fast-rising PSA: I’m in the control... - Advanced Prostate...

Advanced Prostate Cancer

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fast-rising PSA

NewGame profile image
13 Replies

I’m in the control group for the new Lutetium-177–PSMA-617 study re: use of Lutetium in the early stages of treatment for metastatic disease, pre-chemo. I was diagnosed 3/23 - high volume/high risk, and have been on Firmagon and Abiraterone plus pred. In Sept my PSA started to rise, with testosterone remaining negligible.

August 0.06 (nadir)

Sept 7. 0.1

Sept 21. 0.14

Oct 18 0.23

Nov 28 0.6

Jan 3 1.5

Jan 18 2.57

Feb 12 6.03

I see my oncologist tomorrow. Anyone else been in a situation with similar numbers?

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NewGame
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13 Replies
JL1955 profile image
JL1955

what is the name of study? What hospital?

NewGame profile image
NewGame in reply to JL1955

Weil Cornell in NYC

Phase 3 study comparing Lu-PSMA-617 in combo with standard of care, vs standard of care alone, in adult males with metastatic hormone sensitive prostate cancer

NewGame profile image
NewGame in reply to JL1955

Weil Cornell in NYC

Phase 3 study comparing Lu-PSMA-617 in combo with standard of care, vs standard of care alone, in adult males with metastatic hormone sensitive prostate cancer

PC-22 profile image
PC-22 in reply to NewGame

Hello, I’m thinking the trial you are on is the PSMAdditions trial. I have been on it since January 2023 and doing well so far. I was given the isotope immediately and had my 6th and final injection on August 17th. For now, I go back every 12 weeks for a full body bone scan and 2 CT scans. 1 for chest area, 1 for abdomen area as they are testing for disease progression but so far my PSA is considered undetectable. You might want to ask about crossing over as soon as possible.

NewGame profile image
NewGame in reply to PC-22

Thanks for the note. Were the side effects from the treatment manageable? Are you in NY? I have my scans this Thursday - bumped up a month early due to very rapid PSA rise, recent weight loss, and severe fatigue. Hoping that all is well and no progression - but reassured the trial is there if needed. Crossover has already been discussed if necessary.

PC-22 profile image
PC-22 in reply to NewGame

Side effects are real but manageable. The isotope affects your salivary glands so dry mouth and things don’t taste the same. Severe fatigue and increased bone pain for a while. It’s been 6-months since last treatment, and dry mouth is better as is overall bone pain. Still always feel fatigued but it might be due to Lupron and / or Apalutimide which is ongoing.

Not in NY. I’m in Albuquerque NM but being treated at Mayo Clinic in Phoenix Arizona 500 miles away. So 2023 was pretty rough and expensive as I made approximately 25 round trips but I’m doing well so it’s hard to complain.

Hopefully they get you on the treatment ASAP. As Someone mentioned, it appears you may no longer be considered hormone sensitive which is a shame. Had they given Lutetium to you in the first place you probably would still be sensitive even as I believe I am.

If they do put you on it, please follow the directions to drink lots and lots of water. You can’t get too much as it is critical that you flush it out of your system as quickly as possible so as not to damage Kidneys or Bladder. In addition to lots of water and such I also ate lots and lots of various soup as it’s another way to get liquids in you.

My PSA as of last check was .02

If you get a chance to google PSMAddition or just Additions trial for short you will find a number of articles or videos that mention it in regard to the trial

NewGame profile image
NewGame in reply to PC-22

Thank you - I appreciate the info

Tall_Allen profile image
Tall_Allen

Does the trial allow you to cross-over to Pluvicto?

NewGame profile image
NewGame in reply to Tall_Allen

Yes it does.

GP24 profile image
GP24

When you get imaging it will probably show that the tumor has progressed. Then you usually may cross-over to get Lu-PSMA-617 now.

ttytle profile image
ttytle

Not to go into my extensive bio here, but I had rapid doubling of my PSA from 1.6 to 2.93 in 5 weeks. PSMA scan revealed 4 distant mets two to bone (oliometastatic). Here in the US I was not a candidate for the trials as I was still hormone sensitive. I went to Germany were I received two Lu 177 infusions two months apart. At the time of the second infusion I was told that there had been a “substantial decrease” in my metastasis. I had the expected mild SE of dry mouth, nausea and transient decreased GFR (kidney function). My subsequent history is complicated by now being on hormonal therapy, but my PSA is currently undetectable. I might add that my German translator who seen the PSMA images of many previous patients told me the number of my mets were initially far fewer than any she had seen before in other patients.

MateoBeach profile image
MateoBeach

You are no longer hormone sensitive but castrate resistant. Sorry. You have already failed SOC for that. Try to get the Pluvicto treatment straight away and not in the control group. Even start the docetaxel chemo if that is what needed to move forward. Perhaps consult with Tagawa at Weil Cornell.

NewGame profile image
NewGame in reply to MateoBeach

Is Tagawa your Dr?

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