In 2010 at the age of 59, I had Da Vinci surgery with a Gleason 4+5=9 and PSA of 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement and Gleason post-op score was changed to a 4+3=7. Subsequent PSA was non-detectable as tested every three months for the first two years. Five years after surgery I started TRT. (Testosterone replacement therapy)
PSA remained non-detectable with no incontinence and an active sex life. In 2019 the cancer suddenly went active again with PSA rising from zero to 2.0 in 18 months. Auxium PET scan revealed two lesions in my seminal vesicles so I started Lupron with Cassodex for six months. After four months, I had 35 Proton treatments targeting seminal vesicles and prostate bed. A few months later when the Lupron wore off, and my testosterone rose, my PSA started rising immediately. A new PSMA scan at UCLA June of 2020 revealed a microscopic lesion in right pelvic bone.
Three treatments of SBRT was used 6/20/2020 without ADT because doctors said it would not be needed on such a small lesion. But right after SBRT treatment my PSA continued to rise monthly from .29 to 4.9 over six months. (It was a slow rise at first but the last two months my PSA skyrocketed from.68 to 4.9). No one could account for the dramatic rise except that during that time I had a severe eColi blood infection treated with IV antibiotics.
New PSMA scan 10/18/2021 indicated two small lesions in my lower spine and one in my hip bone. So I started ADT 10/27/2021 with three treatments of SBRT performed at UCLA 18 days later. Blood work on the day before SBRT showed my PSA had dropped to .070 along with testosterone to almost zero in 17 days. PSA 05/05/2022 was .008 and testosterone <7 ng/dL.
Even after SBRT, we realized that spinal mets means the possibility of lingering rogue cancer cells or micro tumors too small to see on PSMA scans. We hoped that those could be starved with ADT. Dr. Steinberg at UCLA thought that SBRT plus ADT was sufficient. My City of Hope oncologist, Dr. Dorf, continued Orgovyx with 90-day shots of Xgeva. (My hemoglobin immediately dropped to 12.) At the thirteenth month on Orgovyx, PSA began a slow rise indicating castrate resistance.
We briefly added 250mg Zytiga + 5mg prednisone before starting Eclipse trial (LU-177 I&T) in June 2023. Beginning PSA was 3.3 and directly before fourth injection in August, PSA dropped to .25 Unfortunately, after fourth injection PSA was .30 and rising. It should be noted that due to cardiovascular problems I stopped all ADT right before last LU-177 injection and remain off.
After October PSMA scan, Dr. Kishan at UCLA found two of three original small spine lesions remained and then immediately hit them with one SBRT treatment.
Directly after SBRT I started and completed Provenge series. A month later PSA went from 2.0 to 1.77 and currently remains at 1.7
Hemoglobin fluctuates between 9 and 10.6, probably due to the Plutonium LU-177 injections damaging bone marrow. In an attempt to jump start red cell production on 12/27/23 I received an iron infusion which helped a little. Will my bone marrow ever start working again?
I’m not sure if the the SBRT will continue to affect PSA causing it to become non detectable or if it stays the same. We know that Provenge does not affect PSA, yet any PSA level means cancer is somewhere. Plan is for a durable remission with the help of a hematologist overseeing blood work and advising how to fortify my immune system.
Due to cardiovascular problems, going back on ADT is a last resort. What do you guys think?
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I’m not sure of all the options. That’s why I’m asking you guys. If I could keep my PSA at 1.7 I wouldn’t do anything but monitor it. I’m still not sure if the SBRT treatment last October has finished doing its job. I am also considering an FDG scan as that supposed to be more sensitive for bone mets.
I fight this hideous disease, 24/7 with research, diet and nutrition, hard-core exercise and hopefully the latest technology. I believe in mind over matter, and the power of positive thought.
thanks for sharing. I’m hoping to get into a LU177 trial at the end of the month. Can you share you top three diet recommendations? I know to cut sugar, but what are your biggest food intakes?
Just wondering what you have done with diet and nutrition. I am new to this journey and would like the learn where others are having success. Keep up the good spirits and positive attitude.
I've done the whole food plant-based diet for 4.5 years. I don't know how it's impacted the cancer (stable but metastatic), but it definitely has greatly improved my weight and cardiovascular measurements/blood readings.
Thanks for sharing. I am just learning and I'm wondering if anyone has experience with the Dr. Thomas Seyfried's Press-Pulse protocol. He purports that cancer is a metabolic disease and can be managed with diet and repurposed drugs. Anyone have experience with this?
