Getting first dose of LU177 next week as part of SPLASH trial

[joeguy]

I will be returning to UT Southwestern in Dallas next week to receive my first dose of LU177, and not a moment too soon. I have stopped responding to the combination of Orgovyx/Darolutimide, and PSA doubling time is at about 3 weeks. I will have a blood draw before treatment, and it will be the first PSA check in about 6 weeks. I am expecting PSA to be around 40 - 50. Scans a couple weeks ago also show mets have spread from lymph nodes to multiple bones in ribs, hips and spine, and all lymph node mets have increased in size. Hoping I am one of the lucky guys that get a really good response from the LU177, but I understand there is also a chance it may do very little. Im not real clear on what the possible OS benefit might be, but I heard with Pluvicto in the Vision trial, it only added a few months. I will update with progress through the trial.

[Seasid]

Could you fill out your profile so it is easier for us to understand your specific situation and to respond more appropriately?

[Faith1111]

keeping you in my prayers for a great response

[joeguy in reply to Faith1111]

thank you Faith

[RyderLake1]

Hello,

Lots of folks on this forum interested in your trial because it opens the door to receiving Lutetium BEFORE chemotherapy which was one of the restrictions of the VISION trial. I too have been accepted into the SPLASH trial but have yet to find out which Arm I am going to be placed on. I should get that information mid-November. I was told only 400 men have been put on this trial world wide and only ten from the area where I live. I truly feel humbled to be so fortunate. Please keep everyone here in the loop. Many people are interested in your story! Good luck!

[joeguy in reply to RyderLake1]

yes, I feel like we are very lucky and in a very elite group with only 400 world wide….. not sure I have ever been in an elite group before. It sounds like they will be doing either scans of blood draws monthly, with treatment every 8 weeks for 4 doses. I will update progress each month

[RyderLake1 in reply to joeguy]

Hello Joe,

I live in Canada but let's stay in touch. The SPLASH trial is being run by the BC Cancer Agency in Vancouver which is about 110 kms west of where I live. It means frequent trips into Vancouver for my wife and I but fortunately our daughter lives in the city so we have a place to sleep without having to pay for a hotel. It sounds like you are slightly ahead of me in the program so I would like to hear about your trial experience. I will find out which Arm I am on in mid-November and receive my first infusion (if on the Lutetium arm) in December. Good luck!

[Ollie1948 in reply to RyderLake1]

have you complete your scans? how long after that did it take to get your Arm (A or B) assignment?

[joeguy in reply to Ollie1948]

it was about 8 days after scans at UTSW

[RyderLake2 in reply to Ollie1948]

Hi Ollie,

We are going into Vancouver to see the clinical trial doctor today. Will see her first thing tomorrow morning (Thursday). I should know more by the end of the week.

[Ollie1948 in reply to RyderLake2]

Hi, have you complete all scans (bone, thorax, PET) ?

[CAMPSOUPS]

Im rootin for ya!

[joeguy in reply to CAMPSOUPS]

thanks

[Seasid]

Can you ask for a liquid biopsy?

[joeguy in reply to Seasid]

I’m not sure what a liquid biopsy looks for……. Is it for potential mutations?

[Seasid in reply to joeguy]

Yes, actionable mutations.

[joeguy in reply to Seasid]

yes, they drew blood for the Gradient test but my insurance is being hesitant to approve it

[Seasid in reply to joeguy]

Can you pay yourself? Than you may don't need to fry yourself with radiation plus you may need that information if it fails what you plan to do now?

You only have very limited numbers of radiation treatments.

[joeguy in reply to Seasid]

I could but I’m not expecting it will find any mutations.... the same test 3 years ago found nothing useful. May need to biopsy a tumor at some point

[Seasid in reply to joeguy]

I agree with you. I am in a same boat with you.

Maybe we should push ourselves now after 3 years?

Would it be good? And have a biopsy? It cost money.

[joeguy]

thank you

[larry_dammit]

please keep us informed of your progress Warrior. We’re all holding our breath❤️🙏🙏🙏

[joeguy in reply to larry_dammit]

I will, thanks

[hopeful1956]

Wishing you the best outcome!

[joeguy in reply to hopeful1956]

thank you

[MateoBeach]

hoping you are one of the super responders (about one in three), Joe. Very disturbing progression. Did you have to wait long to go through the process and get a slot for the Pluvicto? 🤞

[joeguy]

Mateo,

It is actually a cousin of Pluvicto (PSMA [Lu-177]-PNT2002) and it has taken about 3 months to get set up in the trial, and complete all scans and such. But I agree, progression has really taken off in the last few months. If I get unlucky and dont respond to the LU177 treatment very well, we can still try Zytiga, or even a short course of Xtandi if I can avoid the cardiac toxicities I had last time I took it. But, they tell me once you fail one of the second generation hormonal drugs, there is only a 10% chance any of the others will work. I suppose after that, I am left with chemo as the only other option. Hoping to get at least a couple extra years from Lu177 and chemo.

[nextphase]

Keep that positive attitude every day. Good luck to you with your trail.

[Jmr11820]

Man, here’s to great results! Did you run out of options in Tulsa or did you switch to O U.

[joeguy in reply to Jmr11820]

Im still going to USO and Oklahoma cancer specialists in Tulsa, but I wanted to give Lu177 a shot before chemo, so i got into the SPLASH trial down in Dallas. So far I really like the team down there, and they have a brand new cancer wing that just opened up this month at UT Southwestern.

[Jmr11820 in reply to joeguy]

just wondered if the Tulsa folks helped you get set up at UT SW or did you reach out on your own?

[joeguy in reply to Jmr11820]

Actually Oklahoma Cancer specialists havent done much of anything other than do labs ever few months. USO is good, but their options are kind of limited to hormone therapy. I sought out, and got enrolled in the SPLASH trial on my own.

[Jmr11820 in reply to joeguy]

I think we talked about this, there’s a doc at USO named Cole Davis who’s a urologist and also did a fellowship at UCSF in Uro. Oncology. Did you ever consult with him. Just curious cuz I have a feeling I’ll be needing a medical oncologist, not for a while hopefully. Good for you for getting into the trial. Seem the locals would’ve helped you do that.

[joeguy in reply to Jmr11820]

My uro at USO is Dr Doyle, and I really like him. He also did my RP surgery back in 2016. My onc at Oklahoma cancer specialists is Dr Cole. Now my uro tells me that Dr Cole is the best guy over at the cancer center for prostate cancer, but I just dont feel like he is a good match for me. This is another reason I am glad I got in the trial, I get a new oncologist at UT Southwestern, and so far Im very impressed with him.

[Jmr11820 in reply to joeguy]

Good deal, keep us posted. You have a lot of friends here.

[Blueslover]

Good luck Joeguy

[slpdvmmd]

I wish you the best.

[discgolf1]

I am confused why this is a Trial. Pluvicto is FDA approved. I start my treatment in two weeks!

[joeguy in reply to discgolf1]

it’s a slightly different formulation of Lutecium and its being done before chemo, so totally different.

[discgolf1]

Thanks for info