Update: results of a recent PSMA PETscan

[mandrake248]

I wanted to share with you the results of my recent PSMA PET SCAN.

A quick synopsis of my history: an 18+ year journey: radical prostatectomy in August 2003. PSA following surgery was 0.1. It slowly rose to 0.4 over a period of 11 years. Following a more rapid rise to .6, I had salvage radiation in 10/2015. Unfortunately, it failed. PSA rose to 5.3 in 4/2019. Axumin scan indicated invasion In two adjacent lymph nodes on left pelvic wall. These were radiated in 6/2019 . Radiation was successful. The radiation was accompanied by a six month Eligard injection; This brought PSA to < 0.1. However, after recovery from the effects of eligard, PSA rose as follows: 0.6 in 6/10/2021 ————-> 1.0 in 9/18/2021 ———-> 1.9 in 1/3/2021.

The PSMA scan was done on 1/6/2021. It found numerous bad boys in lymph nodes; there was a small dark spot in each lymph node (lymph nodes were not enlarged), totaling 14 lymph nodes in all. All the infected lymph nodes ran along the para-aortic lymph track; there were 6 in the pelvic area, 7 in the abdominal area, below the diaphragm, and one very small spot in a single lymph node above the diaphragm, next to the esophagus.

No bone Mets were detected. (No spread to other organs as well).

It looks like my only option now is to go with ADT. However, I want to spend a couple of months trying some new supplements to see if I can stop or slow down the PSA rise. Over the years I’ve tried numerous supplements, but none have really worked. Following the advice of members in this group, I recently started taking IP6 + Inositol (27 g daily). I think I’m going to try vitamin C injections as well.

I continue to take bicarbonate daily, keeping the pH of my urine and saliva ~8.0 (Could keeping my body fluids at higher alkaline levels have played a role in preventing bone Mets?? —-> A published study with mice found that elevated pH levels diminished metastasis).

Any suggestions, recommendations or encouragement would be appreciated. Thank you.

Den

[tango65]

I was in a similar situation in 2016, with several lymph nodes mets in the pelvis and the retroperitoneum up to the renal arteries. I started ADT and I went to Germany and got treated with Lu 177 PSMA. One treatment made all the mets PSMA negative. I continue in ADT and 5 PSMA PET/CTs done after the treatment in Germany have been negative. I am having a new one next month.

[mandrake248 in reply to tango65]

Thank you for sharing your experience. I have wondered if I might be a good candidate for LU-177 treatment. Indeed, I hope they approve it soon in USA and that medicare has the good sense to cover it.

[tango65 in reply to mandrake248]

If approved you may not qualify because I believe it will be approved for people with mCRPC who failed treatment with the new antiandrogens and chemo. I believe they will base the approval in the Vision trial criteria.

[Hidden in reply to mandrake248]

Right. If you’re going to try it, you’d be well served to scrounge up the money and go elsewhere. Pronto. Some it works for, some it doesn’t

[MateoBeach in reply to tango65]

Wonderful results! 👏👏👍🏼👍🏼

[MateoBeach]

Sorry to hear that your PC has spread out of the pelvis and even above the diaphragm. Guessing your salvage Rt did not include the entire pelvic LN fields. Probably was not standard then.

[MateoBeach]

Continuing: probably the best treatment for extensive LN only disease may be 177Lu-PSMA. But since you are not castrate resistant yet you would probably have to travel abroad for it, unless you can find an open label clinical trial to get it. ADT, probably with an advanced AR drug, is probably SOC. But we know how that plays out. I would likely stack the Lu treatments with docetaxel chemo. ADT will probably be required and appropriate.

I would also request to start a bone protective drug denosumab or Zometa as this may delay progress to bone Mets even as it strengthens bones.

[j-o-h-n]

You're a magician.........you can do it...... Just Shazam it........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/15/2022 4:27 PM EST

[mandrake248 in reply to j-o-h-n]

You are right. I am a magician. I can make it happen. Thanks for that.

[slpdvmmd]

Upload scans to University of Heidelberg or similar institution through their internation offices. In my experience rapid response to whether Lu177 and or AC225 has a role. Must faster response than you will get in the US IMO. I would not delay.