PSMA miracle? : I was diagnosed with... - Advanced Prostate...

Advanced Prostate Cancer

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PSMA miracle?

29 Replies

I was diagnosed with Stage four in October 2021 (Gleason 9 in all sites). Been on Lupron and Zytiga with Prednisone since November 2021.

Numerous MRI's, CT scans, and bone scans over course of first year indicated multiple bone mets in pelvis, rib, elbow and shoulder. Also moderate to severe arthritis and neuropathy. The mets did not progress during the year.I have had periodic pain in pelvis, hips, legs, and right side, which have been severe for weeks at a time, and then almost disappear for weeks also.

My PSA had bottomed out at

. 04 for past three readings (nine months). But most recent one (November 9, 2022) had jumped to . 19.

My MO (late November 2022) ordered a PSMA-PET scan. I'm not scheduled see my MO until February, but my interpretation of the results is that God has intervened. The report said I only have one site in L4 vertabra, and it is rated 4 on 5-point scale (moderate). NO OTHER abnormal results on bones, in cranium, lungs, other organs, lymph nodes, or prostate bed! Needless to say, I am cautiously elated and praising God.

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29 Replies

I have a PSA of 0.17, but the sensitivity of a PET scan indicates that nothing will appear. Before rising to 0.5 there is probably a waist to have a scan.

maley2711 profile image
maley2711 in reply to

I think you answered the question..but let's hope that PSA never reaches 0.5, let alone higher where the sensitivit increases even more.....and the accuracy still limited by metastasis size, no matter the PSA...right?

in reply tomaley2711

The other way around, sensititvity rises with increasing PSA

maley2711 profile image
maley2711 in reply to

reread my comment????

in reply to

I'm assuming that the PSMA scan would show my original mets if they were still there. So what I see as miraculous is those original mets are gone, except for one. Of course I may be misinterpreting the report. Haven't seen MO yet.

GP24 profile image
GP24 in reply to

Hormone therapy makes the mets shrink in size. So they may have become too small to be visible for a PSMA PET/CT at a PSA value of 0.19. A PSMA PET/CT is more sensitive at higher PSA values. I had to wait for the PSA value to get to 3.0 ng/ml until mets became visible.

in reply toGP24

Thank you. I'll take the shrinking!

in reply toGP24

The sensitivity rates of PSMA PET/CT according to PSA levels are 55-60% (0.2-0.5 ng/mL), 72-75% (0.5-1.0 ng/mL), 93% (1.0-2.0 ng/mL) and 97% (≥2.0 ng/mL). 

This is why I will wait until I have 0.5. I am thinking of having a luPSMA treatment and it works best with very low tumor byrden in the lymph nodes only. If nothing shows up I do another at 1. If all the lesions show medium to high SUV uptake I will be informed of a potential good outcome.

Fightinghard profile image
Fightinghard

This can and does happen. praise God and celebrate your blessing.

Marshb52 profile image
Marshb52

you have been blessed and rightfully give praise. My PSA went to undectable and stayed there for months. I’m taking AVEED and trying to return my body to normal. We keep an eye on PSA. Congratulations and best wishes for continued blessings

bglendi53 profile image
bglendi53

Sounds like you're doing quite well. I also had Gleason 9, and have went through Erleada, Xofigo, and Zytiga. Now on Chemo with one session behind me. Last PSA was 227, so if the chemo doesn't work, I don't think there is much left for me to try.

in reply tobglendi53

Well, you have lu/acPSMA. Did you have Petscan lately?

bglendi53 profile image
bglendi53 in reply to

Had one in July, but when my PSA rose from 24 to 92, the MO wanted another one and insurance said no. So I had a bone and CT Scan.

in reply tobglendi53

I hope your status will improve!

in reply to

I haven't had a PET scan. Have had several CT scans, MRI's and bone scans.

Please tell me what lu/acPSMA is?

GP24 profile image
GP24 in reply to

That is an abbreviation SHH696 made up on the fly. It refers to Lu177 and Ac225 nuclear therapy. Here is an article discussing this: urotoday.com/conference-hig...

in reply toGP24

I understand the therapy. I just don't know why SHH696 said I HAVE it.

in reply to

There must be a misunderstanding here? Are you refering to my comment that we as pCA patients have both luPSMA and acPSMA in the toolbox?

in reply to

LOL, Yes, I misunderstood your comment "Well, you have lu/acPSMA." I thought that was an acronym for some pc variant that I was unaware of!

in reply to

lutetiumPSMA is a beta emitter that latches on to the antigen presented on the surface of the cancer cells. Penetrates 1.6 mm and induces DNA damage. actinumPSMA is an alpha emitter 10 times stronger and penetrates much shorter, but creates much more damage. Unfortunately our salivary glands also produces PSMA, a bad side effect of acPSMA is Xerostomia - dry mouth. Both therapies can be very effective IF ALL you lesions show high density of PSMA. A PET scan will reveal this. They measure the density in SUV, the number should be above 10, A combo of low dose ac and high dose lu can be very effective under the right circumstance.

in reply to

I understand the therapy. I just don't know why you said I HAVE it.

So sorry that your stats aren't so good, but continue every treatment you can find. And remember the awesome power of prayer!

Ian996 profile image
Ian996

I would keep your God out of this. God doesn't do much good when you stand back and look at the world we live in

in reply toIan996

That's such a sad thing to say. God created the world, and He can correct it in any manner He chooses.

jfoesq profile image
jfoesq

How about some praise for the scientists who developed the treatments and the doctors who implement them.

Ian996 profile image
Ian996

trust in science Science is responsible for all the treatments ,drugs and scans that we are subjected to while fighting this terrible disease The truth is if you have stage 4 metastatic castrate resistant prostate cancer Nobody gets out alive. If you find comfort and solace praying to your God that is clearly your choice . I am putting my faith in science

in reply toIan996

Thank goodness I'm not castration resistant (yet).

I fully appreciate and cautiously trust science. But I can FULLY trust my God, who created everything that science is based on.

I am awed by how every single atom in the universe works separately and together to prevent chaos. It's impossible that just happened.

Ian996 profile image
Ian996

I was diagnosed with PC on my 65th birthday Nov 2018, a Dec biopsy proved out to be gleason 9 my PSA was 22 I started Zoladex and the 28 rounds of EBRT in may/june 2019

PSA dropped to 0.1 but gradually climbed up to 14. A PSMA Pet scan show tumors on L3 T9 and T10. I had SBRT at UCLA in June 2021 stayed on Zoladex PSA started to rise again in Jan 2022 and was doubling every 4 weeks. I had another PSMA Pet scan in June 2021 which showed 2 more tumors L4 and upper right lung hilum Started Xtandi in July 2022 PSA has now dropped to 0.27 still to high considering the drugs I am taking. Looks like another PSMA PET scan in January 2023 and the decision time. More SBRT? who knows

but I can guarantee your God isn't going to change any outcomes. I mean really how well god doing with mass shootings of children

GSDF profile image
GSDF

Praise God indeed dear brother! Nothing is impossible with Him!

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