What has been found from experience, in this group, as to the benefits vs costs of this PSMA therapy? I know the effectiveness will vary as each person's Pca is unique but still we should be able to get a some sense of the percent of successes, perhaps by certain category of Pca.
I understand dry mouth is a primary side effect issue, either temporary or permament. Some say suck on ice during therapy, but there are other sites where PSMA affects as well as other side effects.
I am trying to get a sense of a benefit/cost, of sorts, via the experience of those on this site, that have done this therapy.
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podsart
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It was free here in the UK but it accelerated my husbands cancer and gave him many additional rumours after 3 sessions . He was extremely weak and could barely eat the whole 18 weeks he was on it
Wow; I could understand that it may not work but to accelerate your Pca? I wonder if this was seen during the trial period and if anyone on HU could explain it
Hi. I completed my six Pluvicto infusions last April. I still deal with dry mouth, which doesn’t sound like much of a problem, but believe me, it’s troublesome. I can’t go 20 minutes without needing water and don’t dare leave the house without it. I also deal with alternating diarrhea and constipation. At this point I’m assuming theses are permanent conditions. However, the mets in my lungs are “resolved” (still waiting a decent definition of that 😂) and I feel great, so the trade off is worth it.
All that are involved with the PSMA treatment decision process, are contemplating the risk of SEs, versus the potential benefits. The probabilities associated with these 2 sides of the coin, I assume mostly comes from the results of the clinical trials. Then we have the "rear view" results of those, like these ,that have gone through the treatment [post trials ]and the probabilities are replaced with the reality of their individual cases both positive and negative.
I appreciate your responses.
One question for those who have gone through the treatment: would they still go forward with this treatment, in light of their actual experienced positives versus their negatives?
Another issue re SEs is whether they are going to be temporary or permanent. Do the clinical trials really shed quality light on this issue?
Given the size of the HU population and the prevalence of PSMA treatment now, can we accumulate enough data to either reinforce what came out of the trials, or do we find that that post trial data is quite different? I dont know the size of the population of the clinical trials, especially phase 3.
Hi Podsart. I would definitely undergo the Pluvicto treatments again despite the side effects. After all, the mets in my lungs have”resolved”. Interestingly, to me, at least, is that any and all SEs seemed to remiss post treatment prior to the following one, except after the final treatment. Those have stuck around for the eight months since that last one. They aren’t pleasant but at least I’m on this side of the sod to deal with them.
So sorry. I completely overlooked that in my reply.
#1 SE is dry mouth. I realize “dry mouth” doesn’t elicit much pity but I’m talking Sahara dry mouth. I must carry water with me during all waking hours and frequently use lozenges which help. #2 SE is alternating diarrhea and constipation. I never know what tomorrow will bring. #3 SE is eye dryness. I find myself using drops daily which was never part of my routine in the past. Who knows what else is happening internally?
my husband did 4 rounds. Felt great while on it, was a good candidate for doing 6 sessions. After 4, bloodwork was off on alkaline phosphate (high number). A scan showed major spread of bone Mets, skull to femurs. PSA also went from 27 to 235. He is now on Jevtana: onco said he will do that until not tolerated anymore. Then it will be hospice
no explanation. Just said no point in continuing. But on other sites progression of new Mets seems quite common. His is staying in the bones but some have had it go into organs or lymph nodes
Pretty sure I am going to India to have what's called Pluvicto in the states. It is $18,500.00 for all the treatments. And airfare which makes it go up. I figure $25,000.00 for everything there. I actually have a friend that went through it about 4 years ago and so far he is OK. No pills or anything for it. Crazy it seems to work for him. He had it in the bone. I had it in the bone about 8 years ago when my PSA was 212. Pretty high. I went over there and had vaccines with APAC Biotech, and it actually seemed to work. I had a tumor in jawbone that was pretty big, and several in my spine. Somehow they disappeared. I have had more than one round of vaccines which may have made a difference. I have really bad diabetes, and just got put on a pump last week. It really has changed my life around. Crazy it what it is. They have a higher dose in India which seems to have saved some people. I really don't want to do it, but my PSA is now .35. It's still really low to be honest, but this will be my only time to go over there and try this. I did take the scans several years ago, and I was good to go for it. I am on Xtandi which has helped me stay alive for many years. Before I took the vaccines and it quit working after two months. With the vaccines it now works and is helping me. India, here I come again. I am taking my wife which is great. She has stood with me for this. I am really lucky for that. I will suck on ice so maybe I won't have dry mouth. Sounds like chemo. I was pretty sick with it. It was the ADT which just about killed me. My radiation oncologist was in on that and saw my sweat so bad. It was really horrible. So I have maybe gone two years with that. That stuff is the devil. Hopefully that will help me? Sure hope so. I was dx'd in August 2014. It hasn't been easy getting this far as we can definitely tell. I will be seeing Dr. Sen which should help me. She is at Fortis. She has probably the most knowledge in prostate tumors in India. Maybe she can help me. I hate spending all the money, but I know it's way better there than in the USA. We just don't get much here I imagine with the FDA here. Just the way it is.
So, I looked at APAC and first vaccine indicated as APCEDEN, a dendritic cell vaccine, which uses a leukapheresis process to generate 6 doses with 5-7 million tailored dendritic cells to infuse into the patient. Is this the vaccine you took? Sounds like our PROVENGE dendritic cell vaccine; is APCEDEN more effective than PROVENGE?
The other vaccine indicated by APAC is LTR-Memvaxralevel; is this the other vaccine you took, or some other?
Yes it is way more potent than Provenge. It is because they use your cells to make the vaccine. Just the way it is. I have done both. The first one is from Baylor. They use MRNA to help your body see the cancer. They aren't able to do it in the states. They have the knowledge. Just can't get it here.
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Treatment after Lu /Pluvicto? 
My Second Lutetium-177 Treatment in New Delhi
Lu 177 PSMA 
First Lutetium 177 therapy (PRLT)
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