I’ve been on Orgovyx for the last 15 months and three months ago my PSA started to rise and is now at .44. I’ve been hearing rumors about clinical trials for low volume disease but don’t know anything more about it. Can anyone recommend a clinic in Europe that might be experimenting on this level?
Pluvicto advisable for low volume di... - Advanced Prostate...
Pluvicto advisable for low volume disease? A recent PSA scan showed one tumor in my spine and one and a rib but also castrate resistant
No second-line hormonals or chemo have been used?
no chemo yet but started Zytiga last week
There are a few trials in the US that will take patients who have failed Zytiga but have not yet had chemo:
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
my PSA is only at .44 and some of these clinical trials require 2.0 in order to qualify.
If I were you I would consider chemotherapy
from what I’ve read it seems that Pluvicto has less side effects and makes for a longer life expectancy.
pluvicto seems to be more efficacious on chemo naive
I have no clue, but I am sure that they are oncologists who should know that.
In Australia professor Hofman, professor Emmett and Dr Lenzo etc.
If I would be in that situation I would try to contact someone who is an expert in that field.
I believe in US you could contact Dana Farber cancer institute etc.
I would not just simply go to India or Turkey without talking to someone knowledgeable in my country first.
Why not, immediately schedule sbrt.
While considering what to do about the castrate resistance?
That’s kind of the plan. I’m just trying to decide right now between proton and photon.
I recollect that Tall_Allen has said there is no proven difference between the two
Though I am highly confident you can schedule the sbrt in short order. But scheduling the proton therapy will take much longer.
May be no difference between the two because both equally kill cancer...but there is a world of difference in collateral damage and side effects with Proton being the clear winner. I appealed my insurance for Proton to the highest levels available. The final appeal acknowledged the reduction of treatment morbidity with Proton, and photon's much higher rate. But since both kill tumor equally well, Proton was refused, regardless of better quality of life results!
Read Survivor, Bob Markini's book:"You Can Beat Prostate cancer... 2nd edition available on Amazon. Excellently researched primer on the disease and various treatment modalities. Each modality is compared with pro's and con's.
I had to self pay, but Procure.com in Sommerset NJ gave the best deal in the nation. State of the art pencil beam and world ckass in every way! I don't regret my choice one bit! Evertything works acceptably well. Dry orgasm , and reduced intensity only noticeable side effect for me. 300mg
My understanding is that compared to traditional imrt radiation, proton doesn't wander and damage what it shouldn't.
But that sbrt is equally good at yhat
My PSA is 0.64 a month after SBRT of my prostate 38 Gy in 5 fractions and I am reasonably happy. Expecting further drop of the PSA.
What is your PSA doubling time?
My PSA doubling time was less than 3 months, CRPC and at PSA 1.4 only in my prostate was a cancer visible with the PSMA PET scan.
I doubt that they will be very keen to give you Pluvicto at this stage exept to experiment on you?
I myself would not do it and my MO would not recommend it, nor PeterMac in Melbourne.
Maybe in India? I am not a doctor but I can only see negatives in doing Pluvicto at this stage.
Maybe you could ask for Lutetium PSMA infusions with J591 in Perth Australia like MateoBeach did?
Why are you so keen on systemic radiation therapy? Are you hoping that you may don't need ADT after that? Maybe you could stay after Lutetium J591 only on bicalutamide? Can you contact dr Lenzo from Genesis Care in Perth, Australia for opinion? Maybe via video conference?
I am not recommending anything except to talk to more knowledgeable ROs.
I did have one doctor tell me here in the US that adjusted doses of Pluvicto cure me with this low volume disease. I wanna get off ADT as soon
You can't reduce the dose. Your doctor doesn't know. Ask an expert.
Here is the trial I'm referring to. clinicaltrials.gov/ct2/show...
Are you fulfilling all inclusion and exclusion criterias?
I just started with Zytiga 10 days ago
Who is your MO? If you don't have one, you should find one.
When I was first diagnosed i immediately had an appointment with an RO. I had to wait some time to get the appointment with an MO and that worked out good for me as my RO was very experienced in prostate cancer and he recommended to start early chemotherapy. You are missing your opportunity if you don't find quickly an MO. Where do you live? Some people here are going to see Tanya Dorff at city of hope.
yes, Tanya Dorf my doctor also
Why don't you ask her all these questions?
I did, but she was totally unfamiliar with anything to do with Pluvicto. She just advised me that it might be too toxic for low volume disease.
I would advise you the same without charging you anything.
The Lu-J591 monoclonal antibody ligand has advantages for low volume residual disease due to higher binding affinity and persistence. So for residual disease or micrometastasis when a prostate primary and all oligomets have been treated with MDT such as SBRT. Dr Lenzo is typically doing this one month after completing the SBRT. Two injections two weeks apart in Perth. This is not yet proven but a clinical trial is underway. So for now it is completely experimental. Good bone marrow function is required as this is impacted in the short term.
Who is your MO? Which hospital is treating you? Do you talk to them?
I have difficulty finding any information from my MO. I hope you are doing better in that regard with your oncologist?
I have not been excepted or even applied yet. But this is the company in Florida.
If you are willing to travel and can afford treatment abroad, you could consult with Dr Hartenbach in Vienna, about Lu 177 PSMA treatment with low volume disease.
m.hartenbach@minute-medical.com
Docrates - Finland
This group in the Netherlands does a Lu177 trial for low-volume hormone sensitive patients. You could contact them.
I am in the same situation, PSA 0.4 and rising. PSMA and FDG scan will be performed when PSA reach 1, req in Norway. Preparations are made for a BAT trial + Olaparib, 44% has good results. If it fails for me then the next option is lu177, pretty good results for low tumor burden, lymph nodes + a few bone metastases - results are better being chemo - naive. Treatments in Baku and New Dehli are approx. USD 5500, much cheaper than in Europe. They also offer the combo ac + lu.
Here are the results I was referring to: ncbi.nlm.nih.gov/pmc/articl...
Here is a reference on use in low volume disease in the mHSPC.
Hi Brother, it is amazing how some "helping" just send you down rabbit holes. Do they all talk like they are MD's? Throwing links and acronyms? I have a met in my L-2. I just had ( 5) cyberknife sessions and await results. It takes time to learn, a month or two. I am also waiting for Pluvicto. They think they see a met in my pelvis area on a lymph-node. Another PSMA scan is ordered before next steps. I dont ask opinions on here any more, it is maddening. Even the advice offered is no advice. Why do they bother?
If the PSMA PET scan shows good SUV uptake for Mets I would have Lu177 treatment on top of my radar. Ability to zap Mets with low side effects. But expensive if doing out of pocket.
I would have travelled to India for it, if had not been able to get on clinical trial (PR21 compareing Lu177 against docetaxel chemo for mCRPC). But Zytiga could keep your disease in check for a long while eg years.
I had one treatment of Lu177 at Bad Berka, Germany, shortly after diagnosis 3-1/5 years ago. I had taken Lupron, and Zytiga, but no chemo. My mets were mostly visceral, but one small one showed on a rib. I continued ADT for about 18 months, and have been off all treatment for nearly 2 years. My PSA remains undetectable.
My experience will not necessarily apply to anyone else, but I am glad that I tried the Lu177 early on!
Everything that I hear, the India facility is much less expensive than anywhere else, and comes with rave reviews from those who have gone there.
Good luck in your journey.
That’s terrific news. I am wondering if it’s as effective on cancer that’s so far only been to the bones?