Interested in your exercise routine. I am Gleason Score 9 on half of my prostate, and one zone of 6 on other. I will get a Cyberknife treatment in about 3 months, and will start ADT asap. I am a very healthy 84 year old. The most likely action I can take to extend my few good years is a kickk-ass exercise routine of weights and some cardio.
I have worked out in gyms on all five continents of the world and know the drill. Thoughts? Thanks.
Diet and Nutrition: Five servings per day of organic fruits and vegetables like apples, blue berries, bananas, broccoli, mixed green salads, artichokes, sweet potatoes, avocado, mushrooms, cauliflower chips,
Feeding window: 11:00 am to 5:00 pm (dinner starts at 4:00 pm ends at 5:00 pm)
120 grams of clean protein daily: Egg whites, green smoothies with broccoli apple, banana protein powder, organic chicken, grass fed steak, lamb, wild caught fish, shrimp or crab.
Two intense exercise periods per day: Morning hikes, Yoga, mid morning weights or wrestling.
Sleep cycle: Between 9:00pm to 5:00 pm (in bed winding down at 8:00pm )
Holistic Health: Yoga and meditation every day.
Reenergizing: Short early afternoon nap.
New skill practice for brain fog: Afternoon piano practice
Afternoon piano practice is right on. I have played for most of my life but sold my piano five years ago due to the size. I bought a decent Casio 88-note keyboard with weighted keys last Spring. Love it. It translates to a real piano well enough that I can bang out hymns to the congregation at church. I get lots of applause but them most of the people are old with hearing aids.
I have been seriously studying the Hanon exercises in all keys, musical theory, improvisation and harmony, and various styles such as rag-time, swing, jazz, gospel, and country.
There is so much to learn that I have to extend my prostate demise for at least ten more years to 95. A mother of a musician in our church was a go-getter on the piano and played for the masses up until the second day before she passed away at 96. Maybe I can do the same.
I'm an author as well and have to finish my current historical fiction novel and complete three more.
Got to go. I have work to do and am going to the keyboard as we speak. Got to hurry as I start ADT in about two weeks.
I bought a Yamaha electric piano and have been teaching myself to play in an effort to clear brain fog. My thinking and speech cleared up within a few weeks. But so far I can only play Fur Elise 3/4 of the way through. Studying advanced mathematics or a new language also is recommended by the experts.
Tell us about your writing. I write historical fiction with action and adventure themes. My first three novels start with sailing a brig, Agilis, into San Francisco harbor on July 4, 1849—the start of the gold rush. My protagonists desert the ship for the gold fields. What a time they have in early California.
To me, Für Elise has simple notes but takes practice to play smoothly with feeling. How are you doing with it?
The website hoffmanacademy.com/ has good and free piano lessons.I just finished a book The Inner World of Piano Improvisation by Ron Drotos. It releases your inner world of music.
My husband has a similar circumstance to you and is currently on Zoladex. Can you elaborate on what cardiovascular symptoms led you to stop ADT? He has a family history of heart challenges. All the best to you in your journey. Thanks!
Nuclear stress test followed by CT angiogram showed a calcium score of 890! But a subsequent angiogram revealed clear arteries. Cardiologist was shocked and determined the calcium buildup is outside of my heart not inside. My lipid tests can't get any better so it was attributed to Orgovyx and family history.
Looks like you have been doing everything right with diet and exercise. I'm surprised that ADT is giving you cardio problems. Are your hikes getting your heart rate up enough (as in hilly terrain) to help build/maintain cardio?
I was diagnosed at 4+4=8 with PSA of 24 at 58. I was doing a lot of running at the time, but since have shifted about 1/2 of my running sessions to weight-lifting (3-4 cardio and 3-4 weight (depending how I split my workouts)). My resting heart rate has inched up and while it could be from ADT (especially impact on sleep) I think the decrease in cardio work is a main factor. Resting heart rate was 46-47 just over a year ago to around 51 today.
For LU-77 context I've done 5/6 LU-77 on PSMAddition trial. Doc stopped 6th as neutrophils were on the cut-off line. PSA has been undetectable since the early summer. They are monitoring blood to see if the neutrophils re-bound for a possible 6th injection. They will bend the rules given that it will be 12 weeks between injections rather than 6 weeks as per trial protocol. My mets have decreased significantly, only low activity in two spots. I'm getting bone/CT scan mid-Jan to check. The last scan reports suggest that the LU-77 was working, but I'm not sure that it wasn't the ADT that was doing most of the work since my PSA was low at the start of the trial.
I agree being positive is best. In some ways, I am actually in a better state (mentally) than before diagnosis!
Because of hemoglobin at 9, I can only hike 2.5 miles, 4 days a week--but half of that is at steep incline. I also wrestle and lift weights. Blood pressure is 112/70 and resting rate 50. Loss of muscle mass is annoying.
