Lu-177 Clinical Trial: Well, I've been... - Advanced Prostate...

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Lu-177 Clinical Trial

Stegosaurus37 profile image
31 Replies

Well, I've been accepted and randomized into the VISION Lu-177 trial. Great news as this was my last possible option. I know a lot of you are in/have been in this therapy. Two questions: how long before you see results and what were your side effect experiences?

Thanks, brothers, for all your help!

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Stegosaurus37
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31 Replies
ITCandy profile image
ITCandy

That is an unbelievable picture. I’m surprised PCa had the balls to mess with you.

Hope the trial is a tremendous success.

tango65 profile image
tango65

I had a response after the first treatment. I had the treatment in Munich in 2016. All the lymph nodes metastases were gone according to a Ga 68 PSMA PET/CT done 5 weeks after the treatment. I continue in ADT, PSA 0.4, no metastases in a Ga 68 done last January

whatsinaname profile image
whatsinaname in reply to tango65

Hi Tango65,

What did you take after Lu-177 ?? Was it Abiraterone or Enzalutamide ?? For long now have you been taking this ??

Thank you very much for a reply.

tango65 profile image
tango65 in reply to whatsinaname

Only lupron. It is going to be 32 months after the first lupron. Never had Zytiga or Enza.

whatsinaname profile image
whatsinaname in reply to tango65

Thanks a ton, tango65. Much obliged.

LivinginCuenca profile image
LivinginCuenca in reply to tango65

I’m thinking of Germany. Any chance that US insurance will cover anything? Blue Cross covered most of my hyperthermia in Germany a few years back

whatsinaname profile image
whatsinaname

I have just completed 10 days after my first Lu-177 infusion. Side effects ---slight pain where the mets are, very slight, went off with a Dolo (tablet). Results.... I am taking a PSA and other blood tests on the 8th of May, 15 days after infusion. My PSA was 16.02 before the infusion. Lets see what it is on the 8th of May.

The actual results will be known by the 10th of August, when I take my next PSMA PET CT scan.

tango65 profile image
tango65 in reply to whatsinaname

In Germany, they usually wait 5 or 6 weeks for measuring the PSA after a treatment. Do not be dissapointed if the PSA measured 15 days after the treatment does not show a decrease of your pretreatment PSA.

whatsinaname profile image
whatsinaname in reply to tango65

Absolutely correct, tango65, I completely agree.

lewicki profile image
lewicki in reply to whatsinaname

Hello, where are you doing this>

Thanks Ted

whatsinaname profile image
whatsinaname in reply to lewicki

Hi Ted,

I am an Indian living in Bombay (now Mumbai). Since, Lu-177 is being offered in Bombay, I am doing it in Bombay. The treatment is reasonably good and the convenience of doing it in ones home town is phenomenal.

Cheers, Ted. All the best to you.

NPfisherman profile image
NPfisherman

Best of luck...may you have great success and a very long remission from treatment...

Fish

Lyubov profile image
Lyubov

Wishing you the best!

Fairwind profile image
Fairwind

Please describe the treatment protocol..Injection ? How many? How far apart ? What are the risk factors compared to R-223 ? Best of luck to you ! Wishing you great success...

Fairwind profile image
Fairwind

What's the NCT number of the trial you are entering ? Location ?

Stegosaurus37 profile image
Stegosaurus37 in reply to Fairwind

NCT 03511664

Stegosaurus37 profile image
Stegosaurus37 in reply to Fairwind

Forgot - it's in Portland, Oregon.

Fairwind profile image
Fairwind

Please let us know how this journey unfolds.. The devil is always in the details..Again, Best Of Luck..

Stegosaurus37 profile image
Stegosaurus37 in reply to Fairwind

You'll know. Are you a sailor? "fair wind and a following sea."

Hey Stego , don’t know about it but congrats on getting in . That handle bar you’re holding says a lot . I have not petted a lion before . Fantastic Photo . Thanks🥳

j-o-h-n profile image
j-o-h-n

Nice Rug....

I hope you have a Mexcellent Cinco de Mayo!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/05/2019 1:35 PM DST

NOCanceros profile image
NOCanceros

Hello

A good news to do Lu177PSMA good luck- and by the way i was ready from 23 sessions of my treatment of my lymph nodes friday last week and the onkoloy dr. told me to take Bicatulamid 150 mg until october 2019.is it okej ...........!

Thanks

Stegosaurus37 profile image
Stegosaurus37 in reply to NOCanceros

I took that before my first chemo. supposed to do something to prevent a surge in something unpleasant. Sorry i can't remember more than that - it's been a year and a half and my memory isn't what it was.

monte1111 profile image
monte1111

What a great picture. No wonder your handle is Stegosaurus. My mustache went away after chemo. So I suspect this picture is pre chemo? All I have is a little fuzz that I refuse to shave. I can also see in the picture that you have a lot of testosterone. Way more than me. Really great to get into the Lu-177 trial. Hope it works for you, and that more of us get to give it a try.

Stegosaurus37 profile image
Stegosaurus37 in reply to monte1111

It is prechemo - I lost a lot of my 'stache in lupron and chemo but still have an OK one though nothing like when it was in it's glory.

Great news about the trial. Where have you been accepted and do you know if you got the Lu 177 arm? I am meeting with a Dr next week at Weill Cornell about Lu177 trial options. I am worried that if I get in the Vision Trial I will get the standard of care arm and that is really not an option right now. Have mets in lymph nodes and spine.

Stegosaurus37 profile image
Stegosaurus37 in reply to

I'll be in the trial in Portland, Oregon. I went down to Scottsdale to get tested for PSMA a week ago Monday and was randomized into the study drug (Lu-177) on Friday. That was quick. I'll get my first infusion next Friday. This is the last option for me. I've had all the standard stuff plus another clinical trial and none of it has worked. But I'm thinking positive and looking forward to it.

in reply to Stegosaurus37

Wow that was quick. Hope I have the same success. I too have exhausted every treatment available. I'm willing to travel so will see what happens. Was the Scottsdale PSMA test a trial also or is it an out of pocket expense? Thanks for the info. Wish you luck.

Stegosaurus37 profile image
Stegosaurus37 in reply to

The study arranged and paid for everything - airfare, hotel costs, all ground transportation by a driver - for me and my wife. It was a tight schedule but worked flawlessly. From Portland you go to either Scottsdale or Houston to get checked for PSMA. Don't know where you'd go from the East coast.

in reply to Stegosaurus37

That’s great. Going to Weill Cornell in NYC to see if I qualify. They do the scans there also. I was told they have a waiting list. Would be willing to go somewhere else if it’s immediate. Just afraid with my luck I would get the standard of care arm!

Stegosaurus37 profile image
Stegosaurus37 in reply to

That's what I was afraid of also. "Standards of Care" - we'll make sure the coffin fits.

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