Vision trial completion: In a few hours... - Advanced Prostate...

Advanced Prostate Cancer

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Vision trial completion

JimBarringer profile image
28 Replies

In a few hours, I will have my 6th and final infusion of lu-177 in the vision trial. It has worked for me (PSA was 375 at start, today it is 2.67). What I haven’t been able to find out is how long to expect these results to hold off the beast. Any thoughts would be greatly appreciated.

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JimBarringer profile image
JimBarringer
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28 Replies
Magnus1964 profile image
Magnus1964

Everyone responds differently to treatments so there is no way to know. Take care of yourself with diet, exercise and keep up your vitamin D3 level.

Good luck, my prayers are with you.

JimBarringer profile image
JimBarringer in reply to Magnus1964

Thank yiu

Tall_Allen profile image
Tall_Allen

Let us know.

tallguy2 profile image
tallguy2

Please keep us posted. Thanks for being part of an important research effort.

JimBarringer profile image
JimBarringer in reply to tallguy2

I will, thanks

GP24 profile image
GP24

In this study they report: "Considering ≥50% of decline as a response, median OS was 21.0±5.8 (95%CI, 9.5-32.4) months for responders...."

ncbi.nlm.nih.gov/pubmed/316...

Longterm101 profile image
Longterm101

How r the side effects? Any bone pain? Praying for u

Claud68 profile image
Claud68

6 months after the third Lu177 treatment, my husband's PSA was 0.34. It dropped slowly, month after month, faster the first weeks after the third shot, and the PSA seems now, seven months later, stabilised between 0.34 and 0 37.

My husband had no ADT, only RP in November 30 2018, and biochemical recurrence right after the RP with a fast rising PSA. Four weeks later: 2.16, six weeks later : 2.55 and finally 4.40 before the first Lu177 about three months after the RP.

He had 6 mets on lymphnods. And in several weeks in April he'll have a Ga68 psma petscan to see the results. He was Gleason 9, stage IV and had 11.80 PSA before the RP with seminal vesicles invasion, but no bone mets.

paige20180 profile image
paige20180 in reply to Claud68

So happy to hear❤️

Patrick-Turner profile image
Patrick-Turner

Hi Jim

I had 4 shots Lu177 with Xtandi added right after No 3 shot and Psa went from 25 in Nov 2018 to 0.32 in Nov 2019. PsMa scans in August 2019 showed huge reduction of soft tissue and bone mets.

But 3 weeks ago Psa was 1.3, and CT scans showed 2 active bone mets only so I may need more Lu177, maybe with small % of Ac225, after another PsMa scan.

But if there's no PsMa expression and low SUV for Ga68, then its time to get tumor sample DNA analysed for what may work.

The mean time for end of initial Lu177 benefit maximum is about 14 months, and that's exactly what I have had if I count the time it took to give the therapy, to when Psa began to rise again after a nadir.

I'd failed with Docetaxel before Lu177, so not much chance any other chemo will work.

I see oncologist in 3 weeks to see what is next step. But my Pca is under control, and I feel very well at 72yo and have been cycling 200km+ per week now for awhile, at good speed, and no Pca symptoms, just lingering side effects of chemo and continued effects of long term ADT since Dx in 2009 with Gleason 9, inoperable, despite low Psa of 6 at that time.

I'm in Canberra in Australia and I bought the Lu177 from Theranostics Australia in Sydney.

Take care, and the fight is not over until it is over.

Patrick Turner.

mklc profile image
mklc in reply to Patrick-Turner

Such happy result. Well done and good long health to you.

captain2020 profile image
captain2020 in reply to Patrick-Turner

Did I misunderstand. You "bought" the Lu-177 and had someone inject it. Please clarify. Thanks!

JimBarringer profile image
JimBarringer in reply to captain2020

Cap, I was in the Vision Trial at OHSU in Portland, OR. You May have meant to direct this to Patrick Turner.

Patrick-Turner profile image
Patrick-Turner in reply to captain2020

Yes, I bought it in Australia where I live. Its not available for sale on its own though, and I needed my oncologist to refer me to doctors at Theranostics Australia who will decide if a man will get a benefit after seeing PsMa scans, then arrange to have the man come to a private hospital ( not a Govt funded hospital ) and doctors supervise the infusions, and my costs were about usd $25,000 for 4 infusions. There was no Medicare rebate, and I don't have medical insurance, so its straight out of my savings. Its buying it, and not free like it is at a trial.

There was a trial here for Lu177 or Cabazitaxel but there was a wait to get into it, and men got randomly assigned to one or the other, and I knew I might get assigned to Cabazitaxel , and I didn't want that because Docetaxel had failed badly, so a trial was useless, and to be sure of getting Lu177 when I needed, ie, within a month of referral, I bought it from TA.

I have know ppl to just spend a million to beat their cancer with care that is not available in the public hospital system, and its all totally free, so my dual knee operations and radiation and so much else did not cost 1 cent. The public hospitals are good though, they do 80% of medical fixes and our PBS scheme makes my Xtandi cost only $6.30 a month.

If I was in USA, getting cancer treatment would be far more expensive.

Patrick Turner.

Poppi07 profile image
Poppi07 in reply to Patrick-Turner

Hi Patrick-Turner

We are cairns nth qld. My dad has a similar presentation to yours. Seems like he may also be failing docetaxel. Gleason 10 with bone Mets. I’ve always wanted to keep this option up our sleeve if needed. My understanding is that it’s $10,000 a pop if not on a trial? Which hospital/ centre did you go through? So glad it’s had a positive response for you!

