G9 since 2005, zero treatment until late 2017, now multiple Mets lymph and skeletal. Have fail Xtandi, Lupron, Taxotere. Now Indomethacin

[Sxrxrnr1]

Failed Xtandi monotherapy after successful 15 months, failed Taxotere, failed Lupron immediately, failed Cabazitaxal.

Asked MO to prescribe Indomethacin, Niclosamide, Avodart and 150 mg Casodex daily. Nothing else as alleged so called SOC was not working, what the hell. 2 MO’s said no chance of Casodex doing anything good.

However had been trying to get into a LU 177/Keytruda trial at UCSF for now 6 months but continually saw can kicked down the road for a couple of reasons not worthy of discussing now. Could not go Xofigo,,,only good for skeletal, plus disqualifies for LU xxx However UCSF now tells me that second taxane disqualifies anyhow. What’s a man to do!

PSA was at 400 at time of prescription. PSADT time of 5 weeks, extensive lymph and skeletal Mets.

The day I began the above medications PSA at 600. Was taking only one capsule of 3 drugs, but 3 of Indomethacin. No other medications except Xgeva injection and Have cut back Indomethacin to one daily because of observed skin bruising. Known side effect

2 weeks later after first takin this combination, first PSA test came back at 151. 2 weeks later, 2nd test was at 136. MO is stunned, I am mildly surprised.

Now before someone tells me that my most recent PSA at 136, I must multiply by 2 to get 272 roughly, because proscar and Avodart are notorious for disguising actual PSA reading by 50 percent,,,I do not believe this applies for cancer tumor portion of PSA reading verses that thrown of by healthy non cancerous prostate cells. Nonetheless, given my PSADT of 5 weeks, I should have been at PSA 800 at 2nd PSA test, instead I am at 136 Third test next week

Perhaps someone can enlighten me on this. My local MO has no knowledge on this. I will be going to PCRI in a couple of weeks and will see DR. Lam at Prostate Oncology while there,,also may see Dr. Turner. I will ask them about this question and the rest of this experimental phenomenon and what I am seeing.

I have attempted to obtain Niclosamide,,,another possible RESETTING drug. However difficult to do so

I began this journey pretty much on my own as SOC has failed Have been advised by 2 MO’s to forgo PROVENGE,,,and as noted above Xofigo is out for now Fully realized that Zytiga would likely fail as Xtandi already had. Am negative on AR-V7 testing.

Have had Foundation One and Guardant 360 tests to no enlightenment within my genes as to success with targeted therapies.

[cesces]

Please report back on Dr. Lam's assessment.

[Sxrxrnr1 in reply to cesces]

Saw Dr Lam this past Thursday. Asked his thoughts on Avodart effect on PSa reading. He said as I suspected and TA emphasized.

Proscar nor Avodart have any effect on cancer tumor generated portion of Psa reading,,,only effect on PSa generated from normal non-cancerous healthy prostate cells. These drugs can cut in half the PSa reading from these cells.

Therefore my experience with Casodex in reducing my PSa from 600 to 151 within 2 weeks of commencing its usage and having failed Lupron, Taxane chemo, and Xtandi appears legitimate.

A second PSa 2 weeks later was at 136. If had not been on Casodex, given my PSADT of about 5 weeks, extrapolating PSA would have been about 1,000,,,this is quite encouraging.

However because of side effect fatigue of Casodex, I then cut back from 150 mg daily to standard 50 mg dose. 2 weeks later, PSa had climbed to just over 200,,,,still monotherapy,,,perhaps if remained 150 mg dosage this would not have occurred.

I have now obtained a prescription for Darolutimide which I will soon be using. Am somewhat concerned as noted earlier, I have failed Xtandi,,,and have no idea yet if Indomethacin experiment is performing its purported ‘reset’ business.

I will post progress later in a new thread on my experience with Darolutimide.

Just returned from PCRI. Darolutamide is being provided at no charge for a 2 month trial period for those who qualify.

