Advanced Prostate Cancer
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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.

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I think you are making a good move. I would opt for Lu-177 before chemo, if in your shoes. I am studied on this---about 20 hours/not a lot--and have read some of the German papers--and one Doctor's Notes from Manhattan , who has been using Lu-177 for about 18-24 months---with stated success. Which means greater than 50% reduction in PSA--some very low.

Who are you using in Houston--I assume MD Anderson---can you give me a contact for my files?

Nalakrats

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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.

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Best best best wishes! Keep us all posted !

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

Leha

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

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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"

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

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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.

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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.

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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.

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Thank you I’ll keep you informed.

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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?

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Best Wishes for successful results.

Good luck and Good Health.

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

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

Thanks

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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.

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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!

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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

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

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