Advanced Prostate Cancer
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Intro- New to Group

Intro-  New to Group

My prostatectomy happened back in November 2011, which indicated an 'out of the box' (extra-capsular extensions) Gleason Scale 9 condition. The following summer, I had follow-up external beam radiation, but rising PSA levels still indicated circulating cancer cells (no shown metastasis). In Summer, 2015, I entered a clinical trial which placed me on both Lupron and ARN-509 (Apalutamide, an Androgen Receptor Antagonist). This almost instantly brought my PSA down to undetectable levels. Unfortunately, 6 months into the treatment, I suffered a heart attack, and later a TIA incident that scared me off the trial one month early (Lupron may have been the culprit; Firmagon doesn't seem to occasion the same heart-health concerns). The good news has been undetectable PSA for over a year and a half, post-clinical trial. But now my PSA numbers are doubling again rapidly (though without a prostate, still relatively low). Given the option of the new PSMA and similar powerful scans, I'm wondering if a few small mets are found on my spine or elsewhere (likely), might I be able to go with Cyberknife "spot welding" instead of having to go back on ADT (Hormones)...?? What do you think? What's been you guys' experience?

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Sorry to hear your disease is progressing. I was in a similar situation and I got a Gallium 68 PSMA PET/CT scan . The scan showed a multitude of metastasis in lymph nodes in the pelvis and abdomen.

I was started in ADT but I decided to try treatment with Lutetium 177 PSMA in MUnich, Germany. After 1 treatment the metastasis were gone (confirmed by a second GA 68 PSMA study). PSA went from 10 to 0.05, now is 0,09 and all therapies were stopped in Novemeber 2016.

UCLA has a clinical trial to do the GA 68 PSMA PET/CT study and they also have a study for Lu 177 treatmente but it is for CRPC. Doctors in Germany are very opened to accomodate patients who want to have the LU 177 treatment. The cost is around 12 K (euros).

Perhaps you should discuss with your doctor to have a GA 68 PSMA study and if positive for metastasis, start ADT with degarelix and casodex and get into a trial of Lu 177 or go to Germany for this treatment which is highly effective in many patients.

drive.google.com/drive/fold...

Anything, please let me know

Good luck and best wishes

Raul

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Fascinating. I'll look into what you're talking about. I'm still castrate-sensitive, and am not familiar with LU 177.

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Most people are not familiar with Ga 68 PSMA PET CT or with Lu 177 PSMA treatment. Oncologists and urologists in the USA are keeping the secret very well. These techniques has been done in Europe (Germany, Netherlands, Austria etc) for years (more than 10).

If you are interested and you think that you will like to learn more I will recommend to do a search in Pubmed.gov for prostate cancer and lutetium and read the summaries and articles you can download. There is a lot of science behind this treatment.

ncbi.nlm.nih.gov/pubmed?ter...

Anything, please let me know.

Good luck.

Raul

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Dan

Ideally, I think you'll want to consult with an expert radiation oncologist who has experience in treating "oligometastatic" disease, i.e., cancer that is metastatic but concentrated in only one or a few spots, not spread all around the body. If he thinks you're a good candidate for the treatment, then you'll want to move as quickly as possible to get the scans and, if they indicate oligometastatic disease, radiate them immediately before they can spread further into new areas.

Will that work? I think it might work but there's a good chance that it won't. However if the scans look good and only show one or a few metastases, then there is a chance that it will work and you'll get a cure or a durable remission. The reason that I think the odds are against this is that, if you have metastases that are big enough to be detected on a scan, you may very well also have metastases that are too small to be detected and will continue growing. But I don't think that should deter you from getting the scan. Assuming that you have metastases and they're not in places (like the brain) where radiation is very risky, the possible reward might greatly outweigh the risk.

I think that Raul's suggestion concerning Lu-177 treatment is also a very good one. If your cancer produces significant amounts of PSMA, and many cancers do, then it might work very well even if you have small amounts of cancer in many places. You might investigate that in parallel with your investigation of scanning + radiation.

You didn't say whether you are still on firmagon or on apalutamide. I'm guessing that you're still on firmagon but not on apalutamide. It's possible that you can get some more months, or maybe even years, without PSA progression from apalutamide (if you can get it), or Zytiga or Xtandi.

Personally, I think we're reaching a turning point in prostate (and other) cancer treatment. The PSMA scanning and treatment with Lu-177 are among the first of the new "targeted therapies" - therapies that bind a cell killer like Lu-177 or one of the chemotherapy drugs to molecules that seek out cancer cells. Even more advanced treatments are in development that use other cancer killers besides Lu-177 and other cancer trackers besides PSMA.

Your job now is to stay alive for another 3-5 years. If you can do it, I think there's a good chance that more treatments will become available that will give you more years after that, during which still more treatments will become available, and eventually a cure. So I think I'd look very seriously at the spot radiation and the Lu-177 treatments, and at the advanced ADT drugs if needed after them.

Best of luck.

Alan

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AllenMyer, Thanks from all of us!!!! Keep up the good work Sir!

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Thank you! Helpful.

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Hey ! Seattle Dan , nice background. Those heart conditions are a threat and a worry to us all .. Glad you made it.. I’m sure you’ll get the answers you look for here. Just wanted to say “ Welcome, to a source that can empower you” This stuff never stops. As you know we fight this or we die. We’re all going to die, we know that, but let’s do the best to live and find enjoyment in every ( even the miserable) day. Take care !

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