[cesces]

Have you considered Germany for Lu,177?

[Sxrxrnr1 in reply to cesces]

Yes I have. Expense, very remote treatment/follow up location, with very sketchy documented successes and times to recurrence for those men having had initial good to excellent responses are foreboding obstacles. No information on any benefit to overall survival extension are claimed or documented, progression free survival claims not withstanding.

[Tall_Allen]

No, you wouldn't multiply your PSA.

[Sxrxrnr1 in reply to Tall_Allen]

Does your response suggest that my drop in psa from approximately 800 to 136 after about 4 or 5 weeks of usage of indomethacin, Casodex, and Avodart, I can take to the bank. All of this after previous failures of Xtandi, Taxotere, cabazitaxal, and Lupron?

For how long this may continue I have no idea.

My primary goals in doing this experiment are,,,to reduce rapid rise of Psadt from about 5 weeks with hope of drop in PSa,,,so far achieved.

Secondary goal is that reset of resistance to 2nd generational AR inhibitors would permit Darolutamide to have a chance of response. I have followed this drug for several years now,,,particularly when experiencing side effects of Xtandi and also its limited resistance to becoming resistance.

However am aware that Darolutamide currently approved for non metastatic PCa only. Will hopefully be able to cross that bridge when I come to it,,,compassionate use, or right to use governmental regulation.

Much to discuss with Prostate Oncology when meeting next week prior to PCRI conference. As of now they have not been informed of what I am currently doing,,,,hopefully will not be given the boot. Lol

[Tall_Allen in reply to Sxrxrnr1]

I didn't mean to suggest that. You had raised the question about cutting the PSA in half in newly diagnosed, biopsy-naive patients taking Avodart, and I was just agreeing with you that that doesn't apply to you. Also, PSA may become a less useful biomarker as PC evolves into types that do not put out as much PSA. You have to look at a broader picture including other biomarkers and scans.

[Sxrxrnr1 in reply to Tall_Allen]

Thank you, having read Richard Ablin’s insightful book a couple of years ago, I 100 percent agree your assessment of sketchy value of PSA tracking value for advanced PCa.

amazon.com/Great-Prostate-H...

Was seeking information on any peer reviewed evidence of possible myth suggesting that Avodart/Proscar PSA readings when on these drugs must be multiplied by 2.

I have never understood this phenomenon, but often heard or read that this is gospel. Even from those I highly respect in other regards,,,including treating physicians.

Do you know of any peer reviewed studies to confirm our agreement on this topic, I guess is my question.

As so far I have seen a very unbelievable remarkable result in PSa response regardless of indicated proven resistance to Taxanes, Lupron and Xtandi, from my experiment,,,albeit as you suggest, no scans to confirm yet,,,which will be initiated soon.

Will this last long,,,I am hopeful but not optimistic. Still hope to make it long enough to find my way into a LU xxx or Darolutamide trial for metastatic PCa.

Doing nothing until then was not an option,,,which I was basically being told to do,,,as no reasonable SOC alternatives were being offered by Physicians.

[Tall_Allen in reply to Sxrxrnr1]

There is no peer-reviewed publication because it is not an issue for men with your diagnosis. It is only done, as I said, for men who are being newly diagnosed to determine whether they are at risk for having prostate cancer.

[kainasar]

These are second opinion programs at 2 PC hosp. Also, clinical trials at both.

mskcc.org/experience/become... dana-farber.org/appointment...

[tango65]

Regular niclosamide does not work because is poorly absorbed by the gut. If you want to use the modify niclosamide (good absorption) you need to apply to the clinical trials at UC Davis,

clinicaltrials.gov/ct2/resu...

[Sxrxrnr1 in reply to tango65]

Applied was rejected some 6 months ago, reason not given. Suggestion was that I had refused treatment for some 13 years after initial diagnosis. May not comply well with trial compliance.

