Comparison of my Axumin and PSMA PET scans had shown high overlap of PSMA and non-PSMA expressing cancer cells. This was a positive prognosis for the Lu PSMA treatment. When my PSA and ALP continued to rise during treatment, I had surmised that there wasn't close enough overlap on the cellular level for the overshoot of the beta particles to kill the non-PSMA expressing cells. Before and after Axumin scans tell a different story.
I got an Axumin scan on Tuesday and It showed dramatic reduction in the bony lesions in the prior PSMA expressing areas. It also showed considerable new growth in other bones. It appears that this new growth isn't expressing PSMA.
Members have expressed concern that Lu PSMA treatment can lead to repopulation with Neuroendocrine Prostate Cancer (NEPC), but I don't think that is what is happening. NEPC doesn't express PSA, and I had a rapid rise in PSA during treatment. I think the new growth is adenocarcinoma that isn't expressing PSMA.
I'm not sure what this means in terms of how the treatment could have been made more effective. There seems to be anecdotal evidence that combining enzalutamide with Lu PSMA yields better benefit, but the sample size is small.
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Javelin18
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The VISION trial did show dramatic results for a third of patients. I don't think they know why it works great for them, moderately for a third, and not at all for the other third.s. Since the side effects are minor it seems worth the gamble. The overall benefit in the trial was much better than cabzitaxel.
I think it's good to monitor progress, and jump off the treatment if it isn't working. I stopped after three cycles.
Hope says, the VISION study compared LuPSMA to "nothing," which would ordinarily never happen. "So, the VISION trial doesn't really help you as much in terms of deciding which treatment to choose," he says.
I think the key point in the link was, "standard of care in the VISION study excluded chemotherapy, immunotherapy, and other agents that doctors would otherwise try." That seems very questionable in meeting the definition of SOC, let alone in being fair to men in your control arm (apparently, the drop-out rate was very high in that arm).
Salivary glands are put at risk. Loss of them can be more deadly than the cancer.
A Fair portion of us will end up on dialysis before we die. Psma treatment damages kidneys and can speed that up.
There is a good reason they limit you to 8 psma treatments.
And these are the types of side effects that are easy to pooh Pooh and under report. Their impact isn't immediate and for some never really becomes apparent to the treating physician.
Much like surgeons saying a little urinary leakage doesn't really count. I have heard a number of patients grumble about being mislead by their urologist on that one.
Okay, I guess I'm showing availability bias. I didn't have any side effects, other than mild pain and inflammation in the areas where PSMA was most strongly expressed. For me, the side effects where much less than taxane treatment. The VISION trial did report side effects.
I only have my personal experience but after 3 Lu-177 treatments I didn’t even get a dry mouth. I was iced / rehydrated for 4 hours after though
Bloods 18 days after my third treatment all within norms
However I agree it’s best not to over rely which is why I have said yes to next three sessions being chemo rather than more Lu-177. I do think it’s going to end up ‘in the mix’ of early treatment protocols eventually rather than the ‘at the end’ use that VISION trialled.
Side effect wise 3 Lu-177s for me has been very easy. Not expecting the same from my 3 chemos but think you are right that early chemo has an important part to play
During the lutetium psma treatment which other therapies did you received? I think only ADT? Maybe enzalutamide would prevent repopulation? Now you are receiving chemotherapy. Can you try simply adding enzalutamide to it now, ASAP and hope that enzalutamide will work now? It is recommended to have chemo if abiraterone stops working and try with it again or with enzalutamide before you become very experimental by taking part in phase I clinical trials?
I was continuing abiraterone during the Lu PSMA treatment. I don't think it has the right method of action to benefit Lu PSMA treatment.
I'm going to discuss adding enzalutamide to cabaxitaxel, with my MO. The only drawback is that it's seems clear that won't lead to a cure. There is a chance of cure with CAR-T, but still much to learn about it.
I think it's an open question as to whether combining the cabazitaxel with enzalutamide, or sequencing will buy the most time. There is evidence that sequencing can make taxanes effective again. At this point I'm trying to buy time to find a new cure. As aggressive as my cancer is, I will need to be on a trial in the next 6 months.
I could try provenge. It seems to run into trouble with the immunosuppressive environment. CAR-T overcomes that by wiping out immune cells prior to infusion. This wipes out immunosuppressive components.
I don't know the answer to that. All I can do is make an educated guess on the treatment with the best chance of success. I do know that at this stage there isn't an SOC cure.
Provenge extends life and that is what you want. If I could do provenge I would 100% do it despite the opinion of my oncologist that it 8s not worth it because it doesn't lower PSA. The point is that provenge is pruven that it extends life. I would do it before being pushed by my medical team into any phase I clinical trial. Provenge is your standard of care now. I am in Australia and I was told by my MO that I would need to come out with 120k US Dollars to do provenge in LA.
As I think I explained to you before, you wasted your time with an Axumin scan. Axumin picks up cancer metabolism of proteins. This occurs at the same time that PSMA expression occurs. What you want is an FDG PET scan to pick up discordant areas.
Have you been diagnosed with NEPC? Why would you worry about that?
Yet, Michael Hoffman, the doctor who did all the work on discordance uses FDG. What reason does your doctor give for not following his protocol? Has your doctor done an independent study using Axumin, as yet unpublished? I believe the metabolic changes (to glucose metabolism) are accompanied by loss of surface expression of PSMA - they seem to occur at the same time.
