Trying LU-177

Hello all just giving an update and will take any advise. Have been on Xtandi for 90 days PSA is climbing about 10 points per month, back up to 59. Zytega didn’t work and don’t really want to do Chemo at this time. Going to Houston end of May to get started on the LU-177. Hoping insurance will pay something but know it may not. Would love to hear from anyone on how their experience with this treatment has been and what I can expect.

[Hidden]

We are going to Excel Diagnostics they are still in phase 2 of the clinical trial. Looks like phase 3 will start sometime mid June with a lot more requirements to get in. Their number is 713-781-6200 extension 3203.

[dadeb in reply to Hidden]

Best best best wishes! Keep us all posted !

[Leha in reply to Hidden]

Phase 3 will start at Mid June with NO cost. Randomsize 2:1 at Excel Dignostics.

Leha

[Hidden in reply to Leha]

We were told one of the requirements may be already tried chemo. We are trying to avoid chemo at this time.

[gusgold]

I can't get Humana to approve payments for approved drugs let alone clinical trials...did Excel give you an idea of the cost...I thought most clinical trials were "no cost"

[Hidden in reply to gusgold]

With the Gallium scan and LU 177 it’s about 15,000. Hoping our insurance will reimburse for some of it.

[Tall_Allen]

There will be a new trial starting in the US that will be free, but randomized. When I talked to the folks in Houston, they estimated the cost at around $9000 - not covered by insurance. If you have multiple mets, I think you should consider docetaxel first. I think Lu-177-PSMA is better at cleaning up the residual that the docetaxel didn't destroy. In the studies on it I've seen so far, patients were either pre-treated or currently treated with docetaxel. Since it costs so much, I think you should give it the best chance of giving you a benefit.

[Hidden in reply to Tall_Allen]

We are hoping to avoid chemo for personal reasons and it looks like the Phase 3 will require having had chemo so that’s our reason we are going into the phase 2.

[paulofaus]

Hi Tbrum, I'm hoping to get Lu177 privately here in Australia soon. I was deemed ineligible for the current clinical trial due to low PSA, under 20. I'll be keen to hear how you get on. Cheers Paul.

[Hidden in reply to paulofaus]

Thank you I’ll keep you informed.

[ARIES29 in reply to paulofaus]

Hi paulofaus,we are in the same boat & in same country,psa under 20 & watching along with my bank balance. It is not cheap but what price life?

[j-o-h-n]

Best Wishes for successful results.

Good luck and Good Health.

j-o-h-n Wednesday 05/16/2018 2:28 PM EDT

[TenscTexan]

I was wondering if you had any success getting in the Excel Clinical Trial?

Thanks

[Hidden in reply to TenscTexan]

Sorry it’s taken so long to reply. I did join the Phase II trial. My PSA in May reached 79 after the first treatment it dropped to 28.7. I have just now returned from my second treatment in Houston. In the phase II trial we pay for everything. They found lesions I didn’t even know I had and the ones we knew of were much more advanced than thought. Some of the lesions have shrunk in size after the first treatment. My only problems have been nausea and fatigue. We are having to watch my white blood count as it is borderline so low I won’t be able to do a third treatment. My oncologist was not in agreement with me doing this treatment, but after seeing the results from the first treatment he is on board. Good luck to all in this fight for more time.

[nobaday in reply to Hidden]

What is your latest on Lu177.

Thanks!

[TenscTexan]

Thanks for the reply, I’m glad to hear the treatment is working. My trial doctor has already called me out on the WBC.... but, mine is the opposite, too high?

My PSA has been rising, but I’m still under ten. I’ve had one treatment, the next will be August 28th. Fatigue is killing me, no energy what so ever and I get winded going to the car. I’m having to take Zytiga along with the trial and honestly, I think that is the real poison, it takes a little bit every day, I have gotten progressively weaker and lost a lot of muscle mass since I’ve been on that drug since February and it only worked for 3 months.

Let me know how it goes, glad to hear yours is working, I can only hope the dose I am recieving is strong enough to get good results. I am in phase I, group one, the safety dose to make sure it doesn’t kill you. There have only been 3 patients so far in my trial and we got a half dose of Lu177, but they don’t know for sure that it won’t work just as well since they the don’t have much history of this drug at lower doses. I hope so.

Good Luck!

[Daddysdaughter in reply to TenscTexan]

I am so sad to hear the angels have taken you. Rest In Peace, so sorry to the family for Steve’s loss.

[Grumpyswife]

Thank you both for sharing this with us as so many will benefit from your experiences.

So are both Phase 1 and 2 self pay? Chemo not required for either phase?

I am devouring all of this as I am sure my husband will be running low on options soon.

Mary

[Hidden in reply to Grumpyswife]

Chemo not required for phase 2 yes it’s self pay. Happy to answer any questions.

[Lowbedontime]

Hello all. I started prostate cancer treatment Dec 2017 with a PSA of 208 with Bone Mets, soft tissue Mets. After radiation then doxctalel and on to lupron and abiraterone. PSA went down to almost unmeasurable. PSA began to rise again. May of 2019 Began 6 rounds Lu177 and Xtandi on March 17 2020 PSA was .003. Twelve weeks late PSA began to grow.

Today i am still on xdandi, bone scans and CT scans show no new growth but PSA is steadily rinsing now up to 2. My wife Maureen is my rock, and god knows I need her and appreciate every thing she does for me. She would bring crushed Ice to the LU 177 infusions and pack my neck. I never had any issues with my salvatory glands. She also did the same for my feet and hand during chemo. She also is there every day through good and bad. No side effects in that area from chemo also. Let me end on a positive not LU 177 gave me great hope and a wonderful extension of life maybe it added a year to my future. I have been

lucky I still have worked ( i move const equip and enjoyed my hobby as a amateur race car driver) through out this experience. I still have moments when tears come rolling down my cheeks and sadness overcomes me. This has been harder emotionally then physically. I am beginning to slow down and my memory has taken a hit. I want to say “ thanks Jim from Cambridge Ma. you have been a great mentor and friend helping me understand my cancer”.

If ever I can share my experience and you don’t want to do it here, also i have trouble navigating the internet sometimes you can email me at [e-mail]. Regards to all this is not easy. Thanks to all, that have helped me at Weill Cornell Medical Center New York. You have extended my life. David Lowbed Johnson