[tango65 in reply to Sxrxrnr1]

Clinical trials are always difficult. Perhaps, you could explore Lu 177 PSMA treatment in Australia or South Africa and see if it is affordable. I went to Munich for Lu 177 PSMA in 2016. The treatment was effective for the lymph node metastases I had.

Best of luck

[ronnie1943 in reply to tango65]

Hi tango65... My husband Sam just went through updating bone scan ct scan blood work. Drove from Philadelphia to Gettysburg to get the Pet/ct for the PSMA. scan.. My husband Sam, qualified but was denied for the Lu-177. ... We were so disappointed. Sam is still in the trial, but will be put on Xtandi instead of the Lu177 radioactive infusions. The MO is saying Xtandi is somewhat of a trial. I guess, my question is have they changed Xtandi, is it different from years ago. My husband was on it way back and it didn't work for him??

Sincere Best wishes for continued good health.

Lynn Pa.

[tango65 in reply to ronnie1943]

Xtandi has not been changed. If he failed Xtandi before the chances are that it will not work again. Sometimes chemo between Xtandi treatments or abiraterone treatments could resensitize the cancer to Xtandi.

If he does not respond to Xtandi you could explore the clinical trials with modified niclosamide which could resensitize the cancer to Xtandi or Abiraterone:

clinicaltrials.gov/ct2/resu...

Best of luck on this journey

TG

[ronnie1943 in reply to tango65]

Thank you for your reply.. We will see Sam's oncologist this Thursday at Jefferson here in philly. Still having a hard time excepting the fact that we were denied the Lu-177... Wish we could start all over..

Thanks again and sincere best wishes for you too!! Lynn

[Sxrxrnr1 in reply to ronnie1943]

Were you offered any information as why rejected for Lu 177 trial?

UCSF and Stanford both have not exactly rejected, just either do not respond to my queries or continue to just kick the can down the road,,,keeping me hanging on.

Have others experienced this behavior?

[ronnie1943]

Hi Sxrxxr1.... My husband was to be in the "Vision" Lu-177 trial. First he had to update his bone scan, ct scan, and blood work, all had to be with in twenty days of the Pet/ct scan. He had all that done at Jeffetson hospital in Philadelphia. Had scan for PSMA in Gettysburg. My husband qualified, but the trial is randomized and 66% of men are denied. Sam, my husband was one out of every two that was denied. Sam is still in the trial but, will be put on Xtandi.. I guess to see who last longer the men on the Lu 177 or the ones on Xtandi..

We are so disappointed...

[Sxrxrnr1 in reply to ronnie1943]

I posted this further up this thread to Ceces. Posting again down here for you to read if you missed it.

Saw Dr Lam this past Thursday. Asked his thoughts on Avodart effect on PSa reading. He said as I suspected and TA emphasized.

Proscar nor Avodart have any effect on cancer tumor generated portion of Psa reading,,,only effect on PSa generated from normal non-cancerous healthy prostate cells. These drugs can cut in half the PSa reading from these cells.

Therefore my experience with Casodex in reducing my PSa from 600 to 151 within 2 weeks of commencing its usage and having failed Lupron, Taxane chemo, and Xtandi appears legitimate.

A second PSa 2 weeks later was at 136. If had not been on Casodex, given my PSADT of about 5 weeks, extrapolating PSA would have been about 1,000,,,this is quite encouraging.

However because of side effect fatigue of Casodex, I then cut back from 150 mg daily to standard 50 mg dose. 2 weeks later, PSa had climbed to just over 200,,,,still monotherapy,,,perhaps if remained 150 mg dosage this would not have occurred.

I have now obtained a prescription for Darolutimide which I will soon be using. Am somewhat concerned as noted earlier, I have failed Xtandi,,,and have no idea yet if Indomethacin experiment is performing its purported ‘reset’ business.

I will post progress later in a new thread on my experience with Darolutimide.

Just returned from PCRI. Darolutamide is being provided at no charge for a 2 month trial period.