You may be interested in this slideshow he used at a presentation:
I haven't been diagnosed with NEPC and am not worried about it. I only mentioned that because I've seen comments from others saying that Lu PSMA treatment might trigger repopulation with NEPC
The purpose of my post was to pass some unexpected information that might be useful to others. I wasn't asking for opinions on my or my doctors reasoning. I think I need to take a break from the forum. I just returned from a chemotherapy treatment, and I'm not feeling the conversation is supporting me
Don’t quit on us brutha. Texting and other written forms of communication can easily be taken the wrong way. I think people were just trying to understand. But you are surely under no obligation to respond. But regardless, you will generally find support and great info on this site. We hope you stick around but understand if you feel like it’s best to leave. Good luck either way. We care…
I have found your posts invaluable and helpful in every respect. I hope you are coping with chemo. I couldn’t respect more the decision making you have shared and for me it was interesting if disappointing for all, but especially you, to hear you developed new non PSMA positive mets.
Currently the amount of understanding of this disease is tiny, with so many unanswered questions. .
For me I like to read clinical trial results ( sometimes to be honest as a non medic I think ‘ no s*** sherlock’ ) but given there is so much left to do I also like to read about individuals and their experiences especially the guys I think of as ‘pioneers’ looking beyond standard of care.
knowing your Lu-177 failed helped me to remain grounded when I started my own Lu-177, it helped me to accept that chemo (that I hoped to avoid) was probably something I should say yes to.
I am very grateful to you and the other pioneers looking beyond standard of care .
Standard of care is easy to read up on and unfortunately it is not achieving outcomes we would choose.
Pioneers who Not only look beyond standard of care but are prepared to share decisions made and results such as your latest scan are to me invaluable.
I will be sorry to lose your insights from this forum.
I was doing 4 psma pet scans 2 weeks apart each for medical science. "ADT and me." for professor Emmett. To see how the psma avidity of the cancer is changing after just starting ADT. I received about 50 mSivert radiation but I wanted to contribute this way. There was a young man probably the registra and I asked him about the lutetium osma therapy in the nuclear medicine. I asked him who is doing that lutetium psma therapy. He said people at the end of life.
The VISION trial was all late in the day treatment but the PSMAddition trial recruiting in 42 locations atm is for guys who were like me newly prescribed ADT. 45 days of ADT only allowed and still not up and running in the UK so wasn’t an option for me. However in hindsight I feel happier with this non standard combo of 3 Lu-177 plus 3 Chemo infusions. The chemo bit is SOC of course. Not sure what the Degarelix on its own would have done to my PSA and mets but all headed in right direction.
I am not an expert, but i believe 6 cycles of docytaxel is recommended except if you have side effects. When I was doing it I think that they said to me that I may need to switch to weekly cycling instead of a usually 3 weekly cycle. Of course the dose is smaller if they switch you to the weekly cycle because of the side effects. Try to do 6 cycles of docytaxel. I found a detailed explanation from Fred Saad about it.
Yes I am aware there is no protocol for 3 x Lu-177 and 3 x Docetaxel at all let alone Lu-177 as early use when hormone sensitive
However I am being closely monitored with decisions being made on a response basis as I have no curative pathway alternative available following failure of HIFU when local and SBRT to first two bone mets.
The base plan is a systemic triplet however
Degarelix
6 infusions ( 3 Lu- 177/ 3 Docetaxel)
Advanced hormone therapy drug ( still to necstarted(
I am being monitored blood wise every two weeks including PSA, had scan after each Lu-177 and full set of comparative scans after the 3. Docetaxel infusions is planned.
So it’s an incremental plan based on SOC but with early Lu-177 added in for which there are trials running but no data.
I didn't do any scan in a last 3 years. As I said I received too much radiation during my lifetime. And I received unnecessary 3 PSMA PAT scans. My GP warned me about radiation. I hope you also know about it? It quickly adds up.
I don't know about you but when I was dx'd with 1621 PSA and widespread bone and lymph mets concern about scan radiation went out the window and has stayed there. lol.My cancer care comes first. A GP telling me to limit exposure would go in one ear and out the other lol.
My PSA was between 0.12 to 0.39 in the last 3 years. I was told that the psmaPAT scan wouldn't pick up anything yet. I had a lot of scans at the start until my PSA didn't drop. I also don't want to pay 500 dollars if a negative scan result is expected. After 100 mSivert radiation when you know that all adds up you just don't want to do it. I would do MRI but they don't want to sand me as it takes 3 hours each scan.
Hang in there Javelin - we are all in the research phase with many unknowns - and there are so many different opinions. Let people write what they want - and take on board that which seems right for you.
Thanks to those who sent messages of support. I will be back when I have the strength. I have seen the love and support of this community, and my reason for being here is to give that support to others.
When I first visited Dr Dorff at City of Hope, last February I made eye contact with a woman across the lobby. At once I knew her pain was also mine , and knew there was nothing I could do to help her.it still brings me to tears thinking about it. I'm here because of her, and all the others with this disease.
The gospel last Sunday told us to turn the other cheek. At the end of his homily the priest said "This is hard, but he doesn't say you have to like them. This is about your actions not your feelings."
I'll be back a bit later, but probably going back to more abstract subjects, and less sharing about my journey.
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PSMA expression & Survival in advanced PCa treated by 177 Lu-PSMA-617 Radioligand Therapy
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Six cycles of Lu-177 treatment
