Getting first dose of LU177 next week... - Advanced Prostate...

Advanced Prostate Cancer

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

joeguy profile image
39 Replies

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.

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joeguy
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39 Replies
Seasid profile image
Seasid

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

Faith1111 profile image
Faith1111

keeping you in my prayers for a great response

joeguy profile image
joeguy in reply toFaith1111

thank you Faith

RyderLake1 profile image
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 profile image
joeguy in reply toRyderLake1

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 profile image
RyderLake1 in reply tojoeguy

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 profile image
Ollie1948 in reply toRyderLake1

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

joeguy profile image
joeguy in reply toOllie1948

it was about 8 days after scans at UTSW

RyderLake2 profile image
RyderLake2 in reply toOllie1948

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 profile image
Ollie1948 in reply toRyderLake2

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

CAMPSOUPS profile image
CAMPSOUPS

Im rootin for ya!

joeguy profile image
joeguy in reply toCAMPSOUPS

thanks

Seasid profile image
Seasid

Can you ask for a liquid biopsy?

joeguy profile image
joeguy in reply toSeasid

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

Seasid profile image
Seasid in reply tojoeguy

Yes, actionable mutations.

joeguy profile image
joeguy in reply toSeasid

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

Seasid profile image
Seasid in reply tojoeguy

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 profile image
joeguy in reply toSeasid

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 profile image
Seasid in reply tojoeguy

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 profile image
joeguy

thank you

larry_dammit profile image
larry_dammit

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

joeguy profile image
joeguy in reply tolarry_dammit

I will, thanks

hopeful1956 profile image
hopeful1956

Wishing you the best outcome!

joeguy profile image
joeguy in reply tohopeful1956

thank you

MateoBeach profile image
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 profile image
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 profile image
nextphase

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

Jmr11820 profile image
Jmr11820

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

joeguy profile image
joeguy in reply toJmr11820

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 profile image
Jmr11820 in reply tojoeguy

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

joeguy profile image
joeguy in reply toJmr11820

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 profile image
Jmr11820 in reply tojoeguy

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 profile image
joeguy in reply toJmr11820

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 profile image
Jmr11820 in reply tojoeguy

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

Blueslover profile image
Blueslover

Good luck Joeguy

slpdvmmd profile image
slpdvmmd

I wish you the best.

discgolf1 profile image
discgolf1

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

joeguy profile image
joeguy in reply todiscgolf1

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

discgolf1 profile image
discgolf1

Thanks for info

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