Lu-177 for the win!!

[CJ4J]

When every treatment for my husband was failing, my husband was fortunate to be selected for the Vision trial and receive Lu-177.

After receiving 3 treatments all known cancer mets have been resolved according to his Choline petscan. He had numerous Mets, hips, sacrum, lymph nodes, skull and spine. All resolved, and we are doing the Happy Dance 🕺💃!! His PSA is .4 and we are still praying it gets to zero.

He has had no side effects and feels great!

We were told these amazing results aren't the case for everyone and we feel so grateful that this worked for him 🙏.

Why does this work for one person and not the other, no one knows at this time. How long will it be effective? Still unknown.

We asked our trial nurse why has this worked for him, is it because he eats a very clean diet, takes supplements and uses essential oils. The answer was no. Is it because we have lots and lots of people praying? Maybe 😁

Thank you all on this site, for helping us learn and fight this beast. Stay strong my friends and don't give up!!

Picture is of Dr. Kwon and my husband after getting this great news. He said your one of the stars in this trial. 🌟🌟🌟

[jdm3]

That's fantastic! Happy news. Congratulations and I hope it only gets better for you from here.

Josh

[CJ4J in reply to jdm3]

Thank you 😊

[CantChoose]

Congrats! It's hard not to immediately fly to Germany and pay cash out of pocket when I hear these types of results.

Anyone know when the Vision trial reports out or the percentage of responders? Wondering about the other isotope treatment as well.

[CJ4J in reply to CantChoose]

Flying to Germany was the next option if he was not selected.

We were told the results will take awhile, maybe even years to compile as the study is still on going.

[AlanMeyer]

Outstanding response!

The cause of your husband's excellent response is that he has a form of the cancer that "expresses" (i.e., produces) lots of prostate specific membrane antigen (PSMA). The radioactive Lu-177 atoms are each attached to an antibody molecule that binds to PSMA and nothing else. As these compound molecules (antibody + Lu-177 atom) circulate through the blood stream, each time one of them comes in contact with a PSMA molecule on the surface of a prostate tumor cell, it attaches to it. As the Lu-177 goes through radioactive decay, it emits an electron which zaps the nearby cell, damaging or killing it.100 years ago this kind of cancer treatment would have been unthinkable. I don't think that science had progressed to the point that anyone would have understood how this could work. 50 years ago I think it might have been understandable but no one would have any idea of how to make it happen. 20 years ago I think the scientists would have had the theory about how to make it happen, but hadn't yet figured out the practical details. Now, we're actually doing it, and our understanding of how to do it better and better keeps advancing. Our children, their children, and our children's grandchildren, are going to see cancer as an increasingly treatable and non-threatening disease.

Eventually, your husband's cancer may come back. If and when it does, I'm hoping that he'll be able to get another Lu-177 infusion that will knock it back again. And in the meantime, other new treatments will also become available.

So, thumbs up! And best of luck to you.

Alan

[CJ4J in reply to AlanMeyer]

Thank you Alan for explaining it so well.

[Unusualmint45 in reply to AlanMeyer]

I'm learning something everyday on "Healthunlocked" thanks Alan and to all!

[GP24]

I think the exceptional response is caused by the Xtandi which you took just before the Lu177 treatment. This is an antiandrogen and these are suspected to increase the PSMA expression of the tumor cells. The increase in PSMA expression makes the Lu177 therapy work better. In this trial they report:

This suggests the potential for “flares” of increased PSMA uptake on initiation of AR-targeted therapy, which may be used as a “priming” effect that can increase the diagnostic yield of PSMA PET and the therapeutic payload with PSMA-targeted RLT.

euoncology.europeanurology....

[CJ4J in reply to GP24]

That's a good point and we know that his PSA was lowered on the Xtandi just before the 1st Lu-177 treatment.

[CJ4J]

Kwon has been very helpful in suggesting this study and directing him to qualify. He is also very personal, lots of fun stories. There is so much to learn about Gene Mutations. What do you mean by early believer and user?

[Ldb01]

So so happy and excited for you ! My hubby is on an Actinium 225 trial and Zytiga. PSA is now 2 and he has had two ACT injections since January. Mets in spine, skulland ribs are gone. Tumour has shrunk and cancer in pelvic bone is less. One lesion left on femur. Continuing with injections but we are celebrating !!!!!

[CJ4J in reply to Ldb01]

That's awesome as well!!

[Unusualmint45]

🙏🙏Thank the Lord. Great news!!

[CJ4J in reply to Unusualmint45]

He is able!!

[CJ4J]

I agree 😁

[BRCA2MX]

You and Hubby are major winners in the early development of cancer "theranostics." Combo diagnostic (C11 choline PET scan and Ga68 PSMA targeting) with Lu-177 riding on the diagnostic targeting agent directly TO and treating ("cell-killing") the bad guys. Lu-177 and Act-225 are early tools of this work in the US. [Yes, Germany and Australia, at least, are way ahead of us--our regulatory gates are much more demanding. Or maybe "protective' may be more politically correct...]

