I live in Southern California, but applied for acceptance into the Eclipse Trial in Miami Florida. The criteria was that I had to be castrate resistant and failed at first generation ADT, as well as second generation ADT. Plus that I had to have a minimum PSA of 2.0 with two consecutive rises one week apart. Once I reached that threshold, the company sent me a ticket for Miami and put me up in a local hotel for a week for further testing for whatever. A few weeks later, I was notified that I was accepted into the trial and to standby for flight arrangements and hotel accommodations.
Currently in Miami and had my first LU-177 treatment yesterday. Lots of bloodwork and a couple of SPECT CT scans before and after treatment. Doctors here will perform those same tests almost every day for the rest of the week before I fly home. I feel terrific with no side effects whatsoever. Curium authorizes up to four treatments as necessary.
My PSA was 2.0 and failed Orgovyx along with Zytiga. Currently a little bored because I’m confined to a hotel room for a few days due to being slightly radioactive. This is the most caring team of doctors I’ve ever encountered. Please ask any questions or share your experiences.
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I lived in Miami for 35 years. You’re in a good place for some awesome Cuban food. Get Doordash or Uber Eats! Best of luck to you and I hope you see great benefit from participating in the trial.
I live in Sydney Australia. You can see my PCa history over nearly 3 years in my Bio. After a PET-PSMA scan a few weeks ago I was accepted for Lu-177 treatment (not a trial) which I have signed up for.I had my first Lu-177 treatment here in Sydney 2 days ago (4th May). I'm feeling great thus far. I had a pre-scan, the Lu-177 injection then a post-scan. The next day I had another scan. They're going to call me in a few days after they have analysed the 3 scans although they have advised that nothing definitive will be known until after my second treatment in about 6 weeks. I'll update my Bio. My PSA was somewhere north of 484 when last tested.
I read your profile. I live here in Darlinhurst and a patient of the same hospital like you.
Can you ask for a Guardant 360 CDX liquid biopsy to see if olaparib or keytruda could be effective for you?
It is better if you do that as soon as possible as you may need some time to get your results back.
Did you have any recent tissue biopsy of your mets? What was the result?
Just letting you know that PeterMac in Melbourne Australia is the best cancer centre in Australia and that you could contact them about a tissue biopsy. They are a public hospital so probably they would not charge you for treatment etc.
I am still not contacting Peter Mac Callum cancer centre in Melbourne Australia as I am doing fine after 5 years only on Firmagon monthly injections. When my PSA started to rise I did the psmaPat scan and they didn't find any active met. Only cancer in 95% of my prostate SUV max 14.
I SBRT my prostate with Electa Unity MRI Linac at Genesis Care just across the road of our hospital in Sydney Darlingurst.
My last PSA was 0.31.
I was diagnosed in April 2018 as polymetastatic with distant spread in my neck under my skull.
We have a following clinical trial in Sydney with Actinium225 alpha particle emitter but you are according to my understanding not eligible now as you already received a lutetium Betta particle emitter.
You could still contact professor Emmett at the nuclear medicine department of our hospital about eligibility. Actinium is a stronger and milder to the bone marrow Alpha particle emitter. A clinical trial would not cost you anything.
I am having success with my 2nd Lu 177 dose. See my Bio. My MO, in the Eclipse Trial, says they are looking at combining Lu 177 & Act 225 in some way. Unfortunately Act 225 is even in shorter supply! Act 225 disrupts both DNA strands whereas Lu 177 only disrupts 1 strand.
There are possibilities of using Copper as a tracer in imaging, also, and then treating with it! So, we just have to hold on & try to get to next stop gap or maybe a cure?
I always thought that the PSA should be high for lutetium treatment but it looks like that it is working for you and your PSA dropped from 2 to 0.3 and you are on ADT alone.
Will you need to get all the number of lutetium infusions according to the plan or could you stop earlier?