Patrick-Turner profile image
Patrick-Turner in reply to Poppi07

Hi Poppi, Yes, Lu177 is about aud $9,600 for each infusion, and probably 4 will be needed about 8 weeks apart. Other expenses will be for 3 x PsMa scans at aud $700 each, plus initial talk to doctor at Theranostics Australia and using Skype for $500. Then you'll have to travel to Brisbane 4 times to get the treatments, but you are free to contact Theranostics Australia to find out if they have a clinic in Brisbane. I live in Canberra and got my Lu177 at Waratah Private hospital in Hurstville in Sydney.

Your dad needs to be referred to TA by your local oncologist, and you must have PsMa scan before talking to TA docs and within 1 month of referral you dad may begin Lu177 infusions. Your dad's Psa is also considered, if its very high there may be less benefit to be gained. He can be having ADT now and maybe have Xtandi added which is supposed to make Lu177 more effective.

People in regional areas of Australia have much more difficulty seeking the best oncologists and then paying the expenses of travel to at private hospitals a long way away from home. I had to travel 4 times to Sydney, but its only 300km, so I went by train and my fare was subsidised by Govt. I stayed 2 nights at my sister's apartment so the travel costs were negligible. There is no medicare refund for the Lu177 or PsMa scans.

Some men get very good response to Lu177, at least 70% get Psa reduction of 50%, and I had Psa move from 25 when I began Lu177 to 0.32 at 1 year later, and I had countless soft tissue and bone mets. Psa is no <2, but rising, but last CT scans I had showed only 2 active bone mets, and I may need more Lu177, or some other thing, and docs will decide soon when enough is known.

Patrick Turner.

Poppi07 profile image
Poppi07 in reply to Patrick-Turner

thanks Patrick. Please keep us updated with your progress. All the best

paige20180 profile image
paige20180

Thankful you are doing so well. Great work taking care of you. What you have done is not easy. Acknowledging you and sending healing thoughts.

blueCello profile image
blueCello

Congratulations, Jim! sounds like Lutetium was a good experience and quite successful. Stay health.

immunity1 profile image
immunity1

Jim: My 2017 experience with 4 doses of Lu177 was as follows. My PSA decreased after the first treatment from 1.3ng/ml (prior to treatment) gradually to <0.1ng/ml after treatment 4. Subsequently, PSA increased from 3 months following termination of treatment 4. All lesions (6 soft tissue lesions in prostate bed area) which were PSMA avid had shrunk in size after treatment 4 and continued to over a number of months, such by 1/9/19, only 1 of the pre-treatment lesions was detectable by PET PSMA/FDG. However, other mets had appeared by then (mid 2019). Hopefully it will prove useful to you too. Cheers, Rob.

JimBarringer profile image
JimBarringer in reply to immunity1

Thanks Rob, I really appreciate hearing your results. Thank you very much.

Jim

Claud68 profile image
Claud68 in reply to immunity1

Congratulation for the successful treatment results! What will you do now to kill the new mets ?

immunity1 profile image
immunity1 in reply to Claud68

On chemo now. After that who knows, depends on genetics, imaging, and quality of life. All is well.

Claud68 profile image
Claud68 in reply to immunity1

Hope you are well and it will be successful!

JimBarringer profile image
JimBarringer

Thank you

AlanLawrenson profile image
AlanLawrenson

My brother had 4 cycles of Lu177 in Sydney Australia. Excellent initial response, but about 6 months or so after last injection, he started to get pelvic bed pain, but his PSA remained around 1. He went on 6 week holiday to the States and Canada, taking curcumin mixture that lowered pain. On his return, his PSA shot up to 105, doubled again in 14 days. His two PSMA PET scans showed minimal Ca metastasis which the MO and TA Australia suggested was probably due to widespread micro-metastasis (too small to be detected on PSMA PET scan).

Sadly in a month he became too ill to handle Docetaxel and died 15 weeks after his PSA of 105 was detected. (In my view, if he had started Docetaxel, etc., immediately the pain emerged, it is likely that he would still be alive today - he and I took our eye of the ball, which you cannot do for a moment with this terrible disease).

As I understand it from my brother at the time, TA have seen, quite a few men see a rapid rise in their disease about 6 months or so after a 4th injection. They determined he was not suited to a 5th cycle.

I have researched this subject reasonably thoroughly. The results are variable as with other treatments. It appears each subsequent injection works for a shorter period. It also seems that the the J617 peptide may not be optimal. The J591 peptide (Telix Pharma) appears to offer more than double the time to disease progression according to a recent trial.

Then there are the combined therapies. The LUPin trial in Australia is about to begin combining Lu177 with Veyonda which is a new Australian drug that is about to enter a Phase 2 trial (DAART 2) after a successful DAART1 trial.

Finally, I think that Lu177 (and similar isotopes) are again a tool that will buy the patient time until a more substantive therapy emerges. I have been bold (or silly) enough to outline 25 future developments that might fill this space, in my recent book.

Fairwind profile image
Fairwind

I too have finished the Vision Trial with 6 infusions spaced 6 weeks apart. At the start, my PSA was 2400 and at the end, 135. It has since climbed back to 685 in just 2 months.. LU-177 is a powerful Beta particle emitter so it comes with some radiation caused side-effects..I was hoping for a longer remission after the treatments stopped but maybe not.....I may try R-123 as a last ditch treatment, I was about to start it before I got into the Vision trial..I'll be 78 this June if the Covid don't get me first ! I have no pain and am still able to function fairly normally..

JimBarringer profile image
JimBarringer in reply to Fairwind

I’m sorry to hear about it creeping back up so quickly. I think I’m about two months out from last infusion now and PSA is still down. Haven’t really experienced side effects other than fatigue from Zytiga. How did the 177 do with your bone Mets? Stay away from that Covid stuff. I wish you well.

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