I'd encourage Genetic Counseling (just ask for it, it's now Standard Of Care--painless, easy, usually insurance covered, cheap even if not) which may provide Hubby and family lots of good info for potential future treatment, especially if you have kids. Hopefully this is already in your kit-bag.

Dr. Eugene Kwon is a rare and marvelous guy. We need MORE MD's cut of his cloth. He's patient-outcome driven and very willing to break molds with intelligent risk taking FOR patients' interest (vs purely conforming to 'guidelines.'). He's at least a maverick, some MD's call him a renegade, tho thriving in the Mayo culture (anyway.) He's NOT an 'official' Oncologist. Yes, an MD (urologist) who's further driven his life work towards prostate cancer guys' success. He doesn't hesitate to "color outside the lines." We PCa guys who know him love him--period.

Congratulations and count your blessings!

[CJ4J in reply to BRCA2MX]

We are blessed by having this trial opportunity and getting these wonderful results. Hopefully they will learn more and be able to help more men with this treatment once it's approved.

Thank you for your words of wisdom. Genetic counseling is on our radar, we asked other Dr.s several times but were told it wasn't necessary yet. For our kids and grandchildren's sake he probably should get it done.

[marya21]

Congrats to you and hubby! Where was the trial please? We are in UK and there are several centres here participating in the Vision trial I think. Three or or four London hospitals to my knowledge.

[CJ4J in reply to marya21]

He is participating in the vision trial in Omaha NE, with Dr. Nordquist. The Mayo clinic vision trial was closed.

[marya21 in reply to CJ4J]

Thank you - I am hoping we can get on one of the trials in London

[CJ4J in reply to marya21]

I hope and pray he does as well!!

[Keepingdadgoing in reply to marya21]

My dad is due to start the UK trial on Wednesday. We were ready to travel to Germany but he got lucky with the randomisation in the Vision trial. I’ll do an update when I know more later this week. Good luck with your journey x

[CJ4J in reply to Keepingdadgoing]

Wonderful!! Hope all goes well!

[marya21 in reply to Keepingdadgoing]

That’s wonderful, good luck. Where in the UK please? x

[Keepingdadgoing in reply to marya21]

St Luke’s, Royal Surrey Guildford.

[BRCA2MX]

You're being a good Mom. Nothing is "necessary." Your call when, earlier=better is my read now that NCCN defines it as SOC for high grade/advanced PCa guys (your Hubby and me for example.) Managing this disease is all about patient initiative and personal advocacy. No silver platters in cancer treatment.

[j-o-h-n]

Which one is Dr. Kwon and which one is your Husband?

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/16/2019 11:05 PM DST

[CJ4J in reply to j-o-h-n]

The good looking guy with no hair is my husband 😁

[j-o-h-n in reply to CJ4J]

Sorry, I thought he was the other Kwon...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 05/17/2019 11:37 AM DST

[Hidden]

Believe in miracles .👏

[CJ4J in reply to Hidden]

That's what we are praying for and we know and have seen miracles happen🙌

[Hidden in reply to CJ4J]

Me too 🌚

[Mohopes]

I am so happy for you and your husband. Those are incredible results! My husband just received his first treatment with the combo of Lu-177 and AC-225 yesterday at the U of Heidelberg. They say he is an excellent candidate but, like you said, who knows why these things work for one person and not another. As preparation for treatment my husband took Xtandi in hope of increasing effectiveness. But the drug caused extreme edema in his legs and he had to stop it. The dr here said it didn’t matter because the evidence of Xtandi increasing effectiveness of the treatments is anecdotal only and to not put much importance on it. The dr thought my husband’s cancer expressed plenty of PSMA to attract the ligand. I hope that means he will be able to get as good of results as your husband.

[CJ4J in reply to Mohopes]

Beat wishes on your husbands treatment. Keep us posted on how he is doing. Sorry, the Xtandi didn't work out, but hopefully his results will be just as good and with no side effects. Prayers coming your way🙏

[MelaniePaul]

That's fantastic news. Brilliant. I can imagine how happy you must feel!

I think when we ask, "Why has this worked so well?" the asnwer is probably, "Because of everything you are doing." Having people pray for one, eating a good, clean and healthy diet, taking supplements, doing compelentary treatments, living a happy and fulfilled life... All those things and many more are important I think. It all coming together helps to get well and to stay well in many cases.

Long may it continue for you! Mel.

[CJ4J in reply to MelaniePaul]

Hi Mel, Thank you for you're sweet reply. It's nice to see you're still on here. I know this year has been difficult for you. Our time is in God's hand, and so we trust Him to lead us to the best way to keep quality of life until that time comes. So far so good. God's best to you!