The SUV Max was 53.0. The trial is for those failing SOC. One arm is either Zytiga or Xtandi with eventual crossover to Lu 177. I drew the "long straw" and started with Lu 177. The goal is to convince FDA that Lu 177 should become SOC vs. Chemo.
I will probably go with all 4 doses unless I have adverse reactions.
You are very lucky. I know someone who just finished with 8 cycles of Jevtana and still has bone pain. Now he is planning Xofigo and after that maybe Enzalutamide. He is also on bone strengthening medication. Denosumab.
Are you getting bone medication? Did you have a recent bone density scan? What was your results? What is your ALP now?
I had 3 rounds of Xgeva, in 2022, while on Erleada! My wife is a Dietitian and I have an excellent diet, almost no red meat and a large salad & fruit every day. Supplement with milk and yogurt every day, also.
i’ve had three 90-day Xgeva shots also. But make sure that the yogurt is organic full fat, grass fed, and that you supplement with vitamin D and vitamin K for better absorption. And if you still crave the steak once in a while, Costco sells Australian grass fed beef. It arrives frozen in dry ice. There are no chemical fertilizers used or chemicals in the animals. Grass fed in the US means grass fed for only six months.
I only eat a little ground beef with spaghetti, once per week. My wife would say there is probably no proof organic foods are better and are just a means to make more money.
Also, she is against Calcium supplements. The absorption rate is miniscule. She told my MO when he suggested Calcium and challenged him on it and he didn't argue. Doctors have so little knowledge of nutrition, generally. She has almost a PhD in nutrition. So, I tend to defer to her! She says one cannot beat vegetables for Vitamins, especially "green leafy"!
I would do the SBRT only if you don't have more lesions on the PSMA Pet scan.
With using lutetium so early you may end up with PSMA negative cancer. I am really not a doctor only trying to think with my own head.
They are doing this in order to experiment with you. The best would be to save up enza plus lutetium for later. At least that is what I would do myself. I still wish you luck.We all need that.
They've been doing this for several years in Europe and Australia and have not had this problem, to my knowledge? The lead Doc. of the Eclipse trial, at the Center of Excellence, at St. Louis U, did a fellowship in Australia to learn more about Lu 177 and I would hope is aware of any such risks.
I had SBRT, with Cyberknife, several years ago, when my MO (not with SLU) thought I was just Oligometastatic with just one legion but then the tumors nearly took over my spine. I then went back on Lupron and Erleada, which worked for 6 months and the lesions progressed again. I was headed for Chemo when my MO found out about the Eclipse trial and recommended me for it. So, I am relying some good Docs. on this.
Do you have any references on this type of progression? I appreciate your concern.
It looks that you have enough Mets to justify aggressive system treatment.
Are you asking about breading out PSMA negative cancer? I am not a doctor but from the internet it looks like that 80 % of the cancer is PSMA positive and 20% negative. Again It is according to my information from the internet. If you will develop PSMA negative cancer you could have chemotherapy.
I personally would also try actinium but maybe not many cycles.
You reacted great to the treatment. Your PSA is only 0.3 now. Hopefully it will continue dropping. Can you have Jevtana after 4 cycles of lutetium? Just to kill of the PSMA negative cancer if any.
Maybe in the future if your PSA starts to rise? What did the doctors say about chemotherapy some time after lutetium? It is only my idea.
Hi Seasid, apologies for delayed response to your questions. I'm new to the forum and most of your questions have terms that mean zip to me. I don't know anything more than I have put in my Bio.Is there a way that I can send you a private message on this forum? I don't want to publicly expose the name of my MO at the hospital.
May everything go right for you....with a same response to your tiny little bastards that the American Indians said to the Vikings......"NOT HERE"............
Scans show two of my small spine tumors disappeared and the larger is only half the size. And my PSA has gone down from 3.3 to .580. And there are two more treatments left. I know the PSA is not quite nondetectable yet but I’m getting close. What do you guys think?
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