Up to pee several times a night because I'm still waking up with hot flashes. No Orgovyx since early August but testosterone is inching up very slow to current 160. Will hot flashes ever end?
I see LU-177 lowers PSA on some guys but PSA always returns. Haven't seen anyone go to non-detectable without ADT. My PSA was only 3.3 when starting LU-177 and .25 at the end. I should have had a better result. I gave them two blood tests after treatment and then lead investigator ghosted me. No response from anyone until last week when told I was kicked out of the trial without reason. My guess is that their data is being manipulated not to show failures.
Getting kicked off the trial without reason? Keep bugging them to find out why and let the rest of us know.
I wonder about the nature of initial Gleason + PSA and the individual nature of our pca. Your started off at Gleason 9 but post-op it was 7? Two different measurements of the same tissue? Your PSA was relatively low. I was Gleason 8 and PSA 24 at diagnosis so definitely higher and before finally getting treatment (ADT) PSA had went up to 49 (which made me decide on the spot for ADT). Don't know if the PSA/PSMA expression of my pca impacted LU-77 treatment (despite that fact that PSA was already lowered from ADT). If I were looking at a good patient to "help" with the data for the trial, I would think I was a good candidate (quick response to ADT, relatively low burden mets, just enough PSMA expression to meet trial guidelines). That being said, I was fully on board with being data for the trial.
I'm definitely ghosted from the lead investigator-- my only contact. Beside that...since this is a multi-billion dollar industry I don't expect much truth.
The most accurate way to read a biopsy for Gleason scoring is to exam it after removal.
To answer your original question about Pluvicto, it appears to have been successful in my husband’s case. Not a cure, but as the dr said, “ you’ve kicked the cam down the road”. We’re not sure how far or for how long, but scans showed reduced mets and PSA is down from 194 to 10. He is slightly anemic and platelets remain slightly below normal, but this feels like success. MO said his patients have had a 50/50 response. We are so grateful to be in the positive group. Best wishes to you as you navigate the after effects and next steps.
You could consider trying Leukine (an immune stimulant) to see if you are one of the fortunate PCa patients who can benefit from off-label use of this medication. Very few MOs prescribe it for PCa. Mark Scholz is among a handful of docs I'm aware of that sometimes use it.
Leukine's cost is quite high and getting insurance coverage can be challenging depending on who your coverage is with.
Here's a link to one of Eric Small's RCTs of Leukine for PCa:
You might also consider Xtandi (or Nubeqa) monotherapy (not as effective as combined with an agent to lower testosterone but avoids some side effects). Leukine + Xtandi combination also worth considering after determining if Leukine has a favorable effect in your situation.
Have several young, strong muscles on teenagers in neighborhood to shovel snow. Good recommendation though. I have lifted weights my entire life and know how to go light with high reps. My cardiologist wants to see me about a month after I start ADT.
Not that I have much to show for my weights training. I lived with a full-blooded Comanche for six months. He was a champion wrestler from Oklahoma State University. That fellow outweighed me by ten pounds and was built well below my center of gravity. He wanted to wrestle all the time but it didn't go well for me.
For what its worth, I've been advised to lift heavy. Out of caution, I my routine is half machine and half free weights focusing on the negative so I use lighter weight but still get a healthy burn.
My experience with Lu-177; 3 treatments, 1st was same technology but alpha particle, AC225(better for the bone mets I was told), 2 remaining treatments Lu-177. All were 4 weeks apart. PSA dropped from 180 to 7 after 1st treatment. By the end of the 3rd, PSA was .25. Began Orgovyx at the same time, so cause for PSA drop could be ADT , Partly ADT, or synergy between the two modes. In any case PSMA scan was nearly clear and Dr. called for a 3 month hiatus and reevaluation, said there would be residual effects from Lu-177 and immune system also learns to go after the cancer. Waiting for bloodwork and follow up PSMA scan next week. Still on Orgovyx in the interim.
I did the beta version and even the doctors at the clinic said the alpha version was far stronger and also easier on the kidneys. The only way to find out if the LU 177 is effective is to go off of ADT and see what happens. Good luck my brother.
you have done all the right things. Sucks having it come back after 9 years clear. You could consult with Dr. Nat Lenzo at Genesis Care in Perth about Lu177-J591 which worked very well for me after SBRT. Just that your bone marrow function may be the limiting factor for that. How are your platelets and WBC counts?
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Anyone have experience with Ac-225 after Lu-177
Anyone With Recent Treatment LU 177? Pretty sure we are going to Germany soon.
Lu-177 update
