My experience with Lu-177

[Loujaro]

Dear fellows in misfortune. I’d like express here my experience with the LU-177 PSMA-617. Diagnosed in June 2020 following an iliac thrombosis, with a PSA of 30 and lymph node then bone metastases, I was treated with primary hormone therapy (Decapeptyl) then secondary (Zytiga) before becoming very quickly (less than a year) resistant to castration. I was able to be received in the Novartis phase 3 therapeutic trial called PSMAFore, at my home in France, at the Léon Bérard Center in Lyon. This trial, still ongoing, is reserved for cancer resistant to castration never having received chemotherapy. In excellent physical condition with excellent blood patterns, I was scheduled to give me six LU-177 injections, one every six weeks. I received two (systematically causing severe pain at the target sites) before leaving the study due to sudden hepatic cytolysis. In other words, gradual but rapid destruction of the liver, with transaminase values jumping 20 times over my usual constant, this with a moderate drop in blood platelets and a very unusual little hypotension which became continuous (around 90/60, sometimes less). Then, severe back pain appeared which presaged a possible epiduritis, a possible complication of the LU-177 treatment which would be quite serious and would require emergency care. However, this pain tends to recede at this time (I stopped the treatment for more than two months) and I will have a follow-up MRI soon. Having said that, were the first two injections helpful? Well, not really: stationary PSA, around 30, slight decrease in lymph node metastases (I no longer have my prostate) and very little effect on bone metastases. And yet, the Gallium PET-Scan carried out at the start of the study showed cancer largely expressing PSMA! Unfortunately, I do not have access to a new Gallium PET-Scan, not provided for by Novartis and not provided for by the French insurance system. My personal conclusion, subject to the general conclusion of the PSMAFore study in a few years, is that this system may not be ideal for use too early. Perhaps also LU-177 is an isotope that will be more effective in combination with others, such as actinium. Or that it will soon be replaced by others. In short, it seems to me a technology that is still very immature. Anyway, let's stay in love with life !!

[treedown]

Thanks for letting us know your LU177 outcome. Seems we have some that do well and others very much the opposite. Sounds like a roll your dice option as I have not read any specific success rates, much those related to disease progression. I have to wonder there's a relation to gett in ng the treatment at a facility with a lot of experience vs one with less, as this seems to be the case in most treatments for PC.

[Hidden in reply to treedown]

This entire game, is a roll of the dice! Take care tree! 🤞

[Tall_Allen]

Thanks for providing your experience here for the benefit of everyone, and most of all, thanks for participating in that clinical trial, which will benefit others.

There are some doctors who believe that everyone getting Lu177PSMA617 therapy should get both a PSMA PET scan and an FDG PET scan. The reasoning is explained in this article:

prostatecancer.news/2019/12...

Perhaps chemo before the Lu177PSMA617 would have killed off enough of the non-PSMA avid cancer cells to render the PSMA therapy more effective? I don't know. We obviously still have a lot to learn.

[Brysonal]

May I ask if you were still taking supplements? I can add Lu-177 in early but was advised to cut all supplements. When my history was taken including my supplements the fact I was taking zinc and selenium caused an especially high raised eyebrow as apparently they are definite no no’s with APC proven by a trial? It had never been mentioned to me nor history taken of my supplements . Not sure whether to go for the early Lu-177. Day 6 of Degarelix as first HT.

[MateoBeach in reply to Brysonal]

Especially in clinical trials they do not want to have extraneous factors present that could affect the cancer. Zinc supplements as long as a zinc ionophore such as Quercetin, is present can favorably affect PC. Selenium is controversial but, on balance, probably has a favorable influence on PC as long as the blood level is not already high, in which case it can act adversely. I’m speaking about the uses in treating established advanced prostate cancer, not the prevention of PC. And not in a clinical trial of another regimen. And not during or after any radiation or probably chemotherapy.Otherwise you will have to do your own research and discuss with an MO who is actually knowledgeable about the specific item. These are taken as a drug or therapeutic support and not for a nutritional deficiency. So must be considered carefully and not taken haphazardly. I am not suggesting these or any other supplements to anyone. Though I have chosen to take some myself.

[MateoBeach in reply to Brysonal]

Some information for your consideration and discussions about Selenium and Zinc

The association between Selenium and Prostate Cancer: a

Systematic Review and Meta-Analysis

pubmed.ncbi.nlm.nih.gov/299...

Evidence that Human Prostate Cancer is a ZIP1-Deficient Malignancy

that could be Effectively Treated with a Zinc Ionophore (Clioquinol)

Approach

ncbi.nlm.nih.gov/pmc/articl...

[Brysonal in reply to MateoBeach]

Thank you so much, really helpful as ever

[Loujaro in reply to Brysonal]

In this trial, I was not permitted to take any supplements. When my transaminases went up, the doctors pressed me with questions: What else are you taking? what are you hiding? Good little soldier, I hadn't been taking anything (except vitamin D and calcium prescribed with the Xgeva) for weeks, whereas before, I felt better by taking chaga and turkey tail mushrooms, aloe arborescens, resveratrol and ursolic acid. It is true that I took fenbendazole for a few months, and I may take it again later. But during the study: nothing at all ! And I had never had an effect on the liver with the supplements, or Zytiga, or Xgeva, or anything ... The nuclear doctors didn't want to believe that their dear lutetium was so toxic to the liver. While this is a recognized effect of Lutathera, for example, version of Lu-177 against neuroendocrine tumors of the pancreas.

[Brysonal in reply to Loujaro]

So sorry to hear it was toxic for you, generally we just hear about a dry mouth and the success of the vision trial. Thank you for documenting, really helpful

[Fightinghard]

Good info. Thank you.

Many of us only hear about the success stories from LU177 and forget that it does not always help. This was shown in trials, but we all are desperate for another optional treatment.

[bellyhappy]

Thank you for sharing your journey on LU 177....I had just done my 3 rd infusion of LU 177 and it has been reasonably successful.PSA has dropped to 0.202...and all other blood tests are within the range. The PSMA/PET scan had also shown improvement in all the lesions except for two spots near the prostate and the pelvis. Currently deciding if I would do SBRT on the two spots.

[Walkingwell]

That is really useful information. Thank you very much for sharing. Many things to learn and consider. I wish you the best.

[j-o-h-n]

I like your style......You're a Gem.....Thank you for documenting your journey and giving us a heads up on what we might expect. I think that photograph of how to medically treat a tin can is a rare work of humor...

Anyway, let's stay in love with life (and laugh all the time).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 12/01/2021 11:41 PM EST