief of side effects. No prescription needed so no money for big pharma so a no go on SOC doctors knowledge.
I’m so pleased to hear that you did well on your adventure and the treatment appears to be working as hoped. You are an inspiration. Enjoy your summer.
Thank you for sharing your experience! Some of us can benefit from the information. It is great to know there are all these options out there, that not all oncologists know about. Please, keep posting here.
Thank you (so-called) Oldie68. Just want to be sure everyone recognizes that this is my own anecdotal experience and not SOC nor even in a formal trial. Though it is “per-protocol” of an ongoing trial of Lu-J591.I invest much time and effort to keep my MO and RO on-board with my approaches. That includes sending them the best available peer reviewed research that supports reasonableness. And getting any consults with the most experienced research clinicians, for them to be okay with my evolving plan. I need them as a check on my thinking, etc. Paul
Great photo of you and your pet plus lovely scenery. Glad to know you are riding and enjoying yourself. Thanks for the updates. Take care and stay safe 😷
Much appreciated Paul. I believe you are on the leading edge in 4 categories: first, your love of life and enjoying the journey. 2) Your mBAT to hopefully extend hormone sensitivity. 3) SABR/SBRT of the Met (s) seen by PSMA PET Scans to remove any known solid tumors. 4) LU-J591 to wipe the slate clean of the micro mets. For me, this 4 pronged approach is the best model I have seen, or read about (and I obsess on research) since my own Dx 20 months ago (Oct 2020). #2,#3,#4 above are all new, in the PCa mainstream (not earlier trials) in this same time period. The evolution of Advanced Prostate Cancer is happening. Gosh, I hope for a GREAT outcome for you, your family, and us as a Brotherhood.
Sounds like all good news with a healthy outlook to boot. Once I have completed the LuPSMA177 trial at Dana Farber. BAT sounds very interesting. Three years of hormone therapy, looking for a better quality.
I don’t see recent info on your progression and treatments Ramp. What were the sites that lit up on PSMA PET scan? Since you are getting Lu at DF does that imply you have previously had taxane chemo and at least one AAR drug with ADT? Interested in what is going on with you. Paul
Morning Paul, One interesting fact about being in the LuPSMA177 trial at Dana Farber is that I do not see my scans. They tell me the outcomes and if I ask the proper question it is revealed. All blood work is documented and reviewed. Low red blood count has been the only concern but no intervention has been necessary to date. Up to this point I have not received Chemo. My cancer progressed after 18 months while on Lupron and Zytiga. Chemo was mentioned by my MO as the next step. By reading comments here and individual research I decided finding a trial study employing LuPSMA would be the next prudent step for me. Strictly by chance did I get into Dana Farber after a couple of emails and what seemed like an interview. I do know my cancer expresses over 95% PSMA. There was bone involvement on L4/5 which 5 sessions of radiation were scheduled prior to the trial. I also have a Lymph node in the left groin that has metastatic involvement as well. Once again this is what I am told. I have not seen any of my scans. To date my response has been good. PSA 8.2 to 0.21 after 4 infusions. My last scan, Bone and CAT, show cancer is stable. Still on Lupron, Zytiga was dropped. And as you state, fatigue being the only side effect. Some days I can go all day in the garage, I restore cars. Others I need to take a break, 20 minutes maybe an hour. I marvel at your capacity, keep doing what ever it is. Mark
Thank you, Scott. It’s always a daily calibration, as you well know, to do as mucha as you can and is reasonable to do. But to also get in as much rest and recovery and stay in positive balance with family (wife and dog). So it was good to be with them at the RV camp each afternoon. Sending you each a big loving embrace. Paul
You are Lucky and grateful and living with gusto! That is you brother .. I’m riding with ya vicariously ! I too , feel lucky in comparison to many of our brothers here . Each day under the sun is gift not to be wasted! Happy trails to you and the crew!🇺🇸🇨🇦🏍🏍🏍
Thank you, MB. Great photo! What is the benefit of going with Lu-J591 instead of Lu-177? How would someone arrange a consult with an AUS doctor you recommend? How many treatments do you anticipate there, and how long after infusion do you stay there? G
Hi Gary, I’m sure Tony will reply but this is the Lu J591 trial I’m on here in Australia. clinicaltrials.gov/ct2/show...
It shows Dr Nat Lenzo as contact. If you read Tony’s previous post about how surprised he was of the travelling distance to Perth ie 6 hours from Sydney. They maybe doing Lu J591 in Sydney, Dr Krieger of Genesis is involved in the trial. Less travelling time! Though Perth is pretty.
Well Gary, the first thing to do would be to get a current PSMA PET scan to identify the sites and strength of activity indicating PSMA avid metastasis. Ask for two copies of the whole scan data on discs, not just the report. One to upload at your current RO’s facility so he can fuse (merge) it with any other scans, compare with previous treatment fields, etc.
The second disc you ship FedEx or UPS to Theranostics AU for Dr. Nat Lenzo to review, and email your path report and recent labs.
They will arrange a virtual consult with you and discuss Lu possibilities such as J591 vs. 617, whether you qualify for trial or treatment outside of trial.
If your PSMA scan shows only 4 or fewer sites of visible mets, then you can discuss metastatic directed treatment for the oligomets with your RO at home.
You can read my summary of the differences between Pluvicto (617) and J591 in my previous posts (“Why I Choose. . “). There are links to the research there. The access point and coordination is arranged through theranosticsreception@genesiscare.com.au . They arrange for all of their treatment sites including around Sydney as well as Perth. As of May they had not set up for doing J591 treatments at sites other than Perth but are planning on doing so soon when staff and logistics for isotope handling are in place. So maybe you would have that choice now or soon. Personally, I liked Perth very much to hang out for the two weeks between treatments. But if you plan to commute home in between, then Sydney may be better.
Radiation after treatment is not dangerous to others around you very soon after treatment (precautions are carefully explained re sustained proximity to pregnant and children in first days, etc.) But you can stay in hotel or AirBNB and eat in restaurants, etc. They verify non dangerous (background) levels of body radiation before you leave after each dose. However, you will st off airport radiation detectors at screening, so they give you a letter to get you through okay. You can fly as soon as the second day after treatments, though I chose to wait three. Paul
Good to hear it’s going well, Tony, thanks for the post. I’ve been accepted into theLu J591 trial here in Brisbane but won’t start until Aug unfortunately as my PSA is getting much higher. I thought I’d heard that the trial has increased to 3 shots instead of 2.
Glad to hear the tests are positive. Great Pic, love that you are pursuing what you enjoy. Have a great summer.Thanks again for sharing your experience with all of us.
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