seeking feedback on my case

[tmscat]

hi, hoping Tall_Allen and anyone else may have some thoughts......

I posted several mos. ago after being diagnosed with distant only metastatic -- GL7, low PSA, thought to be contained and headed for surgery, but asked for a PSMA -- showed 8-10 lesions in ribs and scapula. Mostly low SUV. Diagnosis changed from treatable to terminal.

Got radiation for the prostate in July. Orgovyx for 5 mos. Testosterone has been <20; PSA undetectable.

Just got an updated PSMA, which still shows all of the lesions, with slightly lower SUV.

So, question is, are the lesions real and not responding completely to the Orgovyx? Or is this artifact? What to do next?

Anyone else have experience with this? Will greatly appreciate your thoughts/experiences.

thank you!

[tmscat]

one more note......scan shows no sign of sclerotic process on the lesions, which Dr. says normally this happens if the SUV declines.

[Justfor_ in reply to tmscat]

From a trial for the approval of PSMA 1007, for which concern exists regarding false bone positives, only 1 out of 11 had a confirmed bone metastasis. There was no info on the confirmation methodology only that SUVmax was less than 7 for all cases.

[Tall_Allen]

Did you get a second opinion, as I suggested? What is the point of getting repeated scans when you didn't get your original scans read by an expert?

[tmscat in reply to Tall_Allen]

Please understand, there are many circumstances that have led to today---would take too long to detail.

When you say not read by an expert, I'm assuming you mean one of the people you listed.

I found it's not easy to get an appt. in a reasonable/quick amt. of time w/"the best". And can't get telehealth appts., so getting the scans read by the best became a difficult proposition.

I tried to get a large radiology practice locally to provide 2nd opinion/read the scans and they wouldn't. I did get a second opinion on the scans/situation from 4 additional Drs. in my area. Two said to wait a couple of months and repeat the scan.

I do have a long-awaited appt. at MDA end of Nov., but proceeded with the 2nd scan to see what it showed.

Time was becoming an issue, so I focused on getting treatment for the primary cancer.

I was just wondering if you/anyone else has heard of/experienced these circumstances. I'm curious as to what course of action/treatment others in this situation may have been advised/taken.

thank you.

[Tall_Allen in reply to tmscat]

I gave you several specific names of top radiologists who I know give second opinions: Steven Rowe at Johns Hopkins, Thomas Hope at UCSF, Andrei Iagaru at Stanford, or Jeremie Calais at UCLA. Did they turn you down? Sorry, I don't understand what you are talking about, and can't help you beyond that.

[Nusch in reply to tmscat]

A second read from a TA listed expert is essential. I can just tell you, what I do: In certain cases I always get a second read from Mayo Clinic in Rochester. I send a CD with all scans to Mayo and they check and provide the findings electronically. That’s fast and easy.

[maley2711 in reply to Nusch]

does Medicare always cover those opinions?

[Nusch in reply to maley2711]

Sorry, I don’t know, living in Europa. But I paid around $ 500,-.

[jackcop in reply to maley2711]

Yes.

[NecessarilySo]

Just some thoughts. I had one lower back left rib lesion years ago that I could feel pain when touched. I believe it migrated from a lymph node. Scan-directed biopsy was recommended six or seven years ago. However, upon taking scan, radiologist could not find lesion, so biopsy was never performed. Nevertheless, mild rib pain continued for years, until finally in past year it seems to have vanished after I self-treated with magnets, heat, and lycopene. (Magnets subdivided it, then hot showers and frequentV8 plus ADT seem to have rid me of it). I think radiological analysis is tricky stuff, especially for small lesions. Best sign of cancer mets imo comes from touch and feel, at least in my case. I have eliminated many suspected mets without radiation or chemo, just Lupron, magnets, heat and lycopenes. Does it work for others? I have no idea.

[anonymoose2 in reply to NecessarilySo]

What is V8?

[bldn10 in reply to anonymoose2]

Bloody Mary base. Never hurts.

[addicted2cycling in reply to anonymoose2]

anonymoose2 wrote - " What is V8? "

bldn10 wrote - "Bloody Mary base. Never hurts. "

Don't forget that there's always Detroit muscle as in -- 426 Hemi, 429 Boss semi-hemi, 454 GM BB

[j-o-h-n in reply to addicted2cycling]

And in a Jewish monastery at 11:59 PM, it means: "So you vant to hear bells Harold? Just V8 a minute, I'll show you"......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/04/2023 11:18 PM DST

[NecessarilySo in reply to anonymoose2]

V8 juice is a vegetable juice made from 8 types of veggies. It has a significant amount of lycopene, which helps the immune system to kill prostate cancer cells.

healthbenefitsofeating.com/...

[anonymoose2 in reply to NecessarilySo]

Do you like regular or low sodium?

[addicted2cycling in reply to anonymoose2]

Spicy and Low Sodium -- Just finished off a bottle 👍👍

[anonymoose2 in reply to addicted2cycling]

Sounds wonderful!

Does anyone know if you can make lycopene into a gel or cream and apply it to areas the cancer is growing? Didn’t see anything on Amazon 🤷

[NecessarilySo in reply to anonymoose2]

I'm experiencing high blood pressure and therefore prefer low sodium.

[anonymoose2 in reply to NecessarilySo]

Smart 👍

[GP24]

Orgovyx will stop the tumor growing further and make the mets shrink a bit. Therefore you get a lower SUV now. But Orgovyx cannot destroy them all. A Pluvicto therapy could destroy the mets if you respond well to the treatment.

[dhccpa]

What do you consider low vs. high SUV? Thanks